10/21/06
The server for my site has had "technical difficulties" therefore, I have not been able to update with the many things that have happened after the last update.
First, Kaysha had a great party! Thanks to Mark's Mom for doing this and to all the kids who attended. By the time we arrived, they had lost their costumes so no costume pics unfortunately. I am sure to get more opportunity in about ten days. In many ways, it seems Kaysha has just grown up on me and I guess that is good because she is independent enough to not need her parents to have a good time. She is spending the day busily playing with everything, LOL.
So, rewinding a bit, I spoke with our Onc Thursday. I guess he was left out of the teleconference with the PCP. That I did not know, I just assumed he was there so I found that quite interesting. The PCP did call him last week. I reiterated my meet and greet with her to the Onc and he was about as flabbergasted as I. He mentioned that he knew a few PCP's and would talk to them a bit about us and see if he comes up with anything. I told him it has taken us ten months with him to get to the point where we can have this type of honest conversation about doctors and Samuel's needs and I have come to the conclusion that we will not find anyone before the surgery date that I can trust enough to take care of Samuel and not Medicaid. He will continue to act as PCP until we find someone at this point. I know that he would advocate for us rather than Medicaid.
I also called the ND and got a referral from him to a PCP. We also had a phone conference about everything going on as of late. I haven't spoken with him since probably January or so. He, unlike the rest of these people, did have some ideas for us to try and a philosophy which indeed made sense. In his experience, after a person has lost their entire colon, the gut does funny things in compensating. One of which can be OVER compensating leading to constipation. We talked about how Samuel's gut just seems "tired" and sensitive to everything suddenly. How he cannot eat most foods, etc. But he is confident that with a few minor adjustments for the next week, we can restore his motility and improve the quality and quantity of his poop. Well, we are on day three and things are going WELL!!!!!!!!! Yes, actually well. He called me last night and told me he had been thinking about Samuel for the past two days and could not wait to hear how it was going. He was very relieved to hear things had significantly improved. He told me he feels like my rescue 911 because I don't call him much. So I reminded him that it is not like we have a money tree in the backyard. A lot of the calls he does not even charge me for, but as I told him, I do not want to "take advantage." He said we are like family and not to worry about it.
So, the PCP called me on Wednesday, left a message to call her about my concerns about our meeting. Obviously Medicaid called her. I haven't called her, and may not since I know anything that is said will just be reiterated to Medicaid. And I don't think I am talking to him either. He hasn't called with the list of PCP's he promised me either. MD's just don't take to being fired well at all. I guess they just don't realize that there is a doctor on every corner and we don't have to settle on one we don't like.
I was really concerned about my GI visit yesterday in light of the recent MD issues earlier this week. She was not in on the call because apparently she was unavailable. Thank God for that. Well, first off, I left her office convinced that she will take care of our needs and then some. Mark was so relieved when I got back into the Backus Bus and told him how happy I was to FINALLY find someone who cares about Samuel. It was like a weight lifted off my shoulders.
So, backtracking a bit, the Onc told me that the UGI study came back "NORMAL" but it was noted that his lower ileum was dilated and appeared as colon. That explained why the tech was confused by what she saw. She thought she was looking at colon. The Gi had previously told me that this tissue will in fact grow and appear as colon and that was the normal progression of adaptation. However, when she looked at the UGI films, she told me that this study was NOT normal. And while this is not particularly good news, I take it as such because we have been saying all along that his gut is NOT normal and now we have someone who sees it and agrees with us, disagrees with the Radiologists.
And more interesting, I sent her the previous films from Tacoma which she would not have access to since she is affiliated with Seattle. Yesterday she asked me if that was during good times, or bad. I said bad. She said that dilated loops were obvious through the ENTIRE GI tract and that these films were phenomenal in respect to the troubles they show. So again, clearly it depends on who is looking at these because I got completely different opinions from Tacoma MD's and Dr. Levitt. Dr. Levitt looked at the UGI today and said it WAS normal. Well, I still say it is not because I have to troubleshoot it daily. I am sorry, but puking weekly is NOT normal. Needing IV fluids to keep things moving out is NOT normal. Needing enemas is NOT normal. Anyone disagree? The ND's thoughts about the enlarged colon looking ileum is that it is due to the constipation issues and will reduce once motility is reestablished. I did tell him very honestly that I am skeptical. Only because things seem to work for awhile and then stop. It would be wonderful to believe that this will solve things, but at this point, I am not holding my breath. Every day that Samuel is not screaming and pooping, I am thankful for. So that makes three.
The PCP on Tuesday brought up that Samuel has psychological issues with pooping due to pain and is holding it, making the problem worse. This makes sense given the last week or two, but suddenly he is pooping fine, not afraid and I am not having to remind him to poop, he is just doing it and calling me after the fact. It is almost like his mind somehow knows when things will be okay, and when it won't. So, I think the only one with the psychological issue is her.
I relayed to the GI the treatment plan from the ND. She impressed me by acknowledging that Samuel seems to be the exception to EVERY rule and wants to be cautious about trying tons of new things because we won't know what will work. This is still being called a pseudo obstruction. However, she did asked me when his last barium enema study was done so I know she is concerned with the size of his lower ileum. Quite frankly, I am still waiting for someone to call and tell me that his colon is growing back because that is what we have all prayed for for over two years now. Wouldn't it be amazing if they are indeed looking a newly formed colon? Jesus, do your miracles! We will take them.
So moving on, the GI asked me if we have a PCP managing all of these things going on. I knew instantly that she must have talked to the PCP I just fired. I told her that while there is one listed on our record and it is in fact this particular PCP, that I am not going to use her so I don't have one. She then asked me why I wasn't happy with this one and what I was looking for. So I told her about my visit with the PCP and how I feel she was groomed by Medicaid to do only one thing. I was not shy about telling her very specific things that were said because after all this, if I cannot be myself with a physician and have them respect my latent honesty, then they are not right for me. The bottom line was that she did not listen to a word I said, or to our concerns which are that Samuel cannot eat and poop normally. The surgery is still over a month away, who cares about it if we can just give him some relief. I cannot do anything about the wait, I told her I wanted a doctor taking care of us who realizes that we have managed all of this for months while people dilly dally around. We have not had one doctor with us throughout this whole thing, from start to finish, so therefore I am the only one who knows the entire history. Certain things like diet are non-negotiable. I told her that the PCP thought Samuel was in nutritional crisis and asked her if she had that same impression after seeing the labs. Obviously, she did not. But she also saw his scans and knows, like I, what a miracle it is that he is nutritionally doing so well in spite of the gut problems. So, after quite an interesting conversation about that, she told me that she has two kids, and she sees so and so who is very bright and would LOVE to work with this MD and us together. I would say that this is the best referral we have received to date. She asked me what I was looking for in a PCP and I told her someone like her would be a very good start. So she gave me this PCP's name and I asked her to call in an intro for us. I also told her that this thing with Medicaid is so blown out of proportion and to warn the PCP about that as well. She did admit that the PCP DID in fact call her that morning prior to our meeting so I am sure she was prying info out. I got the impression that the GI does not want to work with her either.
