Samuel's Updates

6/2/06

There are just some days where I don't know why I even bother to try to do anything around this house. Today is one of them. I have spent the last several days playing phone tag with people and my frustration limit is at the breaking point. I spoke with the NP on call and got confirmation about Samuel getting in with the surgeon on Tuesday. No date or call Wed. I call them and the scheduler is out. Thursday, no call. I call them again and she is still out. I get a call from her today, or rather a voicemail which sounds rude and like she doesn't know why I would be calling her. I couldn't take this call at the time because I was on the phone with the bank trying to determine if our equity loan will ever be done. Thankfully, we may be signing docs next week on that. No call from Cincinnati since I sent them all their requests but this is a short week and I wasn't really expecting anything from them yet, even though they assured me they would be calling. Meanwhile, our former Onc who has never gotten back to me must have had his ears burning because not five minutes after I told Mark was still haven't heard anything from him either, I get this e-mail.

I have not forgotten about you. I am making some phone calls to see if a general pediatrician based at CHRMC can follow you. It is a little challenging to find someone who can meet your needs. I will get back to you when I find someone.

Well, maybe something got lost in the translation here but I was livid. My last e-mail to him was Monday night stating that Samuel needed someone now and was urgently needing care. He of all people should know that when Samuel needs urgent care, he NEEDS it now. Now some four days later I get this response. IT IS A LITTLE CHALLENGING TO MEET MY NEEDS???? He can be really glad he did not say that to my face. All I have asked for is a referral to someone within that hospital competent enough to get us the care we need when we need it. That means being able to be seen within a day or two of calling with an urgent medical need. That means having someone who can pester the surgeons to get us taken care of the way HE used to. By the way, might I mention that WE would not be so needy if not for the devastating effects of "their medicine." It enrages me to no end that they could give my child "poison" in the name of cure, and then when the damage and problems exceed the normal, we could just be TOO CHALLENGING!!!!!!!!!!! Yes, challenging because I expect them to do right by him. Challenging because I don't take no for an answer. Here I tell this person who states he actually cares about Samuel that we are not getting the care we need and are desperate and I get THIS back four days later. I cannot even tell you how pissed I was and still am. He CHOSE Oncology as a profession. He CHOSE to knowingly poison kids. He KNEW the devastation this poison can cause. And he has no problem dispensing it, but then cannot help pick up the pieces when it all goes wrong. Samuel is not in the condition he is today because of something WE did. Not because of some tragic accident or abuse or neglect. He is the way he is today because of them and their "medicine." Medicine they give fully knowing that any one does could be lethal. And now I am being told that there is no one up in Seattle who can meet our needs....Needs that were caused by them? I keep thinking I have never been madder and then something else happens.

Just in case I was misreading this, I read it to Mark and his response was "Wow, he has never sent anything that rude. Maybe he was having a bad day and thought of you."

I called Mary to get her opinion and opinion on what I can do at this point because that was BS. Her impression reading between the lines is that he thinks we have unrealistic expectations. She doesn't think that we have unrealistic expectations but at that same time can put herself in our place. Our former Onc has obviously never tried to put himself in OUR place OR Samuel's. As Mark said, he is too busy poisoning someone else's kid. Being constantly told to wait, or being put off is one thing if you are an adult who can speak for yourself, but being a child, being Samuel. Who is going to speak for him if we do not? Who is going to put themselves in his place if we do not? Well obviously not our former Onc. Any respect I had for him is now gone. Mary told me who I could take this to at her hospital and basically what I wanted to do was find someone who might listen and care and help.

I really wanted to send him a response to his note, but pretty much everyone in unanimous on there being no point. He would not get it, or care at this point. So I am just putting it here in the journal so if feels like I have told someone, or lots of someone's who will share in my anger at this moment. Is it unreasonable to just want my kid to be able to POOP LIKE EVERYONE ELSE???? To be able to EAT LIKE EVERYONE ELSE? To not want him to live in torment for MONTHS while people stand by and put us off. I am so ready to leave this state. I would really like to just go on with my life, not live in the same day over and over. I am sure Samuel would like to be able to enjoy his life someday too.

So I called Children's and had them get me to the appropriate area and you won't even believe what I found out. First, they do not have any primary care or general pediatricians on staff at that hospital. None. Now, how hard would it be for our former Onc to just say that? I was under the impression that there were some there. But apparently not. It took me less than five minutes to figure that out speaking to someone there. It would take him even less. After going over all the issues we have had of late, this person asked me about the General Surgery NP's. His impression was that they should be our link to the surgeons because at the moment, we have no other medical specialty needs. So I gave him an earful on them and how unhelpful they have been as of late. Between the never returning calls, the 20 questions and what seems like now, them trying to be doctors when they are not, they are worthless. ON top of that, the lack of follow up, the rude returned calls by the scheduler, etc, etc. they have failed us countless times. And the two who know us best are the ones who have been the worst. It is just unacceptable. On top of that, I explained to him that one of their former surgeons told me that we needed someone outside Surgery to pester them and if THAT did not show the problems and communication breakdown within this department, I don't know what else does. It is not as if I haven't complained directly to this department already. So he got off the phone and was going to have a chat with them to find out how to help us more.

So while I was on the phone with him, someone from Seattle GI calls. GI. We don't have GI there. Apparently our Surgeon called one in for the EUA on next Wednesday. She was calling with the eating instructions for gut clean out prior. Well, this was the first I had heard of that so I called her back and told her I had no idea what she was talking about so she better start from the beginning. She explained to me that our Surgeon had called their attending to come in on the OP proceedure this coming Wednesday because our barium enema study showed inflamed tissue. So they are just NOW addressing that!!!!!!!!!!!! Now almost a month later? Don't you think they might have wanted to look at it a few weeks ago? So his dilation will include an ileoscopy to get a good look at the tissue and what may or may not be wrong with it and perhaps a biopsy. This is all so frustrating. I guess the surgery scheduler finally got wind of why she was calling me so she left yet another message including the time for next Wednesday's fun while I was talking with the GI person.

Oh, and then the person I complained to called me back to say that the appts were made and did I feel better now? Huh??????????? Oh sure, I feel great. Greatly pissed. It is just all a little to late. Too much has been said and not done. Too many disappointments. I told him that sure, this was nice, but we still have to wait another five days for something that should have been done this week, if not last. And then, what about next time. That stopped him....next time? Yes, you know the next issue we have that no one wants to bother with. He said to call him. Well, you can be sure this entire department HATES to hear Samuel's name right about now. Probably equally as much as I hate to hear theirs right now.

As I told Mary, I don't want to be a part of this system, but unfortunately we are until we find SOMEONE who can put Samuel back together the RIGHT way. And after that, I will not step foot into a hospital for as long as I can get away. If we never went back it would be too soon. But unfortunately no one to date has been able to fix him so we go back, we persist and we EXPECT them to right this. And if that is unrealistic in our expectations, then they should not be a hospital and none of those doctors should be able to "practice." I just really need a break from all of this!!! And there never seems to be one.

So, aside from all this awfulness....

Samuel is potty trained! Other than if his poop is uncontrollable due to circumstances as they are now, he is going to the pot on his own. I don't ask him anymore, he just goes. The light finally went on and he figured it out. So in spite of his gut being erratic, he is not making things worse for himself by pooping and peeing all over himself. And my mom thought since he seems to be going more, he will be dilating his anus from the inside out. Between pushing and gravity, he might be able to open his anus up a lot without exterior help. Things seem better today after a few days of lots of pooping, but thankfully mostly all in the toilet. So, I am really happy about that part in all this and proud of him. It helped a lot that I cleared our everything workwise so I could totally concentrate on him. He had a few accidents this week, but it was obvious by consistency that it could not be helped. He was playing outside and fell down, hurt his leg and crapped his pants. That was pretty dramatic! Sad. And if he gets in trouble and sent to his room, he will go in his pants. Once I figured that out, instead of sending him to his room, I sent him to the pot when he was in trouble Yesterday was the first day he started going in there by himself. Wonderful! I have so much to do right now that I forget to remind him to go anyway. We are still going to have nighttime issues, naptime issues, etc. And I don't trust him enough when we go places obviously. Not that I think he will do it intentionally, but more that I think he won't be able to control liquid passing through quickly and it will be very traumatic to him to have an accident while we are out and not easily able to "fix" him. We have had great success with the addition of excess salt to his diet

and getting poop to make it through. The back up and old stuff is gone and while what we do see is not normal or ideal, it is better than old acidy rotten poo.

So going on my theory that if I can potty train Samuel I can potty train anyone, Anna is now regularly sitting on the pot. She still has a ways to go, but she is pretty smart and I think she will do fine. She is at least interested and wants to keep up with Samuel so she poops and pees on the pot without protest.

My attitude, energy level and livelihood are all connected to Samuel's well being so for the sake of us both, I hope things start improving here with getting him the help he needs. The answer about where we need to live, get medical care, etc is loud and clear, NOT HERE. I just feel restless tonight because other than the small amount of complaining I did on the phone, there is nothing "I" can do to change this system. We cannot be the only ones getting unacceptable treatment simply because we don't fit into the norm. And that very fact is really eating me up tonight as well. We don't fit in anywhere except the abnormal. And there are no real support groups for that. There are no support groups for kids who have left a chemo protocol because of the damage it did, well other than the ones who have been sent home to die. I brought my kid home to LIVE. But how can one live when you cannot do some of the most taken for granted things in the world, eat and poop. It doesn't help that I don't want to be a part of the "system" either. My MW was here the other day and was floored that we would move away for medical care. "Aren't you done with all that?" I guess since we stopped chemo, all this other junk just fixed itself overnight and we lived happily ever after. You would be amazed to know how many people actually think that. How I wish that were true. You have no idea how I wish we were done with all that. No idea how I wish we could just move away and forget it ever happened. No idea how much I would like to move to BFE until my sould has healed from the devastationI have had to witness. You just have no idea how all these days take their toll on us all.

5/30/06

Finally! We might be getting somewhere.

Our former Onc did send me a note requesting more info last night. Basically wanting to know where and what kind of doctor we wanted. Hi, someone THERE, right in the middle of Children's who knows the system and can get people to us asap. I thought that was self explanatory but I guess not. Haven't heard back. Note he did not offer his help. As Mark says, he was probably glad to be rid of us and Samuel is just too involved for most doctors. He won the lottery the day we walked in the door, that was for sure. Most doctors don't want a case like ours, too much history and too many possible complications. Their loss!

I did find out that the doc in Cincinnati was gone all last week and ended up resending the info I sent last week. Apparently our paperwork fell through the cracks there which is why I have not heard a word. Is it just me or does that not bode well. So, I got a call right away from someone at their office and an e-mail with some things to fill out and a list of things they need to get going. Supposedly we should have a date this week so we can start making plans on getting there.

Meanwhile, I called Children's here and was transferred to a new NP whom I have never met. Not happy at all about that! At first I just hung up when I got the voicemail. But later after realizing that things here are growing steadily worse fast, I called back and left a message. Pretty much told her I wasn't playing 20 questions, or phone tag since I had called last week and no one bothered to make the effort to make contact. We have a serious problem, we need it fixed now and if there was any question about whether or not I know what I am talking about, she needed to talk to the surgeon BEFORE calling me. Well, she called me first and we chatted a little but after that she DID call the surgeon who said we can just come in for a sedation slot for another EUA and dilation. Of course, no one has called me to set that up so tomorrow I will probably have to call again. We are pretty sure that this is the first our surgeon here has even heard of our latest issues and I am so glad he at least had sense enough to get us in immediately. How immediately remains to be seen. I really hope to get a call for a slot Thursday because things today have been rotten. Every second we have to wait means more pain, hunger, grief and suffering for Samuel. I am so thankful that this NP did not drop the ball. They just need to put a standing order in our file that if we call about this problem, we get in asap, no hassle, no BS until we can have this surgically fixed. Well we hope that surgery can fix it anyway.

The new pic above was taken yesterday when things were so so. Look into those eyes! Despite what is going on down below, he is still glowing. I just looked back at the pics from 2004 when he was not able to speak or move and his eyes are just listless. Today we are not getting many smiles. Samuel has been in the tub six times starting at 7am. Things are NOT coming out and as I told the NP today, he should NOT be eating period until this is fixed. But that will never happen as long as we are home. He is still pooping and peeing in the toilet about 75% of the time which is helpful but today all the poops were screaming episodes which really grate on my already frayed nerves and make me violently angry that we still have to deal with this. Mary sent me a note today to see what was up and how she can help which was nice. Nice to know someone in the medical establishment hasn't forgotten Samuel. She is ready to help us make flight plans as soon as we have a date. I am not looking forward to flying, but have justified it in my mind as either we will get his butt fixed, or we will be living with Delma. I am also not looking forward to going it alone, but living like we are now is so bad, that that sounds like a picnic in comparison. It would be so much easier if Mark could take Samuel, but Samuel cannot live without me and I cannot live without him. I could never be away from him that long and vice versa. It would be worse on him and I than us going alone. The really big downside is that Anna will be weaned before she is ready, but what do you do? I cannot keep up my milk at this point pumping so it will be gone. I guess that is fine, I am half heartedly ready to be done anyway, right up until I think of it being Samuel's lifeline and that in the early days, it probably saved his life. After the first round of chemo, when we went home for six days and then he got pneumonia, I was able to get some of my milk into him and suddenly he had an ANC which was shocking to the doctors there. The first two nights we were there everyone thought it was a very dire circumstance, and I recall one Onc saying that with his ANC up, he felt hope when he had had none before that Samuel would turn the corner and recover. I guess we will never really know which things helped and which things were miracles. Having breastmilk at the right time was a miracle from God. Being able to nurse a baby is a miracle from God when you know you are giving them so much more than food. In Samuel's case, it might have been lifesaving, well, I take that back, I believe it did save his life, many many times over So, it will be bittersweet.

