12/9/06
Samuel is doing as well as can be expected given he is still so newly post-op and his butt is still understandably sore. He is having some issues with continence. As he says, "It was s surprise poop." Some slides through and suddenly he notices and is able to hold the rest til he gets to the pot. He is unhappy about being in diapers but does not want to poop in his underwear either. I swear if this ever becomes normal, I am buying him all new underwear because every pair he owns is stained and looks dirty even when it isn't. Being that they are all white, well that doesn't help much either. With diet, we have stopped the initial diarrhea and "fire poop" as he now calls it. His butt looks beautiful. You can now see an anus and normal looking anatomy. Previously, you just could not find it at all. It is our hope and prayer that his sphincter will regain it's tone and he will remain continent. Our ND feels like Samuel will be continent. As he says, things have just been changing so fast for Samuel that his body has never been able to adapt. Now, he will have the chance to adapt. It will certainly take us some time to adapt to not having his butt close up. He has been very tired so is taking regular naps and going to bed early too. Today has been the best day and I expect they will only improve from here.
He spent the morning playing with Anna. They played with all the dinosaurs and I thought about how glad I was for him to get his playmate back. At the hospital, on his worst day for pain, December 5th, he really wanted to play with his toys, but because he felt too awful, he wanted ME to play with his toys. So I colored in his coloring book, put together dino magnets and played with all his stuffed animals. He watched. That day reminded me all too much of certain ICU days back in 2004 when he was in pain that was not managed well enough and all he could do was lie in bed, tremble, pick his lip and try to distract himself with TV. Like those days, he was hyper sensitive to everything and even resorted to lip picking. I was already feeling used and abused but seeing that brought on some PTSD. Everything touching his skin was annoying and he wanted it off. It was a very long emotional day that brought back too many memories. I was glad it only really lasted 24 hours which seems like nothing time wise, but took forever to get through. Added to the list of days he has suffered without adequate pain control, it was just another one too many. I knew it would happen, I warned the doctors and asked them to have a plan ready, and what ended up happening was that we chased pain all day long. It is very hard to manage pain and catch up with it when it is out of control. Our RN from that night was shocked by the amount of pain he was suddenly in. I heard later that she told a lot of the RN"s about it and how miserable he was. They were shocked when two nights later, he was bouncing off the walls and we were being released home. That is Samuel. He defies logic. I hope that the Residents at least learned that they should listen to the parent, they might actually know what they are talking about. Might save them a 3am wake up call.
Overall, I am happy with the hospital there. Communication was certainly better although initially I was wondering if this might be a disaster. The majority of the problem was Levitt leaving orders and then leaving. Each day orders changed and one day the female resident told me it was kind of hard to follow orders when the doctor was no longer there. Getting released was a wonderful experience rather than the tug of war I am used to in Seattle. This was refreshing. I did not see the attending surgeon again before leaving but they want us to come back for post op 12/18 so I will be able to visit with him more at that time. It looks like the residents do not turn over as quickly as they did at Children's so should be need to be inpatient again, I think that we will be taken a lot more seriously when it comes to pain management. We will also not have a "visiting surgeon" which will help with the frustration immensely.
Some of the good things which came of the trip are the lessons we learned. Mainly, we are better off in the care of the people who have cared for us and know us. Our situation is much too unique and obviously easily misunderstood by the outsider looking in. More on this in a minute. We also decided on an area to relocate which will put us pretty much centered between Portland and Tacoma hopefully eliminating the need for Seattle's intrusion ever again. It also leaves us a decent drive from Mark's parents so the kids will not be deprived of their grandparents and vice versa. I know God has something in this area for us and we will find it when we are ready.
The surgical experience with Levitt was bittersweet. I was not prepared for how much this would affect me once I arrived home, but it certainly knocked the wind out of me. I assumed we would meet him prior to the surgery. Like when we were up in our room. We did not. I was called to surgery waiting and Samuel was put to sleep before I even knew what was happening. Once it was done, there was no turning back. Dr. Levitt was just finishing up his lecture and they had to go call for him several times to come out. Everyone was ready to go but him. He came in and greeted me and was very kind. I got the impression that Samuel was in great hands and for once, was not worried about him at all. He told me he was again honored to do Samuel's surgery and that he would look everything over and then give him whatever anus size was appropriate for him. Another surgeon introduced himself to me saying he was the one who organized all of this and I thanked him, then thanked them all. I was led to the waiting area where I basically read a book and happily waited for news.
Partway through the wait, I noticed a lady come in with her family carrying her baby in a wrap and I thought how cool that was and she walked over to see if I was Jen. Brought me coffee and lemon bread. It was such a treat! I was shocked. She spent some time visiting and helped pass my time. Things seemed like they were going well. Almost enjoyable given the circumstances.