My Oncologist's idea of what a PCP needs to do for us is what he is doing now. Allowing us to care for our child, trusting OUR instincts, and knowing that we will call when we need help. Ultimately, that is what I want but I also realize that it has taken me ten months to get to this point with the Onc and it won't happen overnight with someone else. I want Samuel healed and a PCP who does not even recognize our name. That would be nice. Normalcy. Time to heal. More than a few days of GI relief for Samuel. That is what I want. I want to work with people I like, who like me, who treat me with the respect I deserve for taking care of Samuel when everyone else was too busy to do so. I want someone who will give me a reason to trust them, not several to run out the door screaming. So, as it stands now, I have an Onc whom I like. Seems amusing to put Onc and LIKE in the same sentence. But I did. I have a ND I have always liked, but cannot afford to regularly use...but he knows that now so hopefully there will be some more help there. He says I can send him $5 a month for ever and he doesn't care. I have a GI that it seems like we have really hit it off with so I am thrilled about that. Is it possible that we could find a PCP too? That would be nice. If that happens, I will simply call Oregon and let them know who it is and Medicaid can play detective and figure it out. After this week, I really think I am done with him. I cannot believe it is so ridiculously hard to find people who want to help a little boy who has suffered and continues to suffer so much. I thought that Medicaid was helping, but now I do not believe he is. He doesn't know me, the medical history, what our daily lives are like or obviously have any compassion for our situation. This is not a game, this is Samuel's life, his quality of life, this is our lives. God help us find people who understand what WE, his parents are trying to do.
So, I am off to enjoy the weekend and savor every moment Samuel is not screaming. Much love.
10/17/06
We went to the wedding, we walked down the aisle and when we got to the I do part, we said NO FREAKING WAY!!!!!!!!!!!!
Confused? Let me explain.
We went to see our former PCP today and it became rather obvious very quickly that she is not going to work out. Apparently, she and Medicaid, the surgeon from Seattle, and also Portland and last but not least our current Onc had their phone meeting yesterday. The agenda of Medicaid has become quite clear to me today. Basically, the doctor we saw today had formulated her own opinions about us and how our case has been managed before we walked into the door meaning I got the impression that some doctor talk behind my back has transpired. And it is very clear that Medicaid's role in this was to make very clear to this doctor that Samuel is to be at his December 4th surgery date period, whatever it takes. I think he knows he is on shaky ground should we miss that date based on his later comments to me. So we spent most of the first hour talking about how Samuel's nutrition status is compromised mainly because she doesn't understand his diet and his current condition. She wants to be sure he has good nutrition going into his surgery. If there is one thing we know how to do, it is to give him the best nutrition prior to surgery....that is all we have done it seems. And as Mark points out, this is really just a sore spot to take up with me period. Samuel's labs clearly point out that despite his erratic GI tract, his nutrition and basic nutrients are either normal or above average. I guess she was unable to read the labs I presented. She was aghast that Mark would take care of Samuel's port, that we would do daily enemas and also now dilate his anus. She also had been sent all my personal e-mails to Medicaid so "knew our side of the story." Working that did not make me happy. This is the person who is supposed to be OUR advocate, not Medicaid's and that is what this is really looking like has happened. She forgot she works for us, not them. She is off trying to figure out how I can get cream onto his butt and Nutramigen into his g-tube because I obviously don't know how to take care of my own child. I saw NO compassion and certainly not someone who plans to be our advocate. It might have been different had we seen her BEFORE all these other people had their say in the matter, but maybe not. I had to educate her on several things we have either done or medical terminology she wasn't familiar with and felt like things were heading south at several points in the conversation. And she did not allow enough time for this appointment because she obviously already knew everything so she scooted us out as well. I was ready to go anyway once I realized that I was wasting my breath trying to advocate my child's needs, which are to find out what is wrong with his gut right now. Not worry about a surgery that may or may not happen if they don't figure this out first. Very very disgusting! Funny, I would have thought the meeting with the GI would have been like this and the meeting with her would have been fine.
I say we went all the way down the aisle because I called Medicaid when I got home to find out how much time he has invested in her and to let him know we won't be using her. That is when I found out about the meeting mentioned above and that in his mind, this was a done deal. She was the doctor for us, end of story. Oh, saying he was not happy is putting it mildly. Of course he wanted to know why so I told him and he is going to call her. I am sure that will be one very fun call for both of them. I let him know he was premature in getting all of these people involved before we had a chance to interview her again. I told him I was going to be calling some other doctors for referrals since this one worked out so badly and also let him know that I want to meet them cold, meaning with my little three page synopsis of Samuel's medical history. If that person is still interested in helping US after that, then he can call the big guns in. But they are NOT to invest their mouths until I say. He said, "Oh, so you can invest YOUR mouth..." And I reminded him that these doctors work for ME, not him and if this person is going to be an advocate for MY child, they damn well better listen to our concerns and not treat me like I am some pain in the ass parent. We have been through a hell of a lot more in 2.5 years than most of these doctors and deserve some respect. He assured me that the meeting with all parties on the phone did not go like that and even commented that he told everyone if he had a child in Samuel's situation, he would want me as the advocate. However, he also mentioned that I overstep my boundaries by trying to BE the doctor and I told him that if and when he finds me a competent doctor, I will be happy to step away from that platform. (My mom got a good laugh about this when I told her about this particular comment.) He was speechless. Until then, he better realize that WE have kept Samuel going and it is a result of THEIR medicine that he is in this condition today. Do you get the impression that this was a bit of a yelling match? Well, it was. He asked me to give this doctor one more chance and I told him it was a waste of everyone's time bringing her in without us seeing her first. He thought that she could not possibly be up to speed on our case with one visit. I agree, however, I also told him that it was possible to find doctors who understood exactly what we are dealing with and I just had had a good meet and greet with the GI. It was possible to find people I wanted to go back to see, establish a rapport with. Just not this one. My time is valuable and I am tired of wasting it on incompetence or people trying to be important. I don't know what her problem was, but I am done with her at this point. He is supposedly now getting me a list of other MD's to interview and will only send records initially until we make a decision. Oh, I am just so annoyed about this. I am sure he is quite unimpressed tonight too, and well, he should have learned a valuable lesson. Other thing to note, when I told him Samuel was over this doctors head, he told me he thinks Samuel is going to be over MOST EVERY doctor's head. Gee, wish I had that in writing. I guess he finally got around to reading the records.