5/28/06

Going with the advice, "if you cannot say anything nice, don't say anything at all," I have felt the need to NOT update. You could just read back over the last few months of bad gut updates, pick a day, any day, we have had the gamete of good bad and ugly. Friday I heard from no one. No one called, returned calls, answered e-mails, nothing. The reprieve has been that for the most part, Samuel has been pooping in the toilet. He is so proud of himself and I am happy because he is sparing himself a lot of pain. Popsicles are the magic reward! The dilation we managed to do did seem to help a bit. Between that and the clear fluid diet, we got some relief. That makes me suspect that his anus was a lot smaller than a 10. Yesterday was pretty bad and this morning I tried to just get my gloved pinky up in there since I can at least feel resistance. I had very little luck, it is just really small. But even that little effort seemed to pay off in a small way. Things this morning were pretty awful and this afternoon are a bit better again. We are battling the hunger/vs no hunger off and on depending hon how well things are moving through. Our hope is that Tuesday we will start getting some contact with people since there will be no excuse for them to not be at work by then. Talk about desperate, I e-mailed our former Onc from Seattle to see if he had any recs for a PCP up there so that we can have an advocate. This kind of crap would not happen if we were being seen by our former Onc, at least he knew when we said something was wrong, we knew what we were talking about. Course it took some time to "train" him. And now we don't really need an Onc, which is one of the reasons I have always wished our former Onc was a PCP and not an Onc. We told him that once and he told us that being a PCP was just not challenging enough. Jokingly of course, meaning people like us. When we parted company there, he told us to let him know if we ever needed anything in the future....we will see if he meant it. I have certainly run into many who offer help, but never intend to give it, just sounds good on paper.

Today is the two year mark of Samuel losing his colon, appendix and cecum. Two years in a row now we have gotten to this day and still don't have the situation under control. We took some time to remember that awful day. We looked at all his scars, remarking on how they have moved as he has grown, lessened, or turned completely white. Samuel had had his cecum tubed and drained the night before as an emergency measure. I had been home for three days following the lung collapse episode in which we were left on the floor for at least 8 hours before anyone got serious about it. That was pretty much the last straw for me and ended a three week vigil. That was one of those nights where we were just lucky. Samuel was lucky that he is so strong. I was lucky that the staff who were trying to help us were so good because I wanted to kill the PICU doc who left us hanging and treated all the floor staff like they were idiots. The difference between Children's and this hospital was at Children's there are always people, doctors, on the floor. Here there was no one. The PICU doc was apparently too busy with another emergency to care for my son who could not breathe. I literally carried Samuel downstairs from the PICU at 2pm. He cried and was in so much pain it was unbelievable. My mom was there that day, it was a Sunday, her day to come in, Mark's day home with the kids. Someone needed to come in and help with Anna. I wanted to much for him to be satisfied and happy to be finally in my arms, but he was frantic to be put down in his bed. It broke my heart and hurt my feelings. As the hours passed all his vitals hit the roof until they had to come and reset all the alarms to stop them from beeping constantly. My mom stayed with Samuel while I happily moved all my baggage from the apartment to the room. She went to get us dinner and by the time she got back, he was completely inconsolable. Just in pain, agitated, trying to pull off all his lines, pretty bad! They upped his morphine and ativan and even that did not help. My mom always waited until I got Anna to bed and then left so about 8pm she left. It was always scary and I mean scary to be there alone at night. Especially when going into the night, things were obviously not well. By 11pm I had my RN in the room with me, not leaving waiting for respiratory failure. He was on 4 liters of oxygen and still unable to sat in the 90's. he refused to let anyone put the canula on him so I was just holding the blow by near him. The charge nurse came in to introduce herself and let me know she was going up to the ICU to get the doc. An hour later an RT came into the room to listen to his lungs and thought they sounded quiet on one side. Then x-ray came in. Five minutes later, the ICU doc came down to let me know we were going back up, his lung had collapsed. But as they always said, "He looks really good considering." So that was an easy fix, ended up being four chest tubes later though. Less than 10 hours on the floor and back to the ICU we go. Same room and everything, the one I was so thrilled to leave. Well, that did it for me. I could not stay with him in the ICU so I went home. The late night emergencies, the taking care of two babies all night in a strange place had taken it's toll. I called Mark the next day and told him to plan on me coming home. His mom came in and picked me up and drove me and Anna home. It was one of the most awful rides home. I am tearing up just thinking of it. Mark's mom told me that there were times when she came in and saw Samuel and did not think he would make it through the night. This day she picked me up was one in a handful of of times she came into the hospital and the only time I recall her entering the PICU. Mark's parents always had Kaysha and Daniel. I had never left in three weeks and I said my goodbyes and I left. There is not much to say to anyone so the ride home was pretty long and quiet. Just looked out the window at normal life going on without us, without Samuel. I cried, I prayed and when I got home I was a stranger in my own home. It was hard to do anything but walk from room to room, and call Mark every hour of every day I was home. I tried to talk to Samuel with the speaker phone but never got a response. Samuel wasn't talking much even then so when you told him goodbye, you got no response. All he knew was that he hurt. Drugs and TV were his out. God help you if you wanted to watch something. While he did not speak, he definitely noticed if you turned off Blue's Clues and he would cry. That was about all it seemed like he cared about. In a lot of ways, I left a baby who had barely turned two who did not even resemble or act like my child. I went home Monday and did not return until Thursday night when this emergency drain was inserted into Samuel's gut. We were led to believe it was going to be this big deal, but the big deal did not happen until the next day. I had to call Mark's sister to drive from Tacoma to get me and Anna and take us back to Tacoma. I was so happy to see Samuel and I guess he was happy to see me too, he cried for the first time in days. I guess in my absence he never said a word. That night was the first night in weeks that he actually slept well. Mark, Anna and I slept at the apartment that night. I will never forget coming back at 7am the next day to find that the surgeon was waiting for us. I felt like we were accosted at the door. We got the spiel of how this wasn't going to heal without surgery, and with all the upcoming chemo, the chances were even worse, etc. I was pissed. He actually looked good. I brought a bead toy sent by Keila in for him and he actually played with it. It was the first thing he played with in weeks. They whisked him away at 10:30am and he did not return until early afternoon, right in the middle of our "care conference." The op report from the surgeon ended it well before Samuel came back. Hearing him talk about an exploratory surgery that ended up uncovering such demise. No one was expecting it either. Every doc had been watching the labwork for signs of necrosis and there never was any indication. When Samuel came by the doorway of our meeting, I got up and left. Right in the middle of it. I did not care about any of them, only this poor child who had been gutted. I remember standing on the side of his bed crying and holding his hand, my Mom there trying to comfort me. Nothing was comforting at that point. Mark was just as stunned as we all but in his "rock" steady fashion, he was trying to be upbeat, or at least as upbeat as he could. It was awful. It was the first huge blow after the leukemia diagnosis. And just another blow in a long line of previous ones, and ones to come. Samuel had tubes coming from everywhere. Catheter in the bladder, ng suction in his nose, several chest tubes, his port, a double lumen line in his ankle all the monitor lines, BP cuff, oximeter, air bag, bandages over his newest scar etc. The one thing he lost was the oxygen canula. Seems gutting him made him able to finally breathe on his own. We had to leave him that night, just like all other nights in the ICU. I went home with Mark. It was so hard to go. The things we went through then have really molded us into who we are today. I haven't felt those awful feelings for a long time and for that I am thankful. I haven't felt that fear of what will happen next since being able to get Samuel home in 7/04. As awful as things have been of late, when you compare to two years ago today, this is just another day in the life. A life we lead at home. A life free of poison and all the rollercoaster ride that went with it. Don't get me wrong, Samuel's life is no picnic as it is now and I do intend to make things better for him, but he can walk and talk and love. He lives at home and it doesn't hurt for me to carry him. He is more my child than ever. He is the type of child we all dream of having. I don't have to wonder what is going on in his head because he has no problem letting me know. I don't have to leave him at some hospital or go visit him there. I don't have to wonder what tragedy will occur every night and I don't have to live in a 12x12 room with Samuel, and Anna. I will take today over last year. I would take last year over the year before. Here's hoping that next year today will be a day I will take over this one. Some days of late have felt like the walls were closing in, this was a good reality check for me.

5/25/06

Samuel's anus is a 10. We were able to basically get one shot at it last night and a size 10 went in tight and then bled. For Samuel, there was no easy way to do this. We basically forced him down and tried to hold him still enough to get it in without hurting him. He then sobbed for hours after telling us how we hurt him, hurt his butt, over and over and was inconsolable. Pretty much the way I knew he would be. So his anus is not even as big as a newborns being that theirs is supposed to be a 12. His butt is completely broke up, red, raw and bloody from the acid water. There will be no more dilating it here, that was a one shot deal. It is very discouraging knowing that had to get him to a size 16 to get all the old poop to come out. Now I know he doesn't have months worth in there, but by the same token, he doesn't have much room for this to be stored up either. It would not take much.

How hard do you think it would be to get in quickly and get Samuel's anus dilated? I mean, really, under sedation it would take only 5-10 minutes max. It is not like we all, meaning us and Children's Hospital, don't know what the problem is. It is not like they have to rule out a bunch of other stuff first. It is not like he is "constipated." It is not like they did not tell me we would need to come in for dilations if we could not do it ourselves. Right? Right? Is there any doubt in your mind that we know what the problem is and how it is easily fixable and would save us precious minutes, hours, days perhaps weeks of misery. I cannot believe the response I got after calling the NP on call. I basically reiterated all of the above and that we suspect is is closing and can we just get a sedation slot, rather than wait a week or two to get in and another week or two for a spot. Here is the response, on my voicemail no less since I missed the call somehow.

"What evidence do you have that he is getting backed up? What happens when you try to get a size 11 in? What laxatives are you giving him to try to combat this? "

HELLO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Oh, I am so pissed. I think we all, or at least I thought we all were on the same page regarding him NOT being constipated. I thought we all figured out if the butthole closes up enough, poop gets stuck and CANNOT get out despite ALL methods tried. Did this person even speak to the surgeon today, obviously not. Since this is the only person I have in between me and the surgeon, do you see the issue? So I call her back, get her voicemail and leave another message to call me, not answering ANY of the questions because I think I am going to blow up. I feel like a pot of water boiling over.

Mark reminded me this morning that this is a holiday weekend which means that we are just screwed period. I e-mailed Mary to see if our current Onc is around and can just have the procedure done there, meaning perhaps he could speed up the process with someone there to do this "simple" thing. Well, he's on vacation for the next 10 days and our former Onc is on call. So that is a dead end too.

To make matters worse, I have not heard back from Cincinnati either and talk about mixed up orders. The Cincinnati Dr. suggests a constipating diet, which as we know, it is impossible to constipate someone without a colon who is on a liquid diet. And Seattle wants him on laxatives for the rest of his life until they can get around to seeing us with their busy schedules.

Now, all of this would not be that big a deal IF Samuel was not pooping acid around the blocked up poop which now cannot get out due to the small anus. It would not nearly be so hard to swallow if he was not in pain because everything coming out of his butt now is like acid no matter what we do. It would not be so bad if he could sit comfortably and did not walk like he has a stick up his you know what because rubbing the butt cheeks together hurts. It would not be so bad if he wasn't trying to eat and eat and eat because his body is now trying to compensate for things being wrong. It would not be so bad if the puke cough was not back. How in the hell do you explain this to someone who is not with you daily and get them to UNDERSTAND that I know what the hell I am talking about. I knew things were wrong almost the instant they went wrong. Every poop requires a bath now because that is the one and only way to get him clean and relieved. As I think about this going on for weeks again, I just want to cry. In fact, it is all I can to to not break down tonight. We could go to the ER and take the chance that someone might listen there, but most likely we will just get sent home with laxatives because they will decide he is constipated and not even bother to call General Surgery. I just don't know what to do. Here we are going into a long weekend and there is no help. For all I know the doc in Cincinnati may be gone too. He usually answers e-mails very quickly so there is nothing to do now but wait and watch Samuel suffering knowing that there are people who can help him now, but are too busy to care.

I hope this person talks to the surgeon before calling me and just gets a date because I am pretty sure I am going to tell her off if she continues to ask stupid questions. They just need to dilate it so he can poop again. They need to do it now. There should be NO question.

I am tired of watching Samuel suffer. This has gone on too long. It is killing my insides thinking of how much longer we might have to deal with this. Please pray that someone there gets a clue and we get some help. If not, I can tell you that a lot of people are going to get an earful of stuff that they do not want to hear because I am sick and tired of waiting on them to find time for us. Samuel does not have time. For all we know, he could be living out the last days of his life and this is not how I want to remember them being spent.

5/24/06

I have hesitated in posting an update because I wanted to be sure...and now I am. After less than seven wonderful days, the gut issues for Samuel have started in again. All the issues we left behind are back...the hunger, the grouchiness, the stomach pain and lack of poop, or just nasty water when it does come. If you just read this and cannot even believe it, then you can only imagine how we feel. Like we had a small vacation and now back to cruel reality. We are less than two weeks beyond the barium enema which was the last time his anus was opened up to some degree. At this rate, we would need to go in for sedated dilations every two weeks. I have e-mailed the doc in Cincinnati to let them know of the new development and that they should just plan the anoplasty at this point. It would be easier now to fix this than to try to manage it every two weeks. It just absolutely sucks. Things were going great! Now we are left trying to figure out who to call, where to go, before this all gets out of control again. I don't want to deal with this for weeks again, I just don't. Samuel should not have to live this way either considering that he does not understand what is happening to him.

Yesterday morning, I thought something was up. By afternoon, I was fairly sure. By night, he was complaining of a stomach ache, a butt ache and asking to go to the "tummy and butt doctor." He hasn't mentioned this for a week. So he knows something is wrong too. Today I caught him sticking his fingers into his butt again too. I am going to talk to Mark about dilating it ourselves, or at least trying. Unfortunately you cannot reason with Samuel about his butt, and dilation does not work well when everything is clenched up. You run the risk of doing more damage than good, or even perforation. Both of these we would like to avoid, but at the time time, if we could at all relieve his burden, it would be nice to do so.

