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