Another thing that was mentioned by this doctor today was that once we get Samuel's GI all fixed up, then we would go back to chemo. So of course she got straightened out real quick on that. Above all else, I want a PCP who has enough compassion to realize that stopping chemo was a lifesaving choice for Samuel and a decision we have already made, not to be questioned again. I asked Medicaid about this when he brought up all Samuel's problems and mentioned relapse. I asked him if he was insane enough to think we would go to all this effort to fix things just to start chemo and ruin it again. Well, kudos to him for realizing this was NOT the case because he knows without a doubt we are done. He told me he thought she needed to hear it from me. If reading the medical history does not make that a clear obvious choice, then I think you would just have to have a screw loose upstairs, or just be an utterly selfish person undeserving of children. These fools just need to live my life for one day. Or better yet, live in Samuel's body.
So, I put a call into my Onc before I knew about the teleconference. I just assumed that this doctor called him initially. Now I know he knows what was said so I will hopefully find out more about that tomorrow. I believe he is the kind of person who would have been an advocate for Samuel on a call such as this so I hope he will also be honest with me about what was said and what I think is really happening behind my back. We shall see.
I also plan to talk to my ND and see if he can refer me to an MD with some ND experience, or at least who works with him and doesn't think a certain diet is wrong because it doesn't come in a can. Or maybe just someone who can think outside the box. I might also ask the GI for a referral to an MD with extensive GI experience when we see her on Friday....assuming I still like her after that visit. And God, I hope I still do. She wasn't in on the meeting at least, LOL. Lucky her.
More to say.........but it will have to wait. My bed calls. I will try to wake up on the right side of it.
10/16/06
Well, well, well, the official Radiology Report is back and it says that everything from the UGI looks normal. So it was just as unhelpful as they have historically been. The Gi office called me today to ask about the one at Children's on the 25th which I hadn't canceled yet and after I told them about how things went on Friday, she looked at the doctor's notes in the chart and found that she wanted them to look for some very specific things that they did not because obviously, they did not speak to the Radiologist prior to us going in. Talk about continually frustrating. And so we might just be keeping the Children's appt after all on the 25th so we can get this done right.
I am feeling especially sarcastic about this report considering that Samuel came downstairs last night with poop from head to toe, and a line from the puddle in his bed to mine. The poop literally was brown water and went everywhere. A telltale sign of amiss. We did Slimy first thing this morning and only got the enema fluid back. I am beginning to think he is not pooping on purpose and what we see coming out is what he cannot control. Either that or he poops in his sleep. In the daytime he refuses to go. He has become scared to death to go. So we are literally at a stalemate. The tests say all is well and he is anything but.
We go to see our PCP tomorrow. Haven't seen her since she called me with his cancer diagnosis. I am sure it will be an hour spent telling the entire saga over again and then ending on what is going on currently. Then Friday we go back to see the GI.
Friday is Kaysha's 10th birthday. She asked why Samuel had a doctor's appointment on her birthday, like that day would be excempt. As if there is ever a break from this. As if one could plan a day to be good. Things that irritate me currently are the massive amounts of things to do to simply get through a day. Mark's parents are having a birthday party for her at their home on Friday with all her friends from church activities, etc. With exception to one of the girls, I don't know any of her friends. I don't have time for her to have a party with friends here, just small quick family parties. We will be spending most of her birthday elsewhere. She is having a costume party which she is excited about. She is wearing one of my old dresses from the stage performances days, a nice black cut out shouldered one. I bought her a padded bra so she can have boobs which is all she lacks to have this dress fit correctly. She is becoming a redhead as well. Oh, she is quite pleased with this getup. Yet, we will probably miss most of the party.
Daniel just asked me for pizza forgetting that Samuel cannot eat this. And he would LOVE to, believe me. He would eat until he puked. But they just forget and they bring things up right in front of him sometimes and leave him crying because he wants to eat. Kaysha and Daniel were fighting over the last doughnut the other night. Doughnuts bought after they dropped us off for the UGI. Then hidden when we got home. Well they wanted me to pick which of them should eat it and while they were indecisive, Samuel saw it left out and stole it. That was two days ago and I think we are still waiting on it to come out. I felt sick when I found out he ate it. First because he is obviously deprived and secondly because I seriously considered making him puke on purpose just to get it back out before it got stuck. And here we are today, with something he says is stuck, therefore he is not pooping any more.
I feel worst on Samuel's bad days because the other kids don't see much of me. I mean, I am here, they are here, yet all I do is take care of Samuel. They are not even bothered by his screaming anymore because I guess it is just normal now. It bothers me that even for us, it has become a normal thing. I am usually glad to see them leave to go somewhere fun as I don't feel guilty when they are gone. There is no equal time for anyone. I ran into an 11 year old girl at the Oncology Clinic last Friday. Older than Kaysha, yet seemed mentally more like Daniel who is eight. Either Kaysha is really mature for her age, or this other girl was not. Possibly a mix of both. The other girl was about two years into her leukemia treatment and was actually happy to find out she shared the same kind of cancer that Samuel had had. That made me feel sad for her because cancer is nothing to be excited about. She was such a precious sweetheart, I was glad to know she was about done with the chemo.
If Samuel's GI tract has some type of nerve damage, I don't know how they will find it. They normally do an MRI to the brain to find it there, so I don't know if that would be an option on the gut since nothing is really declaring itself. If that be the case, then it would seem an ileostomy is the only real solution for us. The anoplasty to be done by Dr. Levitt would allow the anus to be the proper size, but not make any difference to the damage should there be any. Thus, it won't solve the problem, just allow the problem to escape easier assuming Samuel decides pooping is an okay thing to do. If we chose ileostomy, it would then be permanent. I would never put him through another take down again after this hell on earth. So the decision would not be an easy one especially having to go to bed for the rest of my life knowing that he lived like he has the last year and it was all in vain. I will never forget asking the surgeon if taking it down would be okay, if Samuel's body would be able to adjust, if the damage to his rectum and anus would withstand and he said he was confident it would. I was ready to cancel the whole thing, five minutes before Samuel went back if there was even a doubt in his mind. And of course, a decision like this is one I don't want to make without consulting an expert such as Dr. Levitt and possibly an expert Gi now because this would be a major life altering choice. Having a stoma was no picnic either and it just sickens me to have this thought come and go. He has come so far in the last year. He is potty trained and when things are good, he even poops in the toilet. I just cannot imagine taking that away, yet I cannot imagine him going on years like this either. I don't see any relief, and I don't see an end to this nightmare. That is what is getting me down.
I just want him to be able to eat and poop like a normal person. It all would seem so simple. When Kristina's children pray, they thank God that they can eat food, unlike Samuel. I might have to remind my OWN kids of this very thing since we all seem to forget what normal is.
10/14/06
Let me preface this by saying that I AM thankful we were able to get the upper GI done so quickly in Tacoma.