By the way, my ear finally drained yesterday. I stopped the steroids after three doses when I realized that they were causing nightmares. I have read this as a side effect for kids on steroids as chemo, so it did not surprise me. It did take two nights of nightmares to link the two. Once I stopped using it, they too stopped. My poor poor baby. It makes me sick to think of his months on steroids and him never being able to vocalize anything. We will never know what went on in his mind all that time. We do know he remembers much of that time, but it will haunt me always wondering how often he hurt and could not say so, was scared and could not speak or cry. The main indication he gave was peeing all over us when we would be changing a diaper and the RN came in. His eyes would widen and look terrified. But he never spoke. He could not speak. It is so incredibly awful to imagine all his thoughts during that time. I am just glad we were always there for him.

5/19/06

Things with Samuel are good! Seems like so long since I have been able to write that.

In the last 48 hours, other than at naptime when he is being fed, Samuel has peed in the toilet, every time without fail. In the last 24 hours, he has only pooped twice. Once in the toilet and once in a diaper while being fed, napping. He made it all night without peeing in his diaper and got up and went in the toilet. Yesterday, he probably pooped three times, and only once in the toilet. He is not screaming when he poops and we are all very thrilled! It things keep up like this, we do not need bowel management because twice a day is FINE with me.

Samuel is a lot happier, though some of his grouchy behavior is obviously learned. We are working on that. He is still eating normally, not non-stop which is a huge relief to us and our grocery bill. His butt looks great.

No news from Cincinnati but if things keep up as they are now, we will wait until we move to go in and save ourselves some cash. From what I have heard, it can take some time to get everything organized on their end so we will play it by ear for now. I haven't heard from our Children's Hospital either, no giant surprise. Quite frankly, a lot of nice less stressful days here would be great for all of us. One day at a time and so far there have been three really good ones.

All the kids got to go to Mark's parents this morning for the hour it took me to go to the ENT. My ear is still partially plugged but no one could figure out why. Why does that sound so familliar? It gets even better. One of the ways they test your equalitarian is to see if you get nystagmus. Well, since I normally have nystagmus, that test won't work on me. (I felt a bit like Samuel would if he was fully aware of his circumstances.) On top of that, the MD was not familliar with my eye issues so thought I should get an MRI to figure out why I have nystagmus. My mom just LOVED that. So I got a hearing test and a bunch of other stuff, and walked out with some steroid inhalant in the hopes that whatever is going on in my ear will clear up with that.

The kids all did great at Mark's parents. First time for Samuel and Anna to be dropped off anywhere. Seemed weird to be alone with Mark, LOL. Usually we have Anna.

We have found two homes in KY we both like for different reasons and contacted the agent for more info. It will be nice if they hold out for us. Neither are exactly perfect though, so maybe something better will pop up in the meantime. We are hoping to be able to start getting the house ready for sale since we took this last several month break from that as soon as Samuel started going downhill. How wonderful my life will be when he is potty trained! The last few days have just been so nice! I pray that there are many more in store for us this year and for years to come. Much love!

5/17/06

The ball is in their court. I let the doc know of my handicap and the issues it will cause with Samuel and I traveling alone and told them that if they can come up with a plan that is satisfactory and comfortable to me, then we will come soon.

The plan is to come for consult with him and his entire team, another exam under anesthesia to get a good look at his anus and if surgery will fix this, another barium study, daily bowel management and x-rays to be sure everything is going through properly and once that is established, the possible anal surgery to enlarge the hole and remove all the scar tissue. So the estimate is 7 days outpatient for the initial workup and scans, etc. Then inpatient, in his words, 3-5 days depending on how things heal up.

I think the seven days to get his gut under control may not be necessary since things have improved so much in the last few days. He has his ideas as to how things should function, and the diet to be followed and I have mine so there will need to be a meeting of the minds on that one. Trying to intentionally constipate someone who is mainly on a liquid diet has it's limitations. We have done a good job of doing just that when everything has functioned normally. And if no one ever has to mess with his gut from the inside again, the function will only improve with time.

I received this info this morning and basically this changed everything making me balk even further at going alone. It looks like if they can put us in their Ronald McDonald house, things will be fine for going to and fro several times a day. But if it is any farther away then I hesitate going it alone. So I have sent in my requests for help and accommodations while there and we will see what they come up with.

As I stated yesterday, it would be nice to go now, consult, fix his anus and get a prognosis from the "experts." No one here has really been able to give us prognosis on his gut as a whole as he grows and ages, etc. This doc feels that doing the plasty on Samuel's anus will replace daily dilations which incidentally we are NOT doing because of the trauma they will inflict. The barium enema was enough. There is a limit to how much pain and suffering "I" am willing to put him through. So if the surgery will repair it, great, we are all for it. The doc also said he will be happy to continue to be our doc once we move and do all follow up care as well as hooking us up with Oncology there to continue our labs/maintenance for his port. I definitely want to meet them beforehand to be sure everyone there understands we are NOT treating, period. And it is not up for debate. I don't want to have those type of problems next. Quite frankly, I want Samuel treated as if he finished his protocol, not like palliative care. I don't feel sorry for us at all, I feel sorry for the kids and families ON chemo. I would still rather go to surgery than go in for chemo.

So things look hopeful on this front. A total assessment by experts in the field is exactly what we need and will put my mind at ease as to what our future holds. Knowing we have quality care should we need it in the future is something not to be taken for granted. Getting all this done now would be great and make life a lot easier for us in the long run especially is Samuel feels better and we are not fearing his anus is closing. Currently Samuel is doing even better than yesterday, pooping less frequent bigger dumps, which is nice and means his pouch is working better. So as I told the doc, I am willing to manage things here if they stay like this until we can relocate if we have to. I would prefer to go sooner than later, but at this point, I know if it is meant to be God will make our way easy and clear. If it is too difficult, then I will know we just need to hold out. I am thankful tonight for Samuel's comfort. Other than the fact that he has had no nap, he has been pretty agreeable to everyone today.

Much love.

5/16/06

We have been officially invited to come to Cincinnati for bowel management and analplasty. The doc saw the scans today and thinks they look fine. We haven't "chatted" yet so I am not sure what we will do next. He figures it will take 7 days to get his gut under control and if analplasty is another 10 day stay....that is a long time to be away. And it looks as if I will be going with Samuel alone based on airfare and length of time away. That does not thrill me either.

We have made the decision that we are in fact moving that direction, either into KY or TN based on what is available when we are ready. We have talked a little tonight about putting this off until we get there since things have settled down with Samuel's gut. It is a long way from home with no support, and by that I mean Mark, not you wonderful friends who offered your help in any way. Living at the hospital is stressful especially when you don't know what is next. It would be so much harder being 2500 miles from home in a foreign place without my rock who cannot visit even once. If Samuel's gut will just behave and continue to heal as it seems it is, it might be easier to just have a scheduled sedated dilation in a month or so and hold until we can move. My other concern is follow up, which as you know, there is none here. If we have this done, come back and have issues, then what? The bouncing from surgeon to surgeon thing is not going to work either. Analplasty here has not been suggested and we are not interested in that option at this point. I just don't want to fly out, get settled in for an extended visit and find out on the first day that I hate it and not be able to get out. I am sure I am totally overreacting and when I talk to the doc IRL that might help a lot. But as it is now, we are leaning toward getting out of here asap, which won't be all that quick since there is work to be done. But at least on that front, our loan is approved for that and it is just a matter of waiting for the paperwork to go through. Then the time it takes to finish.

We have found several places we like in central KY so hopefully they will be available when we are ready. And if not, something even better.

Samuel continues to do well today. He has been a little happier, and gotten along better with his siblings. I think I have said "Be nice," a few less times. He has been in underwear all day today. We are working on potty training big time. He has had several accidents, and several poops and pees in the toilet too. The Doc in Cincinnati feels that he can get his gut under enough control that he would ideally poop once a day. Of course, it all sounds great on paper. It would open up whole new world for Samuel who has pooped at least 10 times today. I think this will improve on it's own with more time. I looked at the scans today before sending them on and I can clearly see where his rectal pouch was irritated. So it is basically not storing poop long enough. It fills and dumps. But his butt looks great and he hasn't screamed once about pooping. He also has been eating like a "normal" boy, not a starving one. I do think he has peed quite a bit more today than usual since I have ben sitting him on the pot. He will sit there, and seems surprised when something comes out. Of course all the while telling you he does not have to go.

I talked to our state Ins today about getting out of state services paid for. And it doesn't seem like it will be too difficult for all parties so that is a bonus at least. Good info to know for when we move as well. Thankfully, Samuel is on SSI. I don't think he will ever be able to get insurance on his own through traditional carriers due to pre-existing conditions. I would just like to be done with hospitals for awhile, I know that is shocking. I think some of why I am dragging my feet about jumping on a plane is that I am so used to the "care" here and constant frustrations. That and I don't like flying. Not at all. Unless it is my Dad flying, that is. OTOH, it would be nice to go there and try it all out, meet everyone to solidify our decision to uproot and move. The bad thing in that is, if this doesn't work out, we are out of doctors considered to be the top in their field.

May God lead us on and clear the path. Nothing about this has ever been easy. Much love.

5/15/06

I got most of my phone calls done before even getting dressed today. I should have the photo CD of all the scans in hand tomorrow. I am hoping to be able to just e-mail them first thing or just upload them to the site and send a page of the entire series.

I have an ENT appt on Friday, which is the soonest I can get in. I keep hoping my ear will unplug before then. Both my mom and I used to work for ENT's so the problem and process are not foreign. We have talked about this ongoing problem over the weekend and her thoughts are that it just needs to be unplugged as it can eventually cause hearing loss. Unfortunately, my ear filled up with fluid from my sinuses and the virus I had and it has been plugged for so long now that it probably won't unplug on it's own. If I have to fly anytime soon, I cannot fly with this plugged.

I heard through the grapevine today that if Samuel has an analplasty done in Cincinnati, we will be inpatient for about 10 days. They don't take any chances on the healing of the anus by letting them poop on or blow out the stitches. It would be so nice if this would solve our problem. The surgery itself is not all that invasive, just the recovery and tissue healing takes a bit of time. I should hopefully know more about this soon.

The big news of the day is that Samuel has been on his usual diet for over 24 hours now and his butt is almost completely healed, and his poop is looking pretty "normal" for him. I am really wondering if the correlation between the elevated WBC and the "irritated" gut seen in the last scan mean that all of the tissue was very irritated or inflamed when the poop was impacted, and it is slowly healing now. We know from unfortunate experience, that toxic poop can just eat right though the gut so who knows how bad things got before he was cleaned out. It is so irritating to think of how long getting to the bottom of this, literally took. We are probably luckier than we will ever know.

In the last two days, Samuel has stopped eating us out of house and home, he has been satisfied, is marginally happier and is pooping without pain. It would be so awesome if the problems of late were just irritated gut from the stagnate poop and not some kink or narrowing. He hasn't been eating tons of food yet so we shall see what happens. The irritated lining all the way through would certainly cause a lot of the issues we have had because it would not work right. It will be interesting to hear the doc in Cincinnati's interpretation of the scans. And of course, if they don't have to rip him open, once again, that would just be fantastic and an answer to prayer. I am thanking God for His protection of Samuel's gut through the last few months, that is for sure. It would be so nice if getting him feeling better were simply a matter of fixing his anus, once and for all. I am just glad that there is some relief, finally!

More, as we know it!! Much love.

5/14/06

This Mother's Day I have really taken some time to reflect on the "Big Picture." A dear friend sent me this note, " I cannot imagine the feelings that must overwhelm you as his mother. Your steel resolve is . . . . I guess it is what you have to do. But I cannot imagine the strength and energy that it takes to maintain that. I can’t imagine how you do it." It is not the first note like this and surely won't be the last. To say this has been a difficult journey will never cover the things we have been through. I always wonder when it will end, especially now as we contemplate the future and where we need to be, but I seldom ask why anymore. I remember wondering why in the very beginning, but then we just got too busy to ask questions we will never get a good answer for.

So what is the Big Picture? The Big Picture is that all of these children were chosen for me by God. He has a reason and He has a plan. I like to think He chose me for Samuel because He knows I am stubborn. WHile people may not think this is a great quality, it is one that most people who know me IRL will always mention. I don't take no for an answer, love to hear people say "you can't" only to prove them wrong and say, "I can." God knows that I have learned many times that just because I cannot SEE something, doesn't mean it is not there. I will look at things with other senses than my eyes, and I will walk by faith and not by sight, maybe more than the average person, because I have to. This holds true now more than ever. He gave me a lot of gifts as a person that I am thankful for, to be able to handle this on a daily basis. How many things have we KNOWN were wrong even though no one saw them? That one really struck me today. How long did we have to try to think and act on behalf of Samuel when he could not tell us what was wrong? I know this boy's bodily functions even more than I know my own it seems. When you don't see well, you tend to listen more, look beyond the surface and think things through. I think I am more analytic than most and have always felt I had a good BS radar. These days, we don't ask why, but do ask how we can make things better. Better for Samuel, and for our family who has certainly suffered enough. How long is that going to take? I pray that the feelings I had at the beginning of this year are correct, that this be the year of Restoration for us. Not next year, not the year after. I refuse to believe we will just keep getting hit by the brick walls on every side. Mother's Day four years ago, I had a three week old baby Samuel and I will never forget thinking he was the best Mother's Day gift ever. I would not trade this baby and all his medical issues for anything. The suffering, the sorrow, the continued failures of man and all the days of fear will never compare to the love and joy this child brings. What keeps us going? Samuel. The very fact that he can still manage to find some joy in each day in spite of living in pain keep us motivated to do whatever it takes, go wherever we need and wait on God to reveal His plan. I long for the days when I can just sit around, bake, play and watch the kids learn and enjoy life. I long for the days of planning trips to do something fun, not to hospitals. Planning what things we want to grow in a garden, not making lists of phone calls to be made. I long for a more simple life where Samuel can go out to his pond and chase his ducks. I long to be able to see my horse and think it would be cool to move to a place where me using him as a form of transportation would not be out of the ordinary. I hope it happens soon. We will keep plugging away at it. There area always ups and downs, but if we knew all we had to do to climb the big mountain, we would have certainly given up long before now. It is hope of something better that keeps us getting up and going through the motions. It is faith in God to have a great reward for this awfulness, faith that it has not all been in vain. I like waiting on God to work out the impossible, I know He is faithful and He will as long as we are listening.

So I got a response yesterday from the Doc in Cincinnati about Samuel's bladder function and he thinks that once the gut issue is resolved, the bladder will also be. This was my impression from the beginning until our Surgeon questioned it. So it was nice to hear someone say, "I am not surprised." I am hoping to get the scans e-mailed direct tomorrow so he can see them promptly. His thoughts upon seeing Samuel's anus were that he might need some plasty work instead of dilation to enlarge the hole. That might fix things and stop the closing permanently. As for his poop/acid issues, they continue. It is my hope that he will see a reason for this. As I wrote above, I don't have to see it to know it is there. Maybe it is just irritated tissue from all the impaction and it will heal up and behave over time. It seems to be a little better right now but we have not let him eat a whole lot by mouth to set things off. I have him back on his normal tube diet today for the first time in months so we will see how it goes. He is still pooping out food from yesterday's batch though so things are coming out slowly still.

Today we went on a family hike and picnic. It was nice to get out of the house. Samuel walked a little at first and then got tired. So I had to wear him. On the way back, he did really well and walked the whole way and reminded me of the Trailsman he was last year in the Rain Forest. He is definitely more tired these days than then. Anna never needed to be carried and had energy to spare.

Tomorrow I have a nice list of phone calls to make. A few about Samuel and one for me. My ear has been plugged for several weeks now and instead of getting better, it is worse. I think I will need to go have it unplugged, which sucks since we don't have lots of money to spare for this. I kept hoping that my ear would unplug for Mother's Day, but it has not. So yuck to that! But I would like to be able to hear again someday, like tomorrow would be good.

Happy Mother's Day to you! Take some time to think about your own "Big Picture." Our children were hand picked for us. How awesome is that?

Sending out lots of love to you all tonight.

5/12/06pm

Today's study just leaves us with more unanswered questions. First off, the "sedation" was versed and while it make him feel loopy, he woke right up to someone putting something into his butt. He was not happy. They could not use the standard size and had to size down since his anus is so tight and of course, he wasn't helping one bit. He screamed the entire time. While waiting for our turn, he peed a very full diaper, which made me happy because they would actually get a few pics without a full bladder. Well, upon sight of the first x-ray, his bladder was full, not five minutes after the full diaper. They asked him to go to the bathroom, but of course he denied having to go. So that is troubling. Also, no narrowing was seen but there was some tissue abnormality, either swelling or something irritated in the "colon". I put that in quotes because he has no colon and the Radiologist viewing the scans did not know were his pouch was joined to his ileum so it could have been small intestine. Of course this scan wasn't perfect because of the bladder. The photo CD I was told I could get no problem, was a problem and we did not get it. Now it is too late to do anything but wait until Monday and see if they can e-mail the scans. We did not leave there until after 4pm and did not arrive home until 6pm. Samuel was VERY mad.

So we don't know any more really than we did yesterday other than there is no narrowing showing up. In our history, that does not mean that there is not one. His initial x-ray did show air all the way through the gut, so that was a good sign.

Mark ran into the surgeon today who was wondering if we had an appt to see him or not. Once I got home I had an e-mail from the doc in Cincinnati who said he got all the records from Children's today and was able to go through them. He then SPOKE with our surgeon about Samuel further. How cool is that? I am sure our surgeon is wondering what the heck is going on getting two calls from other states and other doctors about Samuel within a week of each other. He thinks he can help us but wants to be sure there is a clear plan before we would go. He needed pics of Samuel's anus, and oh weren't those awful to get. It is looking pretty bad currently. He also still wants both scans, upper and lower to go over so hopefully I can get someone on that Monday,. Other than that, there is not much else to report. It was feeling like rather a crappy day, again, until I arrived home to see that someone has our back and is working on it, from afar. Baby steps in the right direction. Of course I just want things to be okay overnight. If all the scans show NOTHING, then we should have no problems, right? Wrong. I realized tonight that I have been giving Samuel almost double the amount of feedings through his tube, in addition to the almost double amount of things he eats by mouth....he should be huge, but he has simply maintained his weight give or take a pound depending on the time of day you weigh. It is like he is losing half of it. As I said, more questions, questions that need answers.

I only know to pray for direction and that God will show us the way quickly. Samuel needs relief. I would like my sweet happy boy back...you know sometime this year!

512/06am

Today is the day for the lower GI study, the one we hope shows something so we can get a plan of action instead of continually being sent away with a problem "we" know we have. I am glad I requested sedation for this as his buft is really sore. Yesterday was pretty bad and the night before we were up quite a bit of the night with a sore butt and painful poop, when it did come. Today he is back to just not going at all. The eating instructions were a bit more lax today so he can eat until 7:30am which is creeping up fast. Clears until 11:30am and there is a fresh pot of stock on the stove. Then 1:30pm is our time and according to the surgeon, it should not take long, maybe 15 minutes after the enema is done. The plan is to get the photo CD when it is done and leave unless they find some reason to detain us. I would like to just e-mail the pics to Cincinnati if I can though I don't know if he checks e-mail over the weekend. At any rate, the sooner we know something the sooner we can get some plans into motion.

I went back to the journal history from January and early February so I could remember what life was like when things were "good". I wrote that Samuel was happy. I forgot what that was like for the most part because he has been angry and grouchy for months. Long enough to wonder if this will be a new behavior issue even once we fix the problem. Now, I don't blame him a bit and try to keep everything in perspective when dealing with the outbursts, but I think we all forgot that there was one good month in this last nine. Today is the 9 month mark of the take down and I can only remember ONE good month. We have never made it beyond 9 months of any gut surgery without needing another. My mind even wandered back to the stoma life yesterday, which was no picnic either, but at least when things with his gut were wrong, it did not mean he could not sit down or walk or play. For the most part, I knew things were wrong and he just went on with life because he wasn't bothered.

Now this time is very different being that his hunger is insatiable even though we all know he is full. It is like there is some malabsorption issue somewhere and he is overeating to compensate. The other thing is the obvious pain and bad mood associated with the need for relief or the need for food since he thinks he is starving. These things need to be addressed because they alone signal a problem of a different sort. I read someone's account of what life was like when her small intestine failed and some of the things said were startlingly similar to how Samuel feels. The hunger despite eating everything on earth, the tiredness after small tasks, the moods.

As I sit here this morning, I pray that we get help soon because I don't like what I am seeing, and I don't like the gut feelings I am having about it all. Pray for us today. Much love.

5/10/06

Labs today.

WBC 10K

PLT 479K

HCT 33.2

ANC 4000

Samuel's labs have not been this high since his last large dose of IV methotrexate. His marrow always overcompensated for chemo. Another reason for higher than his normal values would be if he was sick, which he is not. So, the last reason for his labs being elevated would be something wrong on the inside. Way back when we had shunt malfunction and fluid everywhere, his counts remained high even though a lot of the time he was without fever. It wasn't until they finally got a shunt that worked and relieved the hydrocephalus that his counts dropped down. Now, don't get me wrong, these values are still within "normal" limits. But Samuel's averages as of late have been WBC between 5-7K and ANC in the 2000's. I think his body is trying to tell us that something is still wrong, duh! These were faxed to me today and I am saddened to see these going up and just hope that we get relief before we have a bigger problem than anyone expects.

On a better note, his blood chemistries are still within normal limits with only a small rise in creatnine, which was our ticket into inpatient status once upon a time. Otherwise, all electrolytes are good, no liver dysfunction, etc.

His port refused to draw today so we stayed long enough to TPA the line and get it functional again. We spent a little time at a nearby park. Samuel had fun, but he tires very easily and becomes grumpy at the drop of a hat. It is not so obvious at home but is rather obvious when we are away. One minute he is fine and the next he just wants to go home.

His tummy bothered him a lot today. Yesterday I did another of my experiments with carrot juice to check transit time. Carrot juice comes out looking only slightly darker. Well, 22 hours later, it showed up, only with black tar streaks. More old stuff. As I told Dr. Feltis last night, it only takes ONE poop to destroy the skin on his butt for days at a time. Today was that day. The last few days have not been totally terrible, but today has just been miserable for him. Since his bladder was mentioned, I have really paid attention to it. He did not poop or pee from morning until 3pm when we arrived home. This despite eating a bit and getting his tube feeds. There are just some days when I feel we would be better served in the hospital, yet we are here and I am his nurse. They admit us when we don't need them and won't admit us when we do.

I talked to Mary a bit today and she offered to help us get a flight should we need to go to Cincinnati soon. Mark and I talked today about if he needs another surgery, it would be nice to have it done there where the "experts" could give us their opinions. Currently Samuel says he wants his stoma back. I just feel like we would not be waiting this out if we had the right team asessing us, not someone pondering it in between transplants. I am feeling a bit angry tonight. I just put him to bed, early as he had no nap, and he has been in the tub twice trying to soothe his butt.

Samuel's study on Friday is with sedation, which means that he will not be able to eat or drimk from 9:30am until it is done, so after 1:30pm. He still thinks he is starving and wants to eat everything in sight so it will not be a fun day for him at all. Not a fun day for any of us, but none of these have been.

Things such. There just is not any other way of putting it. I pray that someone gets control of this before it becomes emergent. Those labs just are not making me happy right now.

Thank you for your prayers and checking in. Tomorrow is another day of waiting. Special thanks to Tori's "friend" who sent us a gift today. Much love.

5/9/06

Well, I don't say this often these days so hear me when I say it has been an exciting day around here. I sent off the first set of records to the doc in Cincinnati. Basically the horrible OP report of the colectomy and the path report of how bad the findings were. It also reports removal of a few centimeters of the terminal ileum which is part of the small intestine, the part if too much is missing, you cannot live without. So basically a hole was burned into the end of this too. I did not get that in the first few reads until my recent anatomy lesson. Nothing like a kick in the gut when you did not need it. At best he has lost several inches of the terminal ileum then with the stoma revision and hook up as they cut away and connect to a fresh spot each time. These are the only records I have on hand so I scanned them and e-mailed them directly to the doctor. I tried to fax them but I could not get them to go through so I ended up calling their office to find out about e-mailing them. The person I spoke with was extremely nice and when I briefed her on our situation, I was told again that we have come to the right place. She alerted the doc that I was sending records by e-mail and said he was very computer savvy so it should be fine. Within five minutes of sending them, I received a note back from the doc saying they came through fine. I also let him know that I requested our hospital fax over the other OP reports asap. Also, I did call them again today and finally got an appt for the barium enema study to be done on Friday. I was told I can request a photo CD of that study and the previous scans at the time of service. So depending on how easy the frames are to zip and e-mail, I may do that, or just ship it direct via USPS. I also let this doc know about the timing of these and when to expect these to come. He told me that as soon as he has the scans in hand "we should chat." So, as if that isn't exciting enough, there is still more.

Last week I looked up and contacted the office of the former Fellow we had at Children's who actually gave us the time of day. He is in Minnesota now. I was not able to speak to him directly, but sent to the director's voice mail. I just asked if there was a contact e-mail where a former patient could ask for a referral. I left my name, Samuel's name and mentioned that I was sure he would remember us. Well, tonight I get a call from this doctor himself. We probably talked for 30 minutes in which time he disclosed to me that he had contacted our surgeon here in Seattle to see what was up before calling me. So he had a little idea of what was going on with Samuel and apparently our surgeon told him that he suspects a narrowing at the hook up joint and also supposedly "has a plan." Nice that he did not bother to let us in on it.

He was surprised I found him and thought I had to do a little detective work in order to do so, so I guess he figured out right away that me calling meant something was up. When I relayed to him basically all that has transpired in the last year since has has been gone, he was pretty unimpressed to find out that our needs are not being met here and that we have been dropped like a sack of potatoes. I told him I wanted to get a referral from him, someone who knows us, to someone who can manage our case as he said, "competently." We have had more than our share of incompetence, that is for sure. I told him about the doc I am talking with in Cincinnati and he immediately knew who they were and said they were the best. But at the same time, he is really not happy about us not being able to get the care we need here and since we have had our current surgeon for so much already, he thinks it a shame to have to move on. The bottom line is that he feels we should be able to get the help we need here, and it is unacceptable that we cannot.

We reminisced about past issues in which I reminded him that in every instance, I knew there was a problem and have never been wrong yet. He agreed and further agreed that Samuel is such a special case that SOMEONE should be spending an hour a week with us if needed. He asked who we had at Children's to advocate for us and when I told him that we had no one, he is making it his mission now to get us someone immediately. I told him that we had come to the same conclusion as well, that someone else needed to be on our case to prod the surgeons along, but that no one had returned my calls when I called to get a referral from the NP's. He could not believe that we were never directed to a GI there after the surgery and that no one followed up. I told him about the GI we saw here who I thought was good until this and that it was the General Surgery NP who got us in there. But other than that, no one calls, returns calls and you have to be a butt to get an appt. He told me to expect people to start calling and I told him that that would be a switch. He is also going to be contacting the chief of the surgery staff and our surgeon again to relay my frustrations, which believe me, he heard them all. I left him with this jewel, "Either they are too busy with patients they can actually fix, or we are palliative care and a lost cause." I guess I won't have to file that grievance after all because you can bet he will do it for me, MD to MD which as he says, is a whole different ballgame.

This is the surgeon whom I have always referred to as renegade, because you can talk straight to him and he gets things done no matter whose feet have to be stepped on to do it. He changed our orders several times against Oncology's advice back in the days of the wrong team managing our care and boy were they mad. It was always good for some comic relief while being stuck there. He made a special trip to the ER and had me just page him direct when we were concerned about anything with Samuel's gut. He was not too good to speak to you outside of the room your child was in. He sought me out in the cafeteria several times to just check on Samuel as well as was pissed when we were admitted and he was not notified.

So anyway, I was a little surprised to hear from him, but quite pleased at the same time. I am also a bit sad because this is the kind of doc we need, you know, one who actually gives a crap, calls you from another state and not only that, is going to follow up with ME next week to be sure we are getting the help we need and deserve. Pretty wonderful person in my book. If you are in Minnesota and need to consult with a pediatric general surgeon who actually cares, you can do so here. This fine man is Brad Feltis, MD. If you ever go, tell him Samuel sent you.