But, no one told me anything. So either nothing stuck out or no one has really looked it over. The Radiologist was too busy to even do it so we had a tech who was unfamiliar with Samuel's anatomy. She told me she was wondering where his appendix was and I told her it was wherever they put them when they are removed. Then I told her he did not have a cecum or any large colon up to the sigmoid. They were trying to figure out at the end if it was done and they had reached the last of the small bowel and I told them they had indeed reached the end. It took several hours to complete in which time there was no where for us to wait but a hallway in the Emergency Department. I assumed we would be in a place with things to do so Samuel had nothing to do at all. Mark and the kids dropped us off and went home so we ended up going up to the kids floor and playing in the playroom which Samuel never got to play in while being inpatient there. And really, it is just a sickening place to be with all the memories creeping in, little sleep and disgust for the way things are still handled there. I had forgotten how transporters there just drop you off at the door and you sit and wait for people to take you back to your room. Not so bad if you look decent and can walk, but if you are half dead in a bed sick and stuck in a hall in the middle of the ER, how would you feel? One man sat in his bed like this for about 15 minutes. I had to take Samuel and leave because I was so irritated. At Children's, your transporter never leaves you and you do not sit in hallways. The Tacoma hospital is both children and adults so you never know who you will see.
I missed a perfect photo opportunity as all the films were on a screen directly in my clear view and I could have snapped away and studied them all weekend, for all the good it would do me. I say something that did look like a narrowing in the first part of the scan and every film looked the same in this section. But of course, no one mentioned anything and when it was done, the tech told me our MD would have the report in a few days. Yeah, I was not happy about that. Samuel did not even start pooping out the contrast until well after we arrived home. Usually he is pooping it out before they are done so this tells me what I have thought all along. Things are REALLY slow. The initial x-ray also told me he needed a visit from Slimy again so we did that upon arriving home after he had napped and got all the contrast out before he went to bed for the night. He will need fluids for the next two days to make up for going almost until 2pm from 9pm the night before with nothing to eat or drink. Rotten day! I just pray it was not in vain because it sure feels like it was today.
Other than all that, things remain the same with Samuel. Slow going, literally. He has decided he just isn't pooping anymore so you can imagine what that is like for everyone. I think I am finally, now after 2.5 years of this, depressed. There, I said it. I know I have had other times of depression throughout this, but they have only been days, not weeks turning into what feels like months now I feel so overwhelmed by everything there is to do, and it all seems in vain because nothing changes. Our situation remains the same despite what we do to try to fix things. The fact that we don't even know what exactly we are dealing with is what is really getting me down. Plus, I look around me at everything that needs to be done just to keep things going and I want to just go back to bed. I want to leave the house and never come back because when we are gone, reality seems altered for that little while. We are really at the point where something needs to change for the better because I don't know how we will continue on like this without me going insane. Knowing something is wrong and no one finding it is making it impossible for me to function as I normally do. Mainly because of this groundhog day syndrome. I am tired of writing the same updates. This is no life. All we are doing now is trying to find ways to escape reality whenever possible.
10/10/06
Well, if nothing else, it has been a whirlwind of ups and downs with no middle ground to speak of. As we went into the weekend, Samuel's gut seemed to worsen. You can now add anal dilation to our list of things that we do for him. After all this other butt stuff, I thought that this should really not be as big a deal as say, the fleet enema which was beyond imagination in the pain that it inflicted. So, he is easily a size 12, comparable to a newborn. We could have went up, but had started with an 8 to be sure so we stopped the torment there. Sunday was so bad that I seriously considered the ER again. We could not control his pain and I was again afraid to feed him. IV fluids did seem to help and suddenly Monday, it was a total 180 from the day before. The GI we saw last week said in order to get him in for a stat Upper GI contrast study, he would have to be most likely admitted. Well, Sunday, he should have been. Mark and I had at least an hour's conversation about where to go, what to do and who to choose if we do indeed find a stricture. What I was thinking is that I cannot believe is that a kid can have this much pain and suffering and no one can find anything wrong that they can treat. This spiral of insanity has really become out of control. A few months ago, it was as simple as not letting him eat certain foods and we stayed out of trouble for the most part. Now, it just doesn't seem to matter at all what we do. Even IV fluids are only keeping going what a few months ago clear fluids through the G-tube did. Without IV fluids right now, we would just be inpatient dependent on theirs. Sunday, Slimy did not even help. In fact, he sat on the toilet and all out refused to poop, even the 350cc's of solution, he held in. I sat and screamed at him to push and once he finally did, all we got back was the solution, nothing else. My Lord, this is just becoming insane.
Well, to add even more insanity to it all, Monday he ended up doing perfectly fine, pooping, eating a very limited amount of foods. We had planned to take and notify al the doctors we could that someone needs to do something and try to get in somewhere. But instead, I just e-mailed our Onc to see if the labs could be done there and if the contrast study could be done there sooner. As you see from the pictures above, we went hiking for a couple hours in the afternoon. And Samuel did great, had a lot of fun and was never bothered by his butt. The day before he screamed for literally hours until I thought we would all be insane. Mark's Dad came and took the older kids away in the afternoon and I was glad to see them go because here was just such a horrible place to be. We had a nice little jaunt yesterday as a family and leaving this house and all the misery that seems to be stuck in these walls. Unfortunately we have to come back. Things have become so unpredictable and quite frankly, when things seem normal, we just want to get out of here and live a little. Make some fun memories to help ease what our lives have become suddenly.
In fact, just in the last few seconds, Samuel started puking again. Ugh! I guess I should not be surprised since he has complained of a stomach ache off and on today. Asking for food and then not eating it because his stomach hurts. He is hooked up to the IV fluids right now so I at least don't feel like I have to try to play catch up through his gut, but seriously, living like this is unbelievable. I just cannot believe something could get this bad and NOT show up on a scan, yet it has certainly happened in the past.
So, today we went in to get labs done, all the special ones requested by the GI. I haven't seen them yet but hope to tomorrow. I want them to be good, of course, but by the same token, I want something to stick out and guide us to finding this. Our Onc agreed with us that waiting til 10/25 for the contrast study was way too long and they got it on there for this Friday. So tomorrow I will call and let the GI know about the timing and what is going on. Our Onc was also going to try to communicate with her soon. He is hopeful that we still have some time before 12/4 to figure this out. Unfortunately now, if they find something they can surgically fix, it will need to be done immediately, not two months from now. And if they don't, well, Samuel suffers, and we all do until it gets so bad that someone decides to admit him to the hospital and we go to live while they troubleshoot. I would be fine with that now if I thought someone might actually get on the ball and do this, but unfortunately we cannot make ends meet should I need to be gone for an undetermined amount of time. Worth it, yes, if they are looking, finding and fixing. Not worth it if we get more of the treatment of the past few months. ER, admit, and nothing done. Days like Sunday did not make that feel like hospitalization was real far off. Nights like tonight do not make me feel hopeful about things in his gut either. I just pray we see something Friday that gives us a starting point. If they do find something, we go to Oregon. If they want to admit him here, then most likely that will become a very tricky situation indeed. This is what we spent most of our hour Sunday discussing again. A very familiar conversation, where do we go?
And of course, Samuel's port decided to NOT draw again today. It had to be declotted again and it took over an hour this time. It did finally work, but now that we have had to do this twice in a month's time and we are accessing it at home and using it, it's useful life is looking rather shortened. This one has almost served us a year. So, it is looking like there may be a few more unexpected surgeries on the horizon if it doesn't start behaving properly.