Anyway, that was just really really cool and I can only pray that we can find someone like this who can see us when we need it without the hassle and run around. His last comments to me were that our surgeon is a gifted surgeon and thinker, but lacks the bedside manner with parents. He says that HE doesn't have near the amount of experience that our surgeon has, but CAN talk to parents. For anyone who thinks this is not so personal that we don't need that effective communication, think again. We do. Samuel is not a chart, he is not a number, he is not a "time bomb" who is just going to die so why bother. It is so irritating to even have to think people, doctors, would think this way. I don't care how great s surgeon this man is, Samuel is a human being who deserves respect and compassion for everything he has endured.

Okay, next, I could go on about this call for hours and just might. It really picked up my spirits to know that there is someone out there how knows us that is willing to go to bat for Samuel even though he is not responsible for us in any way. Wow.

Okay, moving on, really....

I want to thank you all who have e-mailed to let me know your location and offering help. I am overwhelmed by your support and graciousness. I don't know what we need yet, or if and when we will be going. A lot depends on Firday's scans, if they see anything, or if the doc in OH sees something they are missing here. We might be making some decisions quickly, or they all may say the see nothing. That is my biggest fear so my prayer request is that God show very clearly if there is a problem so that we can figure out how to proceed and move on with our lives. We have talked about the prospect of flying to OH to consult if they think we need to. Mark suggested I go with Samuel, but I cannot go alone to a place I have never been before. I function just fine here, in my own surroundings, but I will be handicapped elsewhere. If we go, we both go. If we are going to move based on their being able to manage this, it would be nice to be in agreement. Anna will most likely come but Kaysha and Daniel would hopefully be able to stay here. I would love to leave Anna too, but don't think anyone can watch her....plus she is still nursing...yes, still!

Tomorrow, Oncology and labs, Friday Seattle for the barium study under sedation.

That is it for tonight, it is exciting to see things unfold and I pray that God continue to light our path so we know where we need to be. Thank you so much for your prayers and support. Much love.

5/8/06

Well, the Bellingham idea did not pan out as the doc there was not interested in seeing anyone under the age of 13. His RN was very nice to call and LMK rather than leave us hanging as so many here have. I still have not gotten a call from Children's in Seattle for scheduling the barium enema study. I called them again this afternoon and still have no appt. Samuel remains about the same. Some days better than others but basically very slow transit time, and either really hard, or water. And he is back to picking open his butt again.

The weekend proved disappointing only because you cannot call anyone and you cannot get any answers for anything. I did find a resource where everyone overwhelmingly recommended the docs at Cincinnati Children's. I was able to e-mail one of the docs today and got a prompt reply as the person who suggested I do this said I would. After giving a very brief synopsis of our history, his response was that he was "very pained" to hear of all we have been through and would like to help if he can. He needs all our OP reports as well as the recent studies x-rays to be able to tell us more. I don't know if this will pan out or not, but at least we have someone who is considered the best on the field looking. Someone who has dedicated his life to "butts" and at this point, that is what we need. As Monika says, we need someone who has seen the worst of the worst. While we may not be the worst, we have to be close. So the next step is to get them everything and get into our hospital to get the last test done. I still cannot believe we could just be left hanging like this.

We are seriously looking into either KY or TN to relocate depending on if the OH hospital pans out and if not there is Children's in Nashville. Locating ourselves somewhere in the midline of both seems like an okay idea as well. This is at least an area where we can afford the type of home/land we want. If it ends up that this doc who is e-mailing me can help Samuel, then we will get there as soon as we can, to meet them to be sure this is the place for us. The specialty services for GI and Colorectal are so far above anything available here. Both hospitals out rank ours in the ratings so things could only get better, or one could at least hope.

As it stands now, we need to get the barium study done so that we can get records to Cincinnati and have a second opinion as to how to proceed. I know if we are on the right path, things will just start fitting together perfectly. At this point, I am not seeing any options left in this state, or really any reason to stay here. It is so hard to wait sometimes......

Wednesday we are going back to Oncology in Tacoma for labs and port maintenance. I am contemplating seeing if they will order the study if we cannot get it done in Seattle. Supposedly it will only take 15 minutes to do so spending hours in traffic for a little proceedure seems dumb if we can avoid it.

Thank you so much for your prayers. Much love!

5/5/06

I received a call around 11am yesterday that our Surgeon was doing a transplant and would be late to our appt, but that we should arrive on time anyway, JIC. I should have known then to just cancel it, but was hopeful that something would be done. But instead, we have wasted another day, gas, time and money for nothing. What I got was a person too tired to hold a conversation and obviously too busy for us. He basically sent us home with an RX for Senna, telling me all the other laxatives they gave us really only work on the colon so try this and maybe it will work. Well, I already knew they gave us the wrong ones, and it is so irritating to have them admit they knew they would fail. He said he wasn't convinced we do not have a narrowing at the point of reconnection and the barium enema might show it better and they would plan on that sometime in the next three weeks. Well, I am sorry, but that is not good enough. We are all tired of this, three weeks is just impossible. The other thing mentioned was that if there is a narrowing, then they would cut and reconnect, but the problem is, he doesn't have a lot to reconnect to and as we learned from our previous anatomy lesson, he cannot effort to keep losing gut. Ileostomy was mentioned again as well, and we don't want to do that either. So it is obvious that we just need a new set of eyes that are not so busy and preoccupied to help troubleshoot at this point. I am not sure who that is but will be working on that today. To say the least, I am pissed. Yesterday I was livid. I am starting to think it is like the first two neurosurgeons we had, when they could not fix things and they required more surgery, they threw up their hands and sent us to someone else, not wanting to take a case they could not fix. In this respect, that was a good thing. If our current surgeon doesn't want to give this the time of day, the very least he could do is say so. I will be making lots of calls today to see what other options we have for help. There is one in Bellingham who comes very highly recommended by Mark's friend whose ex-husband has a permanent ostomy. Bellingham is about three hours away so if we go, we will be living there. At this point, I don't know if there is anyone at Seattle worthy of our respect and trust. There has to be someone who thinks that a kid living on clears for three months is ridiculous. In every way you can look at it right now, it just sucks. Bouncing around is not what I was hoping to do at all, but I don't see we have any other choice.

An interesting thing that the surgeon asked me was if Samuel has problems going pee. He said they pulled up every x-ray he has had there and every one show a full bladder. I told them that the only issues has has had were when he has had anesthesia or gut issues. His bladder and kidneys are working overtime right now just to keep up with the absorption of the liquid from his gut as things slowly move through. The other thing I remembered later last night was that with the original typhlitis, when his gut rotted and broke into pieces, he had to get a catheter then because he could not pee. I don't know if it was a swelling thing, a pressure thing, or what. We asked him at the hospital last week when it was confirmed he had a lot of pee if he had to go and he said no. I don't know what is up, but I am thinking if prior history is any indication, this is not a good sign, and something that needs to be pursued. But our surgeon left that the mystery chapter.

I am just about finished with my custom order list so will finish that up in the next day or so so that I can give my complete attention to where we need to go. We discussed getting a home equity loan to get the funds to complete the work on this house and perhaps pay living expenses while everything is up in the air. Pretty much neither of us is going to be able to work much if this keeps going. Everything is in limbo and it is not fair to anyone involved. Until Samuel's gut issues are resolved, our hands are tied and it is a very slippery slope if YKWIM.

Thank you for your prayers. Kristina's husband asked me last night if I have talked to the "Big Doctor" after I told him that the rest keep letting us down. I said that I do all the time. And he told me that I should just be comforted then that this is God's plan. No offense to Beto, but I know God's plan and that is for healing and complete restoration, not endless suffering and fruitless efforts. I cannot help but think that God's plan in this is to show us where we need to move our family to be able to get the best longterm medical care for Samuel. This has been our biggest question this year, where we need to move. We have all been too busy trying to manage things here and keep the lights on so maybe we haven't been able to clearly listen. So, hear this Lord, I am clearing my schedule, dropping everything so I can hear YOU. Thank you for your wisdom and provision. Thank you for taking care of Samuel when no one else wants to. Lead me in the way I should go quickly, Amen.

5/4/06

We made it to today, still home. Samuel is driving us all crazy with his demands to eat. His poop has changed back over to a better quality since not allowing him to eat anything by mouth unless it is liquid. But yesterday, he went almost the entire day without pooping. Complaints of tummy ache, butt ache, and starvation continue at large and loud volumes. I have gotten a lot of work things done in the last few days, enough that I am satisfied that if we need to be gone two weeks now, I won't feel a terrible burden on my conscience as they are relatively new. It will be easier to demand they take him in and manage this without that on my mind I guess. A gut surgery is about a 7 day stay AFTER the surgery. And we know it can take 7 days to just get on the schedule and while I would really like to be home while they work out all the details, I know that could take even longer than if we are right under their noses. And I don't want to go, and I don't want to put him through this yet again, but I sure don't see any other way around this problem. He cannot eat, and hasn't been able to for months without reaking havoc on his gut.

If we go inpatient today, I will not be able to update this page for a few days because I will have to download it all to the laptop first. This usually takes an entire night while there. If you are not in the Announcement List, you will not get an update until this site is uploaded. Thanks to everyone for their care and concern and wanting to help us. We appreciate it so much.

Duty calls, there is still a lot to do before I can walk out the door. Pray that we are heard today. It sucks that I even have to ask that, they should LISTEN ALWAYS. Much love.

5/2/06

Lo and behold, we now have an appt with our Surgeon on Thursday at 3pm. I called them again this morning and interestingly enough, there was a slot that magically appeared. I appreciate those who sent hospital recommendations and just want to clarify that the other departments we have dealt with in Seattle have been fine. Nero, and Oncology never dropped the ball the way that General Surgery does. God knows you could not fall through the Oncology cracks if you tried and well, we tried. I cannot imagine anyone else doing anything with the shunt but Dr. Avellino after all we have been through. It just isn't as simple as moving and going to another hospital, I wish it were. Here is an example of what I mean. When I called this morning, I told the scheduler what Samuel's proceedure was last week and why we needed to get in now, you know, because his butt might close up again. Well, she did not get what I meant and asked about his butt. When I mentioned it has healed shut previously, she thought I was confused and needed to have some questions answered, so transferred me to the NP on call. I still feel pretty awful and what has been most annoying is that I cannot seem to keep my train of thought for long so trying to have a lengthy discussion about things with Samuel has been a struggle. I am never like this. My throat still hurts and it is still hard to speak very loud and my ear is partially plugged, so it is still like talking to deaf people, both here and on the phone. Anyway, this is the person you have to go through to get an appt so you might just imagine what it would be like in a new place where no one knows you. I just roll my eyes and wait for someone who gets that yes, this thing that seems unbelievable DID in fact happen, no I am not confused. Maybe they think I sound confused because of this stupid virus thing, who knows. We went back to our previous GI who knew a lot of what we have been through and though I explained it to her quite vividly, she obviously still did not get it based on her diagnosis and treatment plan. We need to know WHO we are seeing and know that they will take us seriously. We need to find someone we can stay with and stop moving around if we can at all make it work , at least as far as the gut issues go.

So that being said, they did get an appt for us. Later, the surgery scheduler whom I spoke with last Friday, you know the one who was supposed to call me back? She finally called. I guess because the appt that was made for us was not in a good time slot so she wanted to move it. She asked how Samuel was and when I told her, she moved our appt again to a larger time slot because maybe FINALLY someone gets that this is a problem. In her words, "you have a major GI problem going on." Gee, you think?

Things have deteriorated rapidly between yesterday and today. Samuel did not poop all day despite the fluids going in. When he did early this afternoon, it looked like snot. Yellow snot. Mucus everywhere, the kind that makes him scream bloody murder. The scheduler asked me what was coming out and when I said it looked like snot, she knew exactly the color and texture without even asking and obviously knows this is not a good sign. Samuel has been pretty much miserable today. His entire butt, cheeks, testicles and penis look like a burn victim. I am so tired of this, imagine how he feels. I see a morphine night ahead.

I did ask this person, who says she has worked for our surgeon for many years what I should do about his busy schedule and our needs being met. When I mentioned talking to another person there who thought I was confused about Samuel's medical history and how difficult it is going to be to find someone else who gets it, she told me that she would not change if she were in our place with the history we have. She explained to me some of the issues going on at Children's with the move to the new side, the scheduling, and some of the other things that were "supposed" to make me feel better and I would really like to feel better. But I won't unless we actually get some action. I explained to her that we were unable to stay inpatient last week because I was ill, and still am ill, so trying to work this out has been quite tricky but the fact that they don't even follow up is aggravating to say the least. So I don't know if we might see some difference or not. Let me clearly state that I don't want to have to change doctors at this point if we don't have to. There is just too much history. But they better get on the ball from now on, this has gone on too long.

So, all that said, we just need to be inpatient and they need to manage this. I have worked like a madwoman to get things done here so that I can leave and feel like it is okay to do so. I don't know what we will do as far as juggling everything because of course, nothing is ever perfect when you need to live at the hospital. This has been a long journey with a lot of downs and a lot fewer ups. I was really hoping for zero days inpatient this year, and certainly thinking we would not be opening up his gut again to fix things. I am praying that I will be feeling better by Thursday, and be able to get through tomorrow here and not need to go to the ER so I can continue to work and get done. I just keep hoping and praying that it would resolve and go back to normal, but after 2.5 months, we are still dealing with the same problem. Honestly, I just don't see how this won't end up as another surgery to find the problem and fix it which will mean some QT at the hospital. I am trying to mentally prepare myself for that as well but will feel a lot better if I go in knowing I am staying instead of being surprised. I think I have lost ten pounds in the last week because either I cannot eat because it is inconvenient or I feel too sick to. Wonderful crash diet.

So , that is how things stand tonight, we appreciate your prayers for a speedy resolution to this once and for all. And of course, whatever that may be, that we handle it as we have handled all the hurdles that have come before. Much love.

5/1/06

Well, things with Samuel are still not right and my original impression is proving to be the case. They opened the hole and let the big stuff out, but we sill have a funnel effect going on somewhere slowing down the works. Today the puke cough has started again, not to the degree it was, but it is coming. He is complaining of stomach pain, and his poop is either super hard, or water and chunks. He would like to eat us out of house and home.

I am STILL feeling pretty bad. And even worse, everyone else was better and now they seem to be getting sick all over again. I know why I am not getting better, but not sure why they are all getting sick again. I bear the burden of the stress around here for the most part. My brain seems to have only two parts, one is Samuel and that takes up a lot of space and thought. The other is work and keeping things going around here. There doesn't seem to be room for much else and there needs to be. I cannot even take care of myself because I forget to in trying to do all this other. Normally, it is not a big deal at all to have both these things take up lots of my thought time, but obviously I need to simplify big time and NOW. Samuel needs me and I am only about half strength. Honestly, I would like to just lay down and never get back up.

Had I been thinking clearly before we were released from the hospital, I would have demanded they schedule all our appointments before we left. Currently we still do not have a return appointment despite calling daily. I am really at the breaking point tonight. I am frustrated, burnt out and sick, all at the same time. I don't want Samuel to get all blocked up again, and certainly we will have to do the very same clean out we just did last week before they can do any other studies.

Two nights ago while flipping through late night TV, I found a show about Children's of Seattle and the Transplant Unit for kidney, liver, etc. Our Surgeon was doing the majority of these because this is his specialty. He just happened to be on call when Samuel had the big bout of gut issues last year so we got him. It occurred to me in watching this that we just need to get another surgeon who has time for us. I realize that in the grand scheme of things, that organ transplant is a bigger deal than Samuel's gut problems, but at the same time, how long must he suffer? There has to be someone else who can devote the time needed to figure this all out and get it right the first time. I am just not sure where we need to go, or who. I was planning to ask our surgeon for a referral to someone else if we ever see him again. Honestly, Samuel's anus thing is a BIG deal. It is ridiculous that someone let that go like it was. Mark agrees that now his butt looks normal, where before it did not. I am thinking some surgeon needs his butt sewn shut for awhile so maybe he will get it. At this point, we need to find someone who we can stay with for the rest of Samuel's youth because going back and forth to new people all the time is not working. I don't want to see a bunch of new people to try to find a good one. I am burnt out on doctors to put it mildly. I know there has to be one out there with some common sense. The thought even occurred to me that we need to just move even out of state, if we need to in order to get someone good. I took the trouble of looking up one of the former Fellows from Children's whom I liked but he went on to Minnesota and there is no way we will go there. Colder than here....I think not. I am in the process of finding out where the Fellow they have now may be going this summer. She has actually followed us the longest and spent more face to face time with us, even more than the surgeon. But with our good luck, she is probably going to New York, another place we will not go.

I am toying with filing a grievance over our last hospital stay and lack of follow up because I think this is quite ridiculous but currently, I have way too much to do. We will obviously be spending some quality time there really soon so I might do it while we stay there. Tomorrow I will be making more calls to see who wants to work this all out. For now, I am dropping everything that does not need to be done, finishing up all orders outstanding so I can focus on myself, getting better, and getting Samuel fixed thereafter. Samuel needs your prayers and so do I. We have went through some really rough stuff in the past and I was blessed to be physically fine during it. I need that again and I need it NOW. Much love.

4/29/06

I am feeling somewhat better this morning and wanted to get a bit more of our week's events into this update. I do updates for all sorts of reasons, but one of the major ones is so that WE have a medical record of our own and so that one day Samuel will have a very detailed account of what he has been through. I update to keep all who are concerned and care up to speed. I update and share some of my most private thoughts so that Mark can read when I am done and any discussions that needs to be had, is. This has brought us closer than ever in a lot of ways and I highly recommend it for anyone who wants to have highly effective communication with their spouse. I update to keep myself sane, organize my thoughts and to keep track of time. I update because I want you all to know what the hospital system is like so that maybe you can avoid mistakes should you ever find yourself in their hands.

Samuel slept really well again last night. The strain his body was under is even more evident now that it has been released. He slept soundly and without torment in the hospital, on the drive home from the hospital and went to bed at 5pm on the night we came home. He has never slept this much or well for months. No coughing....at all.

When they dilated his anus, the Resident, who is the only one who gave us any report at all, said they took it from a size 5 to a 16 before they could get all the impacted poop out. Other than the big spread between these numbers, one would have no clue what this really means. I knew that when his stoma closed up, they had to take it from a 6 to a 12 to get it working again. So his anus was even smaller than his stoma at that point. Well, I did some looking this morning and found that these numbers are in millimeters, which I figured. The chart of what "normal" is is as follows.

Age of Child Hegar Dilator

1 to 4 months old # 12

4 to 12 months old # 13

8 to 12 months old # 14

1 to 3 years old # 15

3 to 12 years old # 16

More than 12 years # 17

So I think you can see that Samuel's anus was over half again smaller than a newborn's. No wonder he was having so many problems. I can tell I am feeling better because this really makes me angry to think about. My poor poor baby! This has obviously been happening over a long period of time. And today I am wondering if it was ever a size 16 at all. It has always been really tiny. I don't know if they intentionally left it small thinking it would open up with use but you can bet I am going to ask. Mark thinks the surgeon never talked to us because he is scared of us. Well this explains why Samuel has been sticking his finger into his anus trying to pry poop loose for the past few months. It is all so ridiculous.

Samuel is still pooping pretty firm poop. This morning he was screaming while going again and when I arrived it was quite a large amount. The look and smell of it thus far has been more "fresh" vs old like before. So I am not really sure if it is backing up, or if this is how it was supposed to be all along, but his small anus just made it impossible to manage from the hook up surgery to Wednesday....meaning, that from the hook up surgery til now, we have had a lot of problems that could have been avoided if this would have been initially done and we would have been given the tools to do it ourselves from there after. Looks like from the looking I did this morning, if you are into S&M, you can find a store and buy your own set of dilators......big sigh.

Time will tell and we will know if the puke cough returns. I am also not sure if the poop hurt coming out or if it was just scary because he would have had to push to get it out. Unfortunately the eating all the time hasn't subsided yet so I am not holding my breath that this is resolved and this is what normal should be and everything we have had to this point has been caused by a small anus. From the amount of cream we used to have to use from the hook up surgery one, I can tell you that his anus is quite a bit larger. Those suppositories we were supposed to use last year that we could not get in, well they would be no problem today. major difference. His butt also looks completely healed to me now. No acid or water period. So I guess I will give it a few more days to determine if this is okay, or not okay. I haven't let him eat any of the things we KNOW got caught up before and I feel anxious about letting him do so, but in the end, this is what we need to find out. Currently we have no appointment to return despite my phone call to them yesterday. I just love follow through. At any rate, if this is to be the new norm, and it is truly fixed, then that is good news from a surgical point, because he won't need any.

While staying at the hospital, we had our favorite RN's which always makes it better. After we were handed our room number, the Resident came in to talk to us about what happened and explained that the Surgeon had worked us in and had to run to another OR right after. She explained to us why we were staying, etc and what needed to be done. At one point, she apologized for "talking down to us" in respect to all the test explanations that we have done so many times before, but neither of us felt like she was doing that at all. She came to speak with us several times during our short stay outlining their concerns and we outlined ours, which were basically, it is easy to be admitted but difficult to be let go especially by this particular surgeon. My RN asked if we had any concerns about this admission and we said to both her and the Resident, that it was getting released. All this before Samuel arrived to the room so we had no idea how he would be. They led us to believe he would be pretty bad off and obviously with the amount of dilation, there was a lot of bleeding. This was obvious by the mucus balls that he passed later on. Monika's words will never escape me regarding these. They are a sign of bowel injury. Yes they are and they are acidy and burn like hell. Thankfully there were only a few of these before it turned to barium. Anyway, I know they got the message loud and clear based on the next day when they just let us go.

The first part of the barium study was pretty awful because Samuel was sitting on his sore butt in a wheelchair and pooping mucus. I stayed in the room and got Anna to sleep and waited for them to return. Then I remembered that they take an x-ray every 30 minutes so they would not be back. About an hour later, they did return because Samuel pooped and wanted his mommy. He woke Anna up so we all returned to the waiting area. He pretty much just sobbed and was angry. They took another x-ray and then left us sitting for an hour! We were ticked and Mark went to let them know. They did another and after that we let them know we were returning to our room and they could call us when they were ready, we weren't waiting on them. The Radiologist came running out then to tell us that we had to be back in 30 minutes and to tell our RN that his bladder was full and to do something about it. Now, normally, once admitted, you have to come and go to things like this with a transporter but I think they gave up on that idea when we left. Our Rn that day was Carolyn, who is usually a charge nurse, but doing her one day of patient inservice. I have had her a few other times as an RN, but mainly know her as the charge RN. So I wasn't sure how well she "knew" us. Turns out, she knew us very well which made for a nice evening despite feeling horrible. She brought Samuel his morphine immediately and did a bladder scan. His bladder was full of 370ml of urine. Over a cup and a half. The morphine worked well and he perked up a lot. He also had to be back for his antibiotic infusion which was over 30 minutes. So we were supposed to drag that pole back and forth some more. By then it was almost 3pm and I had not eaten so Mark took Anna and left to bring up back something that would get me through the rest of the night. I asked if we could be unhooked from the IV since I would then have to manage a wheelchair and IV and Carolyn said we needed to be back there well before the infusion ended. I told her they could just wait, we had to wait on them after all. She was fine with this. She unhooked us after it was done and we were off. We arrived and still had to wait another 45 minutes on them. Thankfully in this time, Samuel did pee so we escaped the dreaded catheter. They finally did the x-ray and said to come back in another hour. So we headed back to the floor, Samuel now a happy boy and visited Esther to let her know we were there. She knew we had been admitted but couldn't get a kid released in time to get us. Samuel was really happy to see her. She later came to visit with us after her shift ended. I told her it was probably a good thing she did not have us that night since we were kind of AWOL. She laughed. By this time, it was obvious to everyone that Samuel was fine. He was running all over, going out on the balcony and jumping on the bed. The Resident came into to check and was happy to know he did pee. She let me know that she ordered him a higher morphine dose based on what I had told her previously about his tolerance. She asked what we wanted to take home for pain meds and ended up writing us Lortab and Morphine which was really nice especially given he did not require any more morphine beyond the dose in his room. I figured they would not write for it, but she did. I told her I had some left from the take down surgery, like maybe two doses, and that it was nice to have in emergency situations like the midnight diarrhea fests that sometimes happen. Nothing else works at that point and if you don't have any on hand, it is especially hard to get unless you are inpatient. So I am really happy to have some of that in the medicine cabinet for emergency purposes.

We went back for our last x-ray and were deemed finished as the barium had reached the rectum. I was glad because I was "done" with them too. It was about 6pm by then. I had eaten the food Mark brought back, but either I was too sick and my taste buds were off, or it was not very good. So I did not eat much. They did not access Samuel's port in the OR but started an IV instead so I asked if he could take a bath with it. Carolyn put a glove on his hand, taped it all up and invited me to take a bath with him. And so I did. He had fun in their big tub and it was nice to clean up, right up until he pooped barium everywhere. We spent the remainder of the night eating popsicles and watching Land Before Time DVD's which are Samuel's newest favorites. The popsicles made my throat feel better at least for a little while. Carolyn told me that Brenda was taking us for the night and while she was a new RN, she told her that if she did everything that Jen says, her night will go just fine, LOL. By shift change, it was obvious to everyone that Samuel was fine. He has had a lot tougher things to recover from, that is for sure. They underestimate him, that is for sure. They hooked him back up to his IV at 8pm. Esther came to visit with us and stayed for quite awhile chatting. It was really really nice to visit. I was surprised she stayed so long since she was to be back at 7am and was calling to get us for the day. One of the nicest things about this trip was being able to tell everyone we were done with chemo, and done with oncology. Everyone understood and supported our decision, not that I cared if they did not, but it was nice anyway. These are the people who got us home and fixed initially after all the destructive chemo. One of the main impressions that Samuel left on them then was how frightened he was of all of them. They would come in and he would scream. All the while he could not talk, he could show fear by screaming and he did. This all disappeared once he was able to communicate again, I am not sure exactly when, but it did. All the RN's are so happy to be able to do his vitals now because he is so helpful and cute, rather than afraid. Esther used to have to put his blood pressure cuff on and then go hide to even be able to get one.

One funky thing that happened was at midnight, his blood pressure was 70/20. I was sleeping in bed with Samuel, and I think I got some of their pink eye because my contacts were nasty by then. I asked what it was on her third try. I figured it was probably 80/40 or something like that. When she told me, I was surprised but not worried. I wanted to say, "he drinks a lot of vinegar" But I knew they would not get that. She tried to rouse him and get a higher one but no such luck. She told me she would have to call the team to LTK and that they would probably want her to wake him up and see if it went up. I was not overly impressed as I was feeling quite awful by then. She came in a bit later and told me she would recheck it later. I told her that I have seen him do a lot of things and that this did not concern me. I guess they had a discussion about just that out at the desk because she told me that they were not going to be very concerned about it if I wasn't. Imagine how tired his body had to be of trying to rid itself of all that poop, the puke cough, the tormented sleep patterns, now it could finally rest. And if that gave his heart a break, so be it. The later check, it went up to 80/30 and they liked that number. This was the time I got the ibuprofen. I am so thankful that this RN, who did not know me at all, gave me some like she said, "as a friend." Thank you! I was ready to lose it and if I am crying about pain, it is major. I had four kids at home, no pain meds, and I never cried. As an adult, I cried about one bout of tonsillitis and later had them removed because of it. As a kid, I cried when I broke my leg. Other than that, I don't cry about pain. Like Samuel, I can take a lot. But I think, the events of the day, not eating and just feeling like we were going to be there forever, was about the breaking point for me. It was so obvious that decisions are just made in the spur of the moment for the entire day without even checking on the child to make changes. No one has time and unless YOU make them call and ask, they don't even think of it. I did not have the strength or train of thought to even pursue some of the things I should have. It was just good that by morning they let us go because I did not have the fight in me to go against them if they wanted us to stay.