We were hoping to do some more trail blazing tomorrow before the weather turns rainy here so we will play it by ear and see how Samuel is. As I told the Onc, just flip a coin. Either it has been really really good, or it has been unbelievably bad. I desperately want out of this nightmare. Samuel is doing the puke cough again so off I go.........
Friday at 7:45am....contrast study. Please pray.
10/6/06
As promised, Medicaid did call our new PCP and also even managed to get her all our records. One thing I did not have to do so give him props for that. He also told our PCP to call the GI to "refer" Samuel so all of that was in order when we arrived.
Note, that I am NOT complaining but wouldn't you know that since we had a GI appointment today, Samuel's GI completely cleared up. Over the last few days, things have been wonderful for him. Well, we still are not letting him eat the no-no foods so he basically has bananas, yogurt, pretzels, and cereal for his mouth. Regular feeds through his tube. Things are entering and exiting well. Totally figures! As Mark said, fixes itself long enough to give a person hope. I am thankful for the break in the screaming which has at least been fewer and farther between. Samuel has had some happy moments and has even played with Daniel, instead of the usual fighting they do. Of course tonight, he is crying about his butt again...........
He did get Anna's cold, and hers seems to have finally cleared up. For him, I was able to give him tinctures and good stuff in his tube and his is about gone today. So about three days for him and over a week for her. His gut was even in good enough shape that I was able to juice some fresh fruits for him, something I rarely do anymore since he lost his stoma because everything burns on the way out. About the time I started the tinctures his GI cleared up and started behaving again so I don't know if there is a correlation there or not. Just probably dumb luck. Daniel got a touch of the cold and I felt like I was getting it, and now it has passed. Thank God! That is all I need right now.
We went to see the GI today and we came home hopeful...for once. There is one thing you can count on having a kid with Samuel's medical history. Other than Medicaid who obviously DID NOT look at his records, there is shock value in hearing his story. I sent the medical history and a brief overview cover letter to her ahead of time. But she came in and wanted it all reiterated with lots of detail. We probably spent at least one hour of face to face time with her if not longer and it was not the usual rush rush visit we are accustomed to. So we went over everything GI related in very descriptive detail and scratched the surfaces of the cancer and shunting, etc. I was impressed by her sincere sympathy and she was impressed by Samuel's happy go lucky attitude. Her comments were similar to most everyone else's who take the time to hear it all and see Samuel, "It is unbelievable that he has went through all that and is like this (meaning joyful) today." He was great right up until she wanted to look at his butt and then he was so afraid she might touch it that he lost it entirely and had to leave the room for a few minutes to get happy again. For probably the first time ever, we found someone who speaks our language, meaning, when I say his food is coming out undigested, she thinks that is a problem. When I ask how a kid can be constipated when he does not have the anatomy to be constipated, she gets that it has to be anatomical. When I say that has has had two major GI dysfunctions in the last two months and tell her about his diet, his enemas his IV fluids, she agrees that that is NOT normal. When I say that he cannot eat food like you and me, she gets that that is A REAL problem. When I say that one day he is fine and the next everything goes haywire, she speaks that language because she has heard it before. When I say that all of the above would not be so severe if he did not have to poop out an orifice that is too small and burned out, she is sympathetic to his pain. When I say that laxatives are not a solution, she agrees. Reglan was never brought up, thank you GOD! When I say I want a solution, not a crutch, she gets it. When I say it has grown progressively worse over the last few months to a point that we cannot even keep managed or decent as far as quality of life goes, she agrees. And it helps that we speak her language as well, knowing all the correct medical terminology and which testing has been done, the results, what the scans showed, how many have shown nothing when there was something later found surgically, etc. So, she talked to us a bit about chemo and the upper GI and the nerves, etc and this will strike a chord with Monika because we have been talking about chemo and nerve damage to the GI for years. And she has seen kids end up with dead bowel or parts that just turn off and on, like Samuel's seem to. She also has seen kids oh whom food can become a plug which builds over time. We talked a lot about scar tissue and motility and digestion. What she did mention was a pseudo obstruction which is where the intestines react as if there is a true mechanical obstruction or blockage. However, when tests are performed, no physical evidence of blockage is found. It can be congenital in babies, but can be caused by nerve damage from chemotherapy. Pretty much, the only treatment is what we do for him now. Switch to clears until it clears out. All these babies have feeding tubes and these obstructions can happen very frequently and for no reason. But in their cases, they have a colon to help with acid and they have correct anatomy. So, we are getting some different lab panels done to check on digestion, many of them I have always wanted to see so that is perfect. Also, she ordered another upper GI. We told her every one we have had done showed nothing, but she needs a starting point. We hope that since things have went so much farther downhill since the last one in April, that perhaps we will see something. The best time to get this done is when things are okay with his GI, but she will order a stat test when he starts having issues again to compare. Of course, it is not until 10/25 so who knows what his gut will be like on that day. But the bottom line is that she does believe he has a second issue besides his anus as we do and seems interested in finding it. Pray we find it, and also something that can be treated because pseudo obstruction cannot be treated surgically if you cannot find it on tests so that diagnosis would not be the best. Plus then we would be faced with the decision of ileostomy just for pain relief which would be awful for everyone in the long term because that would mean a permanent stoma. Pseudo obstruction sounds plausible, but still doesn't take into account the liquid vs food problem. Bottom line, today does not feel like a wasted trip. Finally, someone who speaks our language and HAS heard of these issues and does not seem TOO BUSY to help.
Okay, now we have a PCP visit on the 17th. I want to make sure I still like her. She has all the records and is planning on taking us on, but a lot has changed in the last 2.5 years so I want to be sure we speak the same language as well. If it goes as well as today with this GI, then I am sure it will be fine.
So, Samuel has PCP on the 17th, Onc on the 20th, I have the hearing on the 23rd and the upper GI on the 25th. Am I tired of all this or what? Somewhere in there Kaysha has a birthday party, the 21st at home, 20th at Nana's. I might see if we can do the upper GI in Tacoma if they have an earlier time.
It has been a long day and we all feel wiped out. Much love.
10/3/06
The days seem long when Samuel is miserable and yet there seems never enough time to do everything he needs done. Between his food, his IV fluids and Slimy, where does the day go? I need a part time nurse to help keep all these things on time especially for days like yesterday when I was on the phone most of all day.
Samuel has spent the weekend teetering on the edge, things with his poop could just go either way. Sometimes it looks like it is reconciling and then it looks like it is getting worse. We tried a fleet enema this weekend since it is supposed to clean out even better than my usual concoctions. Well, it did seem more effective if you like poop from one end of your house to the other. But like chemo, it's effects were ruined by the amount of pain they cause and not worth the trade off. He screamed for hours because the thing burned. Not even the tub helped kill the sting so we won't revisit that ever again.