I slept terribly waking often. They were in at 12am, 1am, 2am, 4am and we had the same room we originally got in June of 2004 when we arrived for the first time. I don't remember it being quite so noisy but it is directly in front of their supply room door and all they do is go in and out all night. I finally gave up at 5:30am and got up. Waited until 6am and was the first customer for Tully's. I grabbed a muffin hoping I could eat something and feel a little better. The Fellow was in by 7:30 and let us know their plan. I called Mark and told him to come and get us. Esther had us out of there by 10:30am. We were also able to visit briefly with Julie, which was nice.

Samuel did really well with the IV which surprised me since he usually hates them and tries to pull them out himself. The morning we left, he was still running all over the room and jumping on the bed. Esther peeked in at 8am and said she had a few kids who were a lot sicker than Sam to see first. Honestly, we were taking up a bed which need to go to someone who was a lot sicker. In retrospect, we did not need to be there. The IV antibiotic was available in Oral and we could have walked out with pain meds and handled it all ourselves. Mark was ticked that we have managed this all for months and NOW they want to bring us in, now that it is all fixed? I was too sick to care at that point but it is annoying. When we went there a few weeks ago with bags packed hoping they would do something, we were sluffed off and left to manage this ourselves. In retrospect, we have managed a lot over the past two years and quite frankly, I would like some credit from these doctors for the amount of problems we have been able to keep stable until they could find time to "fix" them. I do not want to be admitted and treated like we have no clue what to do for our kid after the "fix." I appreciate their good intentions and the fact that they were concerned about infection, but the fact is, that poop had been in there for at least two months and that alone is a major infection risk. Had we let him eat garbage galore and take in toxins on a daily basis, we would have had a serious infection. They probably wonder why we didn't. This is why I have tried so hard to get this poop out, and not allowed him to eat and build up the problem even more. Where do you think the toxins that are normally eliminated from your body as poop go if you cannot poop? They get absorbed into your bloodstream. This is why it is so SO important to keep such a close eye on diet for kids on chemo who are constipated and have no WBC. But do Oncs tell you this? No. From our experience, most of them have not a clue about the GI tract whatsoever other than how to destroy it with chemo and antibiotics. Several of the chemos are eliminated in the gut. If they cannot escape, then they just eat their way out. How do you think Samuel's colon developed all of those holes? Constipation and chemo eating it's way out. Not to mention the barrage of antibiotics they had him on and the crappy hospital diet. This is why when we finally had a choice, we went against their directions and chose probiotics over antibiotics for the year we were doing chemo. I am certain that it was all the good bacteria Samuel had in his gut that counteracted anything that might have wanted to grow in there over the past few months.

Esther and I had a conversation about how the system there works, and what the pros and cons are and I think we are a very good example of a lot of the cons. They are so busy that you cannot get in. They don't want to hire more surgeons because the whole reason the surgeons are good is that they are in such good practice. The more education you have, the farther away from the patients you are. It is the RN's who know most about the patients they have, not the NP's not the MD's. It is to your benefit to learn who the RN's are that are going to advocate for you and take the time to get to know you and trust you and then ask for them. Or get them to ask for you. They are your lifeline while admitted. They are the reason that orders get changed even if your MD does not bother to come to see you. They are the reason you get released, get good treatment, and get noticed, and remembered. They are the reason that people fight over who gets you on the next shift. They are the reason that one certain charge nurse "knows" us even though she hasn't had much personal experience with us. A good RN is worth more than gold in my eyes. And as I told Esther, and do every time I see her, she is the most awesome RN ever. She goes above and beyond, I trust her, she is my friend. She is young but has remarkable experience and insight. At our former hospital, I favored the older RN's just because they had more common sense. Esther is the best of both worlds because she is young and witty, but can get the job done with the instincts of someone who has been doing it for 30 years. Kudos to you, Esther. Lastly, when you get someone who is good, TELL THEM! Praise them for their service to you and others. I am quite sure the MD"s don't bother. I made it a point to tell the entire General Surgery Team who came in the day we left, that if I had Esther as an RN, I knew my day would go just fine because she was and is the best.

Of course my take on the pros and cons of how the hospital system works is that if more people took the time to be proactive about their own health as well as their children's, we would have a lot less sick people overcrowding the hospitals. I see and read about many problems which could be easily headed off or avoided completely if people took the time to educate themselves and not just go with whatever the "world" says is the right thing to do. Then when people are in a situation such as we found ourselves, the doctors would have time to help us immediately and know us well enough to know that we would not show up on their doorstep if things were not dire. Maybe then they could fix our problems instead of giving us half-ass solutions to just get us down the road a little father because they don't have the time to get it right the first time. More people need to figure out that in many if not most cases, the answers cannot be found from looking to doctors, or waiting on them. The answers are found by those who take the high road and look to God. I trust God for Samuel's complete healing because certainly man will continue to fail us. Oh, yeah, to get my last dig in, Samuel WAS NOT constipated!

4/28/06

Sorry to keep you in suspense. I am still feeling rotten and trying to get myself better so that I can function and continue to try to correct Samuel's gut problem. I got some good rest last night, unlike the two nights before, and have eaten enough raw garlic that if this virus is not dead, my stomach might be. I cannot believe that I still feel this badly but am thankful that my children are all rallying and helping out around here, and taking care of one another so that I can sit around and feel sorry for myself for a day. This update will be all over the place because I cannot seem to keep my thoughts organized for long.

The very short story about Samuel is that his anus was sealing shut again and his rectum had narrowed. They were able to open it all back up, but did so in a way that they felt would cause a lot of pain and trauma to the area after the fact as well adding a blood infection risk for sepsis. They cleaned him out well and got a lot of poop out, took an x-ray later which showed remarkable improvement of the problem. The Surgeon felt that given the trauma to the area and the risk for infection, that Samuel should be admitted for IV morphine and antibiotics. They also ordered an upper GI study with barium which happened immediately after he arrived to the room. We were basically running all over the hospital. Of course the upper GI showed nothing significant.

Samuel, in his true style, did very well given everything that happened and other than a few mucus poop problems, had very little pain. He only required one dose of morphine and I think now that he was truly upset about staying. He was not happy about being brought back to the room and the anesthesia they use always makes him very angry for a few hours. Then it magically vanishes and he becomes his sweet self again.

We, of course, assumed this would be straightforward and would go home, thus had no bags packed or any provisions. We starved all day, and had Anna with us so it was just not pleasant in any way. By the evening, it was obvious that Samuel was fine, and did not need to be there, but our Surgeon NEVER spoke to us at all for the entire time we were there. Not before the surgery, or after. Apparently he was really busy. I was and am still too sick to be pissed. I know I will be when I feel better. The whole staying inpatient was dropped in our laps. Instead of post op news, we were handed a room number by a person who had no clue why we were being admitted.

Samuel was obviously relieved. The puke cough vanished as I thought it might. He slept great that night, no coughing at all. The night before he coughed and kept us all up all night. His body was finally relieved of that burden. I was thankful for that because by then, I would have been little use to him. I got sicker as the night went on and of course Mark could not stay in my place as I could not just drive myself home. Between my throat feeling like I was swallowing over rocks, the referred pain in my ears and the headache, I could not sleep. I was near tears at 1am thinking I was not going to make it to morning. I asked our RN if anyone had any ibuprofen and she gave me some of hers. Enough for what I needed then and some for later. That was so nice of her. We did manage to make the emergency kit for the car after last week's issue and Mark thought he packed me some in my bag, but he packed Alieve instead. This does not work for headaches unfortunately. I slept a little off and on but basically had the clothes on my back so was just uncomfortable period. The Hot Mama Wrap makes an excellent nightgown in a pinch but still..... I thought in the morning I would be better, but I wasn't. The Fellow came in on rounds and asked right off if we wanted to go home. I said of course yes. So we left with the notion that we will be back next week for a barium enema study and to actually SEE the surgeon. How nice. What has been discussed with me by a Resident who was excellent by the way, was that we will now have to dilate his anus daily for probably about a year to keep if from closing up. I can tell you that this will just be torture for him and we will have to do it every day.

And while it would be nice to have this all resolved, I am afraid it is not. All we have managed to do is open up the hole to let everything that does come out, come out easier. The eating and no pooping problem continues and what is coming out is hard. If he had a colon, it would be fine, but he doesn't and his hunger cannot be satisfied so it is basically the same thing only without the two month build up of poop. I am sure it will just build up again at the rate we are going. The thing is, if the narrowing and closing up of the anus were the only problem, then in theory he should be able to eat, and things should be normal, problem solved. But we still have the same problem. I called the clinic today to be sure we don't fall through the cracks, and they have NO appt for next week, even though we were supposed to return in a week. And the barium enema which we were told might actually show a narrowing in some other part of the gut, is also TBD by the Surgeon, if we ever see him. I let the person I talked to today know that the problem is NOT solved and she better let them know asap and get us in. I am sure we could have stayed inpatient and demanded they figure it all out, but I am just not in a place where I can physically deal with it all. My body has certainly betrayed my mind and will, that is for sure. I pray that tomorrow is better and that by next week, I am ready to get back on the bandwagon.

The last thing that the Fellow told me the day we left was to call if there were any problems, "we are here for you...." Yeah, right. I wonder if they ever feel bad, when they go in for some proceedure which is supposed to be straight forward and then realize that there was some major problem that could have been fixed weeks before had they only listened to the mom. And then there is our GI in Tacoma giving us three months of laxatives. Had we done that and never went elsewhere, his butt would have just continued to seal shut. The thing is, it was doing it on the inside with scar tissue pushing it so to us laypeople, it just looks like it always has, small. Now, I can tell by feel, that it is plenty bigger than it was even after the hook up surgery. Of course, it will just close up again and again without continued attention. It is just all so wrong.

4/27/06

Our outpatient proceedure ended with an inpatient admit. We are home now. We weren't planning for a stay so had nothing for the night and limited computer access. Samuel is doing great. I am still sick and it was a rough night (for me) in the hospital. More later.

4/25/06

We have to arrive at the hospital by 7:15am for a 9am OR time. I hope at the very least that "i" feel better tomorrow because I am not looking forward to a long day in the car and waiting for surgeons to give us news feeling this badly. My throat is so sore that I am trying not to talk, and if I have to, not loudly. Everyone is walking around saying "huh?" everytime I speak to them. I think they all need hearing aids because I can hear myself just fine. Or maybe that is because my ears are slightly plugged too. You would think that if a person should have to deal with all of this, they could at least be granted the gift of good health. At least Anna is better today. Kaysha and Daniel just left for swimming lessons and will then go to Mark's parents for the night. Thankfully they are spared from the drama of tomorrow. Five people cramped in a 10x10 room is just more than I can handle. I know why Samuel finds the kids so annoying when he feels rotten.....I am guilty of it myself.

Samuel remains the same and today has been kind of a relief hoping that tomorrow might change everything. He still wants to eat us out of house and home and the very few things we do allow him to consume, there is never enough of. I am not impressed with having to be in Seattle so early tomorrow since it will be in a very high traffic time, but I am glad that it is early because Samuel won't be starving and livid before we even arrive. Who am I kidding, I hate getting up early, especially when sick. I hate sending him off with people and being left to wonder if the other shoe will drop when they come back with post op news. It is usually never good, or what is expected but I am trying not to let my mind wander too much today. I am mostly trying to take care of myself at this point so no thought gets too much time in my head.

Samuel either needs a punching bag or needs to play tee ball. His newest thing is to find a bat like object and hit things with it. He will go outside, throw a rock up in the air and try til hit it with a stick. In the house he is beating his Dora balloon with a toy. He seems to have a fascination with hitting things and making them move. Either that or it is just pent up anger. I know the feeling, I think I could benefit from the punching bag too. But, he has always been enthralled by balls and it would be really cool to get him into something like that...you know as soon as he is potty trained. Oh and that doesn't seem to be any time soon. We are hoping that we can get the problem at hand resolved and really start working on getting him to the toilet as much as possible. Unfortunately the majority of times we have got him to the toilet, it has been when things are wrong and it is always really painful. He thinks is hurts too much on the toilet, but pooping in his pants is fine. The older kids trained with some goal in mind....going to Bible School, Preschool or Swimming Lessons. Well, none of these work on him. He wants to go to swimming lessons but doesn't want to go in the toilet. For the most part, he has control, or at least notice, because he will go hide and poop. One day he went and stood in the bathroom door and pooped. Talk about being right there! The surgeon asked if he was gaining control yet and he definitely has some when things are normal.

Please pray that tomorrow goes smoothly and that we get answers or better yet, that they fix this without cutting and Samuel can eat again. I just want him to feel good again, and have his butt heal up so he can go on with life. Honestly, if I hear "I'm hungry" again, I think I might scream......."YOU JUST ATE!!!!!!! I JUST FED YOU!!!!!!!!!!!" Yes, I am ready to get back to normal, whatever that is. Much love.

4/23/06

I sure hope "I" feel better soon. It was about all I could do to function yesterday and today is marginally better. We just had this crappy cold, and everyone improved, then got it again. Since having my wisdom teeth and tonsils out in my late twenties, I don't get sick very much anymore, and when I do, it is not as bad, or for as long...........BUT, ugh, this sucks! Both times everyone has gotten sick, I have been able to ward it off right up until AF appears, then bam, I am sick. AF leaves, and I am better. Talk about adding insult to injury. My head has felt like it might explode at times and my body would feel just wonderful if I could cut my head off.

Anna and Samuel both got pink eye, probably from rubbing their eyes after rubbing their noses. Yuck! Thankfully, we still have the eye drops that kill that off in one dose so that is gone. Anna has been even more miserable than me and it has lasted over a week for her. She was running a fever at our last hospital visit and just miserable. She seems better today, finally. Daniel has been so miserable too, and since it seems like we have been sick for a month now, he sat down one night and just started crying and said he was afraid he would be sick forever. I feel like some of this has to do with Samuel, and the duration of time he has been sick so I told Mark we need to sit Daniel down and explain to him that the kind of sick Samuel got is not the normal kind of sick that the majority of us get. Further, Samuel's "sick" was chemo induced, which will never happen to Daniel. Kaysha is doing fine and Mark is also finally better.