One of the calls I made yesterday was for the foley catheter to do his enemas with. I called the supply company who used to deliver his ostomy bags. They have it, but apparently Medicaid does not cover them with a diagnosis of constipation or for the intended use for bowel management. Are we all rolling our eyes? Well, I told them I had a little friend at Medicaid and I was going to call him up. Plus they could not find our Onc here in their system so they used OR doctors, but OR does not know it so I was supposed to call them and let them know.....yeah. As if I don't have enough to do already.
So I also called the Medicaid attorney to see if he contacted our representation. I guess he gave up on that so I gave him the direct line. I got off the phone thinking he was quite an ass. Our Rep called me back to be sure I wanted her to speak with him and I agreed since I have enough to do. A bit later she called me back to agree that he was indeed an ass. And apparently the Oct 23 date for hearing is actually a prehearing conference, not even a hearing at all. So I guess I just read hearing and skimmed the rest. So it is staying on the schedule. But I guess Medicaid was very unimpressed that he might have to prepare for a hearing that might not be needed and did not want to agree to it at all. So now, she is going to represent us on the phone for the conference in October. I will be on the phone too, but she did not want me to be alone with this ass. I told her that I can hold my own quite well, and it was probably a good thing it was not an in person meeting or there might be a real problem indeed.
So, it has been at least three weeks since I have heard from Medicaid (medical director). Since I called him about his letter above. So I thought yesterday would be a great day to call him up. I got his voice mail and left a message that I had not heard from him in weeks which was strange for him and I knew he was thinking about us since I had spoke with his attorney twice now so if he was still able to speak with me directly, he should call me. Mark thinks he probably LOVES my messages. Well, he did call me on his cell phone on the way home again. He asked why I thought he could not talk to me and I said that his attorney was not able to and since he was supposedly finding us doctors, etc and I never heard back, it was easy to assume. Well, he informed me that I can call him anytime in this regardless of what is going on and he will call me back. Hmm. Well, apparently our old PCP did agree to take Samuel back but I guess in all the huff of the hearing, he forgot to tell me. So we do have a PCP now, and one I actually used to like so we will go see her soon. Mainstream doctor open to alternative medicine, or just saying no to medicine altogether, gotta like that. And then we did talk about the hearing and why I as keeping the date anyway. I think Medicaid hears what he wants to hear at times and I asked him how many times he thought Dr. Levitt would come to OR if we cannot make it for the surgery. Of course, he only wants to "think positive" and assures me that he has set up all these meetings between doctors and that this IS going to happen. So I told him about Samuel, how he is now, what has been going on and about the stricture I believe he has, etc. I told him that we need a competent GI now, today to help troubleshoot this and one who will not take inconclusive tests for an answer. For the first time ever, he actually asked how Samuel was doing and I told him. So, today he is calling our PCP and asking about another doctor I made an apt with who is a GI.
And that is a whole other story. The Pediatrician who called me a week or so ago and told me to find a Resident, also referred me to a GI whom she said is a lot better than the ones in Tacoma. Since I have already come to that conclusion about Tacoma and note, Tacoma is NOT calling me with any solutions, I made an appt with this doctor. Her staff was very unimpressed with making an appt for me without a written referral and even though I mentioned this Ped's name, she is not really our doctor. They asked if I wanted to see their ARNP, and I told them I think we are a little beyond that now. Usually find I hate staff in doctor's offices and being that I used to work in one, I know all the BS that goes on there. So, pushy me, I have an appt this Friday. They wanted our referring MD to send records, so, since I am the referring MD, I shall. I also included a note that if they were only going to offer Reglan of this was too complicated for them, LMK so I can cancel this and NOT waste my time. This is my biggest pet peeve, wasting our time but I console myself thinking that if we don't try to find someone who will be interested in looking, we will never find this problem either. But at any rate, this town is a bit of a drive so I have planned other things we need to do while there so we are not going JUST for this appt which might well be a disappointment.
So, all that said, I told Medicaid that I made this appt and their staff was NOT impressed with making an appt without an active referral and that I don't think doctors are very accountable to parents when they don't think any other doctor is involved. So, he will be calling them today along with our PCP to see if they can "handle" this. And he says he is making it his mission to get Samuel doctors who won't shrug their shoulders when things don't turn up immediately. Medicaid is annoying to me because I think he does in fact want to help and improve the care for Samuel, yet does not realize how important this surgery is to us. He asked me if I knew how many anoplasties our former surgeon in Seattle had done and their outcomes. I don't, but I also don't think the surgeons know the outcomes all the time either. The patient would have to come back either way. Most people who have a bad surgical experience will find another surgeon. Medicaid does not know about the huge following Dr. Levitt has and the massive amounts of personal referrals he has vs. our former surgeon who has none on record. He is not suggesting our former surgeon do this and does understand why they are out of the picture, but is trying to rationalize outcomes which cannot even be statistically compared. We had quite a long conversation in which I mention if this surgery is "botched" what it will mean to Samuel. He went crazy saying that when I mention botched to any surgeon, their worry radar goes up. I told him these surgeons SHOULD worry. Perhaps if they worried more, Samuel would have had less surgeries overall. I asked him point blank if he was having his butt reconstructed, who would he have do it, a transplant surgeon or a butt surgeon. Then I told him that if he even mentions outcome, I will not even believe him. So he chose to not answer. We all know the answer though.
So, finally, I brought up the foley catheter thing and he said he will take care of it today. So, that was at least a good thing. Should have known him when we needed ostomy bags. All in all, this phone call was about 30 minutes and I cannot help but think that if he had never gotten fed a fist full of lies from Children's, it might have been easier to get Samuel the care he needs. He is supposedly calling me today so I will have another list of topics for discussion. He said he will never forget me, and I said that most people don't.
So, other than all that Samuel now is getting Anna's cold which annoys me greatly. Fluids have been helping the poop move through eventually so that has been nice other than that we spend all day hooking up stuff and he spends all day on a couch or a bed. I know he is sad inside when he gets hurt on something while playing for the five minutes a day he gets to play, and he cries extra long and needs lots of hugs. He slept with us last night and hasn't done that for a long time.
Thanks to everyone who send notes and love after my last update. It means a lot.
9/28/06
It has been hard to update since I feel so...shall I say...unimpressed. We were looking at doormats yesterday because we needed something water resistant and I noticed that they all say Welcome. I asked why they don't make any that say Go Away. I really wish there was because I would buy it. My mom used to have one that said One Nice Person and One Old Grouch Live Here. That would be appropriate too. Someone came to the door when I lived with my parents and asked if I was the nice person or old grouch. Not much has changed, I am still the old grouch as I was then. If you wonder how I am, that about sums it up. I wonder what someone would do if they walked up to your porch and your doormat said Go Away. No one is coming to the door anyway, I am just feeling anti social and grouchy.
Samuel has improved slightly so we took advantage of it and went for a drive and a short hike. Mark has been trying really hard to pull me out of this funk. It is only working slightly because Samuel is feeling better, after some nine days of misery. If I let him eat a whole bunch of food, I am certain we could start this all over again. He is at least getting his full strength g-tube feeds again which is a very positive thing. His butt is looking better and he even pooped in the honey bucket at the lake. There were mostly older couples out hiking today and they all seemed to enjoy my kids potty humor since you would swear they never used a honey bucket before. Well, it would have helped if they put a light in there at least.
I have wrestled with some of the feelings I had two years ago when Samuel's gut kept filling up with CSF and we had to go in weekly to have it tapped off. I felt on one particular night, like people in third world countries must feel. They know their child has something seriously wrong, and either there is no medical help available, or they canont afford it. So they watch their child suffer endlessly until they either die, or by some miracle, someone or God helps them. It is an absolutely crippling feeling knowing that there seems to be very few people who actually want to help Samuel. Knowing that there are people who would have us take incompetent help which would inevitably ruin Samuel's life even further is depressing me terribly. I just feel like there is something else we are missing, or THEY are missing because it seems clear as day to ME that there is a problem besides his anus. This feeling has nestled itself deep in my soul and just as I have felt things have been wrong in the past when no one else saw it, I am certain that there is something else. I feel like my soul and Samuel's are intertwined and I have from the day he was born. I cannot explain to you how I know, I just do. Knowing that we are stuck this way for God knows how much longer seems unbearable this week. And again, thankfully, he is on the upward swing right now, but as we all know, that can change at any given moment and there is not a thing that anyone can or wants to do about it.
Since I am so depressing today, I am ending this here.
9/26/06
Yesterday was busy. Samuel woke up in a puddle of his own poop. My favorite way to be awakened, how about you? I spent the morning with the kids cleaning off the porch and kitchen, doing laundry and the regular household things. In addition to that, we had to get a liter of fluid into Samuel's tube and also IV fluids into him. IV fluids take two hours to run and each feed takes 30 minutes so he spent four hours tied up to tubing. And let's not forget Slimy and the time it takes to do the enema and all it's misery. It just seemed the whole day was spent hooking up one tube, putting water in, hoping to get something out. By early eve, I was wiped. Tonight I need to make his soup and try to relax after a very hectic last two days.
We spent the afternoon in the clinic. We got another x-ray which shows everything spread out, rather than mounded up. So I guess that is better, but still waiting on the final verdict. He is not better. He has had some diarrhea which is saying something given the amount of poop still lodged inside him. Very little of what I see on film is making it out still.
I had a long talk with our Onc about what I think is going on here. I still think that we have a kink or narrowing up higher in the small intestine. I have thought this since February when things went suddenly wrong. I think the anus problem is not helped at all by what is going on above. And of course, nothing ever shows up on scans yet this incident we are dealing with now happened for no apparent reason and all the x-rays are showing no impaction down in the rectal pouch or lower intestine because of the enemas. This is good, and gives me, anyway, a clearer impression of what I think the other problem is. I reminded our Onc today of all the past history and months of dealing with these little blockages that resolve, we let him eat and they come back again. It does us no good to go fix his anus if we still have this issue in the upper GI. And of course, if there is a stricture there, then that becomes a surgical issue and there is only one surgeon I want to do that at this point. Our Onc wants to help us in any way he can so agreed to try to get as many minds on this and possibly finding out of we can do a contrast study with food, rather than liquid. We know liquid is fine, it is when you add food that a "cork" forms. The bottom line is that Samuel cannot eat most foods 90% of the time which is not fair to him, or to us. Every time I bring this up, it gets swept under the carpet and I am tired of it. Samuel's problems have not been treated as such because I know how to keep them in check enough that he is comfortable. I have to deal with every food as it exits and since most of them don't want to, that is a big problem. Most foods come through undigested at this point with lots of acid and burn him badly. I could let him eat everything he wants to and let this become very acute and take the risk of busting the only gut we have left. I told this to my Onc today. Why do I have to allow this to become a visible problem for it to be taken seriously? He agreed that I should not have to do this. So, I pray that maybe God has stopped us from getting the surgery done sooner so that we can find this other problem and solve them both together. Our Onc said that it would actually be a relief to find a stricture because at least then we would know how to fix it. Not to mention that it would explain everything. It is just not okay to keep living like this, please pray that someone will come up with some brilliant idea for finding whatever is hiding inside him.
Tomorrow Mark will reaccess his port and continue with the IV fluids. We skipped today and his needle has been removed so that he could bathe after the waking up in poop episode. We also need to get to the store for more supplies for the enemas as we are running out. Our days have started to revolve around hooking up one thing or another to Samuel's body. He doesn't even object. All he wants to do is lie around all day anyway which is the real only visible sign that he is not feeling well, other than the screaming when he poops. I reminded our Onc of this today. Samuel doesn't show typical symptoms for anything. The pain has to be BAD before if manifests in his actions. He can take a lot which is a very sad fact. I told him to ask our former Onc how many times he was baffled by Samuel's atypical responses to things. We just need someone to really listen to what is going on and want to help. I think he truly does, I am just not sure if the resources are there for it. We need a MD like House, who won't give up until he gets a diagnosis. Only maybe not such an ass. Mark thinks I would love to walk toe to toe with House.
Topping his day off, he got stung by a bee on his eyebrow. Anna has a little cold as well that I hope we all DON'T get, Samuel included.
The attorney for Medicaid called me today to see if we had legal representation. I asked him why he was calling in the first place and he commented it was about the hearing. Apparently he and the head honcho have been working on their case. So that pissed me off all over again since they have apparently been sitting around trying to figure out how to stop us from leaving the state to get help while I am trying to solve the puzzle of Samuel. Samuel is miserable and they are sitting around trying to think of ways to keep us here with people less competent who will most like screw things up worse than they already are. I haven't heard from Medicaid in the last two weeks since I got the copy of his letter so he has probably been advised to NOT call me. So I think I will call him up tomorrow and have a chat about why his attorney is calling me. I was going to do it this afternoon but Mark had six wraps to spray.
So I sent Samuel's Medical History Page around to some pediatric offices here in WA to see if any of them wanted to touch us. I actually did get one response. And sadly, she was very nice, down tot earth, etc. But she only works three days a week and knew we needed someone who will be available to us. So her suggestion was that we get a Resident in Tacoma to take us on. You know, because Residents work such crappy hours, but they would have the TIME to devote to our needs. She understand we need someone with time to spend, but I guess once you are an established MD, you just don't have any time for complexity such as Samuel. So, with all our history, someone suggested we only rate a Resident???????? I think Samuel should rate the best of the beat. This Ped called me back because she thought we deserved at least a call after all we have went through. I will give her props for being honest and realizing that most MD's don't have TIME for us. And most don't want to devote TIME to us. She told me what I already believe to be true, most MD's only want the easy cases, easy money, don't call me after hours and just don't call me at all. Not many want to help a little boy who suffers daily because they might actually then have to WORK. So, I think I will definitely be calling Medicaid to see how far he has gotten on something he was certain would be SIMPLE.