Samuel is still in limbo. We are as usual, waiting for him to poop. It has almost been 24 hours since he went again and he is still doing the puke cough but nothing comes up. His body is really trying hard to get rid of it, if not down, then up. He has been grumpy about this for so long that I look forward to the day where he can be happy again. His grumpiness just grates on your nerves. I understand why, but he doesn't. He really wants to eat, but we cannot allow him to compound the problem further. We have told him no about eating foods for so long that it will be strange to allow him to eat someday again. Sure be nice if that someday would be this week. We are just biding our time until Wednesday hoping that they will find a simple solution that does not require further cutting and more loss.

Mark took Samuel out on his birthday for the customary trip that all the kids get to pick out their birthday gifts. He had a lot of fun and I missed going to watch, but Anna was sick and miserable. He picked out a new trike, a ball, a gun and some bubbles. He was most excited about his cake. He got nice gifts from the grandparents and cousins and we were not bombarded with junk which was nice. Sometimes people tend to go overboard. Samuel is not one for gifts so much as he is one for doing stuff. We hoped to take him to a nearby zoo for his birthday but between hospitals and being sick, it hasn't happened. Maybe in the next two weeks we can do that. He will love it as will we all. I am tired of being cooped up here myself.

Next week is a busy one with the hospital proceedure on Wednesday. Kaysha has her SAT's on Thursday and Friday and I think this is Kaysha and Daniel's last week of swimming lessons so they will do testing there too. Mark is planning a fishing trip over the weekend so I hope that all goes well Wednesday so we will all feel relaxed about him leaving us for a few days. What I mean is, it would be nice if Samuel's gut is working again by the time Mark leaves, instead of needing more tests, or more surgery on the horizon. I hope we can get some closure to this so that we can go on with life instead of living in the Groundhog Day pattern all the time. Things just seem all to familliar.

Our raffle for Baby Donovan is over. We were able to raise $1100.00 for this family. Thank you to all who participated. Please remember that while this raffle is now over, this family's struggles are far from it. Like us, they just want their son to be healed and allowed to have a life without endless suffering. Please remember them in your prayers. If you missed out on the raffle and would like to help this family, they are doing a fundraiser on their website. Anyone who has followed our story knows, it is never over. Such a cruel reality sometimes.

I did not get to fully enjoy Samuel's birthday being ill, but I did do some reflecting on his birth and all the emotions that came out of it. What most got me was how simply perfect he was. His body was whole, intact and he was so precious. God really gave me a gift that day because I knew from the moment he came out, that he was something special to be cherished daily in a way I have not cherished the others as babies. There was just something about him that made me never want to put him down, spoil him, and truly enjoy every day of his life. He rarely cried, ever. It was something you noticed because all the other babies cried about certain things. He was always happy. How I wish I could go back to just one of those newborn days and look at him again. Hold him, hug him and cherish those moments once more, with the knowledge I have now. Pretty early in life he was nicknamed Mr. Pooper. Well, that was all he did. Guess you need to be careful what you nickname someone, it might come back to haunt you. I would take Mr. Pooper today over Mr. I cannot poop anymore.

4/21/06

Happy Birthday to my most beautiful QT. HIs party was tonight but will rank in the "to be continued" because we are all feeling ill to some degree or another. Anna and I are really feeling awful. Samuel's tummy is bothering him and he is constantly doing the "puke" cough. But he managed to enjoy his party nonetheless.

4/20/06

In all the ten years now we have been married and the almost twelve we have known each other, never did I ever imagine I would spend my tenth anniversary explaining to a surgeon that we have walked away from chemo and chosen quality of life. Never did I think I would be asking a surgeon to improve my child's quality of life. This all started two years ago tonight. I told our surgeon that two years ago, Samuel's body was perfect. 40 days later, it was missing a colon, 10 days after that he was comatose for months. What kind of life does he have in store for him anyway?

This day has been pretty rotten to put it mildly. I felt fine this morning but the second I got into the car, I got sick. Physically ill. With the same crap the rest of the family has in some stage or another. But I was immediately sorry we don't have an emergency medical kit in the car. With simple things like ibuprofen or herbals.

Samuel's X-ray did not look any different, no big surprise. However, I did find out I had misinterpreted the last one. The top area I thought was full of poop, is actually air. The bottom area I thought was clear is where the impaction is. All the way down to the rectum....then empty. The surgeon says it should show air all the way through and this leads him to suspect a narrowing at the rectum or even a partial collapse again. Of course we cannot do anything about this until next Wednesday when we are on the surgery schedule to have it explored and an enema treatment to try to clear everything out. I just keep remembering when the stoma closed down. They dilated it open and tons of poop came out and filled bag after bag for hours. It was all water, but still could not pass. I wonder if resolving this will be as simple as opening up his rectum and it will just flood everything. Now I know why he is coughing but not puking. It is down low, not up high. Basically what is coming through is bypassing what is compressed. His body is just continuing to dehydrate it and make things worse. If there is a narrowing, then nothing we have done to try to soften things up will be of any use. So that explains a lot thus far. Of course nothing is for sure until they go in and look, but I know that there is something wrong, and have known it for two months now. I let them know in no uncertain terms that we expected them to make this right immediately. Immediately being another SIX days away...ugh! So we bide our time until next Wednesday and hope to get some answers about the how's and why's and what to do next. The rectum should not collapse with regular use, or so they told us. So I don't know what the prognosis is if that is the case.

I told myself I would not make a big emotional thing out of this day but I failed. I just feel rotten and cheated. It is amazing how you think it will never happen to you...until it does. I spent a lot of time thinking of what life will be like on our 20 year anniversary. Samuel will be turning 14 then. What will life be like for him? How many more surgeries will he need to get there? I think I am very sensitive to his quality of life more than most other people would be because I was born with a handicap. My brother was born before me, and my parents found out very early that he was legally blind. They would talk to him and he would look blankly around the room for them, never seeing them. They found out that his condition was a million to one odds, yet at the same time were told that any future blonde haired blue eyed children they would have will also get this genetic defect. They chose to have another child knowing this. I was born. Same defect, only even worse vision than my brother. Then they had yet another baby. My grandma's best friend told me that Delma was livid about that pregnancy. I am quite sure that a lot of it was the thought of bringing another child into the world with the same problem. This third time they were lucky. My sister is a brunette, and sees very well. My parents were of course shocked and saddened and vowed to do whatever they could to improve our lives, but the fact is, that they could not and can not live our (my) life. They have no clue what I have went through, during school, learning to cope with the things I will never be able to do, figuring out how to do the things I want to do that people think I cannot. They are not legally blind. They have never been legally blind. Similarly, I have never been well sighted. So I guess it is good, because I don't know what I have lost. We went to schools for the blind, camps for the blind, and had lots of unwanted attention growing up. We eventually integrated into regular schools, but our defect was completely obvious to everyone. My parents could not go to school with me to ward off looky lous who thought it was hilarious that we needed our books two inches away from our faces. They could not be there when we were picked last for PE teams because everyone knew we would never catch a ball. They will never know what it was like to get a bike for your 16th birthday and miss drivers ed. They don't know what it is like to go to college thinking you can go for the career of your dreams only to find out that you needed to see well to do it and no amount of ears compensating for eyes will work. They don't know what it is like to take your kids out to eat and not be able to read a menu or to take them to the park and not see them when they are ten feet away from you. They don't know what it is like to go to their dance recitals, Christmas programs and never see them perform. They have no clue what it is like to have people stare and wonder why your eyes never stop moving. They don't know what it is like to never be treated like a normal person. I could go on and on but I think you might get the point. They can do a lot of things, but ultimately, I have to live with this, not them. They chose to bring me into the world fully knowing what could happen and they did it anyway. And here I am. Seems a bit selfish to me. Now, I am not saying I wish I had never been born. I am saying that my parents knowingly brought a child into the world with a major life altering problem so they obviously did not give much thought to what our lives might be like beyond the confines of their home. Living this life makes me very sensitive to Samuel and how his life will play out. While he might not remember what life was like with a body that was whole, he will see how others live and one day understand how his life differs. I do everything I know to improve things and yet they don't improve. I have no clue how he feels, and I cannot change anything that has happened. I feel badly when I think of what his future will be like, the things he might miss out on, and want to do. Things he may never be able to do if he doesn't get his pooping under control. Kids making fun of him if he has an accident when he is 8 years old. Kids saying he is stinky. Kids thinking he is an alien because of his shunt and scarring on his head. You know, things that sound silly to adults but things that hurt feelings when you are kids. I know how these little things feel when you are a child just trying to fit in. I finally figured out I would never fit in, so stopped trying. I got a horse and gave up on having friends, at least a lot of them. I won't be a party to adding to that sorrow, but I also know I can only do so much. His life will be what he makes of it. Will he thank us for taking him to the ER two years ago tonight? Or will he wish we had allowed him to die in peace that night? Will he thank us for the chemo which destroyed his body? Or will he thank us for doing everything to save him? Will he be glad we brought him into this world four years ago tomorrow only to have his body cut away piece by piece with a knife when parts stop working? Will he know that we did everything we could to fix this? Or will he think we were selfish? Will he even care? Only time will tell. I pray that this child whom I feel like is the spitting image of me in so many ways will continue to prove me right and prove all the world's naysayers wrong.

Today Samuel is a two year chemotherapy survivor. Note I did not say cancer survivor. The chemo was much worse than the cancer.

Tomorrow is this little sweetheart's birthday. His birth and existence has forever changed my life for the better and I would not trade one day of it for anything. I pray that as he ages he will always know how much he is loved and how hard we have fought to save his life and improve it. HIs party will be here tomorrow night and he is very excited. As with everything else, he really has no clue what is in store for him in the next day, or even week. I really need to sit down alone and adjust my attitude before all this so my sadness does not ruin his special day.

Time to relax with Mark, my love, my best friend, my soulmate. He is the rock in a hard place. We made it, ten years! Ten years and ALL OF THIS. Let the naysayers stand down. We are bonded, united and we stand strong in our faith and love for each other.

04/18/06

How I wish I had something positive to say. How I wish that these updates did not all sound the same. How I wish Samuel could just eat and poop like a normal person. How I wish....yes I could go on and on.

Things are not better. Things always worsen at night, when I really want to sleep. That is the time his gut decides to reek havoc on him. I have been trying to think of words to describe what comes out his butt when things are so obviously wrong. All I have been able to come up with to date is rancid, and wrong. But today I think I have finally figured it out. It is like vomit, out of the butt. Vile, I know, but that is it. It doesn't resemble poop, smell like poop, or look like it. But if you saw a puddle of it on the floor, you would swear it was puke. That is what I have been getting mainly for the last two months and can I tell you, I am so tired of it!

Samuel is grumpy, and when his gut is off, he is too. He doesn't sleep well, rarely takes naps, and is still starving and thinks we are so mean to him. Last night he was up until 3am and quite frankly, I am exhausted. I would be excited for Thursday if I thought they might actually DO something then, but because it is always hurry up and wait, I look forward to another day of aggravation, and more appointments, and more and more days like this. For them, they have only seen us once, and for us, we have been doing this for over two months now. For them, it is not a big deal, fur us, I am nearing the end of my rope. Last night Mark and I talked about what they CAN do. We have tried everything short of coming in, going on TPN and doing complete bowel rest. I don't know if that is an option either. The other thing that lingers in our minds is the possibility of more surgery especially since this has gone on for so long and things are definitely not getting better. It is a very depressing thought to wonder if this is all Samuel has to look forward to in life, continuous gut issues and surgical problems. Every surgery makes healing of the gut, the scar tissue and chance of blockages worse than the last and we are three in already not counting the five abdominal taps for CSF and the three for shunt placement/extraction. UGH! That is just such a awful visual. I just don't know what other options we have. I am still amazed that a GI doc would send us home with three months of laxatives for this and no follow up. I am just really really disgusted tonight. Being tired doesn't help of course. Each day Samuel asks me to fix his tummy and I cannot. Life is so cruel somedays. I pray for an answer at this point, and relief for us all. I was hoping this would be a fun week, ha...HA! Bucket of laughs...more like crap.

But thank you for your love! Please remember the raffle for Baby Donovan. We have sent them $700.00 to date which is awesome! Keep spreading the word, this is just a drop in the bucket for a family not looking at coming home until late fall. With everything that remains so wrong here, it is so wonderful to help someone else especially when I know first hand how much it does help. I think just about anyone can afford $5.00. If 500 people donated $5, do the math! Thank you all for your love and support. Thank you for your prayers most. Much love!

Guess I did find something positive to say after all.

04/17/06

Well, Easter did not go as I had hoped. Everyone here has been sick with this lingering cold to some degree. The night before, Daniel was up, therefore, I was too. Between him and Samuel pooping all night, I got pretty much no sleep. Anna was so miserable on Sunday that I ended up staying home with her so she could nap. Mark, Kaysha, Daniel and Samuel went to the Easter party at Mark's parents. As you see, Mark got a couple good pics, but I heard that Samuel had a lot of fun with other kids there, especially some older girls who he charmed. They were gone a lot longer than I thought they would be because usually he gets to missing me and wants to come home. Guess he is growing up! The weather was nice, but I sure missed seeing him having fun.

The poop situation remains the same. Awful. Either there is none or it is just water, acid water. His butt is a mess, very raw and sore. At this point, we are just counting the days until Thursday. Why, I don't know because it is not like they will DO anything on that day but speculate, but at least we will get a look at what is going on and then obviously go on to schedule the EUA. I really hate these procedures but at least they are smart enough to know to do it under anesthesia. It just makes for a long dramatic day of waiting.............and the news is rarely good. This has gone on far too long so I hope they will be smart enough to listen to what I am telling them and HEAR it this time. I won't be quite so nice this time around if they do not. They need to fix him, that much we know. Despite these issues, he continues to enjoy life as best he can.

Thank you to Beth, Kerri, and Misty for the birthday gifts which arrived today. He is really excited for his special day.