Props to our Onc for wanting to help when no one else in this state does. I just hope he can. This is becoming a very long drawn out ordeal and I am not seeing the light at the end of the tunnel. I really want to.
Thank you all for your kindness and prayers. Special thanks to Krista at Mr. Peabody's Wool Soakers, Stacy from Over the Rainbow's Edge, Sunshine from Flutterbye Baby, and Bridgett from Desert Blooms for the charity raffles for Samuel. Thank you to all who participated. Your generosity has deeply touched our family. May God bless you and yours always.
9/24/06
As you can see from the pics above, Mark got Samuel's port accessed and working today. Thank God for small favors! This was Mark's first time to access his port and of course they both just did great. It drew blood immediately and worked fine all day. Samuel was able to get his fluids tonight and we left the needle in so that we can do him again tomorrow. I really think this will be helpful in the long run. I think his body is stealing fluid big time from his gut. While that is not evident on the surface and everyone at the clinic was telling me that this was not so, it is. Mother knows! Right after his bolus tonight, he pooped quite a bit, but today's output has not equaled yesterdays, it is probably half. And the poop is still not poop, but more undigested. The myrrh powder is working well on his butt but now everything including his poop smells like myrrh. It seems to be drying out the skin nicely and resisting the acid so I am happy about that. We shall see if it continues. Let's just say he is quite aromatic. Dr. L. says to keep doing the enemas and a laxative diet to try to work things out, but I am skeptical since we have been already dong this since the day I knew something was wrong. I still have a clinic appt Tuesday which I might keep to get another film so see if we have managed to get any change. It would not be so bad if he did not have to poop all this awful stuck stuff out. If he had his "airbag" then he would just be a little happy go lucky Pooper because it would not hurt. His tummy does not hurt, just his butt.
Some have asked about Samuel's pain and about why his butt hurts so much so I thought I would post this here in case anyone else wonders but doesn't want to ask. Samuel does not have a mucus membrane on the tip of his anus like you and I do so anything acidic burns the last inch or so before it comes out. The smaller his anus gets, the more smearing happens on his skin. Even if he is on the toilet, it is like squeezing toothpaste out of a pin hole. You can imagine the mess that would make. It gets sore enough that he cannot walk or sit for periods of time. He is adamantly against anything on it such as creams, etc, unless it is not totally broken down. This skin on the outer surface has been likened to that of a burn victim. It was literally burned away by chemo so that it was unrecognizable. You could not tell where the anus even was because the whole thing looked like a raspberry with his anus just wide open and draining. So anything on the outer skin is awful too and it only takes one bad poop to do it. This is where all the pain comes from on the exterior.
The anoplasty would pull mucus membrane out from the rectum cutting away all the scar tissue and basically giving him a new membrane and removing the stricture which closes down his anus. If he pooped out of a normal size anus, then the smearing is not as big a problem. If he has a mucus membrane that is healthy, then all the pain associated with pooping will be minimal. Everything else in the gut should get in line and learn how to behave once his anus behaves. We were told a year after his surgery his body would have learned how to compensate for no colon. However, his body cannot compensate because his anatomy is not correct and tries to heal shut. So that is it in theory, you see why we don't want to wait until December to have this done. It is cruel to make a child live like this. It is hard to imagine we have done this for over a year now with very few breaks in the cycle. In the decent times, I think my mind just goes into denial about it reoccurring because I just want to savor the days that have minimal screaming and pain.
While we were at the beach, things were pretty nice. It was easy to forget reality when it is not slapping you in the face. Samuel does have poops that are formed and do not hurt him, but they are so few and far between that it is hard to remember when the last one was, even though it was probably last week. It just seems like the bad washes away anything good. Mark told me that when I start feeling hopeless and overwhelmed or just terrible in general, we could just take a ride in the Backus Bus. Well, that would be every day. So I would never get anything done. And unfortunately Samuel's gut doesn't care where he is when things are wrong so the pain and screaming are just easier to deal with here, rather than in a grocery store or stuck in the maze at Ikea with him screaming like that. What he does on video is exactly what he did in Ikea, only he was picking his butt. Pain has no modesty. I feel like I am dwelling on it here, but it just never goes away. I cannot even imagine what it will be like after the surgery, if everything that is supposed to happen does, and he gets his miracle of a new butt. I cannot imagine a life without pain for him because it has been so long since I have seen it.
We thank you for your prayers and love. They mean everything and get us through.
9/23/06-eve
Many have asked after watching the video how I can stay calm and not collapse beside Samuel crying. I thought of one journal entry from last year at this time, some of you might remember it. I wrote it several weeks after Samuel's surgery to reconnect his gut. It sickens me to reread this and know that I can still fully relate to it today. I never thought that a full year later things would still be so wrong.
I need a break, but there isn't one.
Don't get me wrong, there are a lot of things "broken," but the kind of break I am looking for is one where you push a button and make it all go away. Like mute on your remote, you push it, all sound disappears. I want all the painful screaming to disappear. Is 24 hours of silence too much to ask for? I would like to hear myself think. Daily there is a race going on inside my head. A race of thoughts, to do lists, and a lot of things that come to the fore front of my mind for a second and are then lost in the screaming around me. I never know what day it is, or where I left the last glass of water I poured myself. I should write my to do list down but when I am near paper, I forget. I want 24 hours alone with my own thoughts, to sort them out, to sort this ALL out.
I need a break, but there isn't one.
When does all the suffering finally stop? When do we exit this Black Hole we are living in? When does the torment that has taken place over the last 17 months end? When does the roller coaster stop?
I remember back in the days of amusement parks and childhood, I never wanted the roller coaster to end. And it always did, too early. Now, I would give anything to get off and it just keeps going and going and going, like the Energizer Bunny. You see the station, you slow down, you feel hopeful, but then someone kicks it into high gear and you are off again. The screaming, the flailing of arms, the feeling like you might really throw up this time from it all. When do we get off? Do we ever get off?
I need a break, but there isn't one.
You would think that at night, when your kids go to bed, then you would have a break. But no, by then, you are so tired, wired, stressed out, and pissed off at it all, there is no relaxation. And unless a lot of drugs are involved, there is no sleep for the tormented. He wakes still, several times a night. He cries. He ONLY wants mama. I go to bed, I hear screaming, I wake up to screaming, I go through the entire day, with screaming. I want to scream. I want to kick the walls, I want to drive it away with my fists. But none of it helps. I wake up to a new day, but it is the same day, over and over again. It might start off well, but it ends the same. Screaming, torture and lots and lots of begging for it all to end. Both by him to me, and by me to God. When does it end? Are we the forgotten ones tonight? Another sleepless night is before us, I feel it. One word sums it all up, ridiculous!
I need a break, but there isn't one.
No one should have to work under these circumstances. It is cruelly unfair to have a child who needs you so much and not be able to make ends meet. I already have a full time job, the baby who seems to need me every five minutes tod