I was called to be told they were closing up and things went well, then called 30 minutes later to go back into a private room for post op report. Both Levitt and the attending from OHSU, Dr. S. came. Initially, I was told about the surgery, the findings, the anus size, how to help reduce his bowel movements, and post op care. I could tell the atmosphere was different. Initially, he sat down next to me and talked to me like a friend. Now, he was talking down to me like I was an idiot. He finished up by stating that he never wanted to do surgery on Samuel again. So, we got through the post op stuff and move on to Oncology. Some direct quotes: "You OWE it to him to finish his protocol." "Until a trusted Oncologist that I know, or Dr. S. knows says you are done, you are not done." "I know that chemo caused this but you have to remember that it was actually an Oncology problem which got you here." "There are doctors worthy of trust. I feel like I am one. Dr. S. is one. The Oncology team here is very good, perhaps you should continue his treatment here." "I know it is a lot to think about right now." "When you were going to come to Cincinnati, I asked our ALL expert to see you to determine if you should be done." I looked at Dr. S. and he looked lost in the conversation. I was absolutely floored. Then he sums up everything by saying he knows NOTHING about Oncology. Well, obviously. When he started in about this, in my mind I distinctly remember hearing "Bite your tongue, you say anything now, it will be very bad." So the only thing I did ask was if they were unaware that I have an Oncologist currently. Neither of them seemed aware. I guess they just thought we have done whatever we want at this point. Obviously, he read the crap and the lies from the Medicaid file....and BELIEVED them. I told them we have done everything we could do, that all they have to offer us now is too toxic to Samuel's gut. That seemed to stop this conversation. And as if that was not enough, he then told me that he wanted me to realize how much work and time and effort was put into the planning of this surgery and how they did it to help Samuel and hated the bureaucracy behind all of it, especially WA Medicaid. It was a miracle that this all went off without a hitch, etc. It made me feel as if I was not thankful enough. Was I supposed to kiss their feet, cry, bring gifts? What? I have told this to several people who have all asked the same questions. I don't know what the deal was. Apparently, I am an idiot who is not getting my kid proper care and ungrateful as well for their efforts. I thanked them...again. I have already thanked Levitt in writing and by phone, several times. I thanked Dr. S. also several times previous to this meeting. Levitt's pager went off and he left at that point. I knew I would never see him again. I was right.
I went back to my room to call Mark. Absolutely floored and hurt. I would have cried but I was too drained to have tears. When you expect this type of treatment, you have your guard up but when it is the LAST thing you expect, it is like a knife to the heart. He helped Samuel. I will always be grateful. I feel like I was stabbed in the back. I guess the tears I was unable to cry there were saved for home. Samuel never met him. Other than the surgery, he did not give Samuel the time of day. Samuel does not know what happened to him. As far as he is concerned, his butt still hurts and he went to the hospital for nothing. Just like Seattle. We know different of course, but he doesn't. I wonder if Levitt asked that Samuel be sedated prior to his arrival so he would not have to "meet" him. I did not have huge expectations for this hospital stay, but I did assume Levitt would take the time to meet Samuel for whom he flew 2500 miles to help. I thought we would be treated like humans, not criminals. It is funny how my gut feelings about things are rarely wrong. I felt like I was going to jail before leaving for this trip and was indeed made to feel like a criminal on this day. We were also right in saying the only thing worse than going to Portland would be going to Cincy. Had I been stranded there, things would have been even more frustrating than they were here and you can bet we would still be there right now.
The next day, I told the Resident to call Dr. S. and let him know I wanted to speak with him asap. He did come in the very next day and noted immediately that Samuel was NOT feeling well. I have always gotten a good vibe off him and will always remember him stating that Samuel has a very easily fixable problem, why hasn't someone fixed this sooner? So, I told him again how thankful we were for the opportunity and that I would never understand the amount of work put into it, etc. I then told him I got the impression that I was not grateful enough the day before. So I asked him directly, "Was I not grateful enough?" He said he knew how grateful we were and apologized stating that he could see how I might have gotten that impression. I told him that I did not get it from him or his staff, I got it from Levitt. I told him that was NOT the case and he told me I did not need to say anymore, he understood. I then asked what the deal was with the Oncology thing and he stated that they just think it is awful that Samuel did not finish his chemotherapy. He asked if I wanted a free Oncology consult. I explained very briefly what we had done, that we have an Onc and politely declined his consult. I had to fight off tears several times and I think he gathered that my feelings were hurt by what had been said and kindly told me I did not need to explain myself any more. I told him that I got the impression that Samuel's surgery was going to be considered a waste of time if we did not finish the protocol and he said that was NOT the case either. Perhaps not for him. I will take him at face value because I think he is sincere and it looked like he was along for the ride in much of that conversation. So, things between he and I are fine. He did say that he was going to talk to Levitt and let him know my feelings but I have heard nothing. I did find out Levitt stayed was there on the 4th and morning of the 5th but I never saw him again. I have thought of excuses for him like maybe he was tired, maybe Medicaid kept calling him, maybe he was annoyed by the damage to Samuel's body, I don't know. But putting the entire scenario together, I just don't think this makes much sense. Something happened.
Following the surgery, the Residents treated me rudely. They were there during the surgery and I am pretty sure there were many conversations about us because obviously SOMETHING happened between when I met Levitt before and then conversed with him after. When I asked to be transferred to Tacoma, things began to change, orders changed and everyone got a little friendlier. It all worked out with OHSU but it was probably one of the most stressful inpatient stays ever. You can imagine how glad I was to see Mark and come home. I felt like I haven't seen my house in a week and was almost lost here. I have been trying to pick myself up and put this behind us but I am having a rough time with this one.
Yesterday, I called the ND to check in and let him know Samuel had the surgery and that we were home. When he called, I picked up the phone and said, "It is so good to talk to somebody who likes me." He responded, "I not only like you, I admire you. You have kept your son alive." Now, he had no clue about our hospital stay and issues there, but it was certainly a nice thing to hear after this week's events. I told him a little about things there and his comment was that MD's in general are afraid of things they know nothing about. If you say you are doing something and are confident in it, they just don't know how to respond. So they get defensive. I asked him if the MD's treated him as an equal and he said they did. So I then asked him if I became an ND, would they treat me as an equal then too? He responded that if I become an ND, I need to come work for him. That was nice. I am just so tired of being walked on. I also talked to Mary and let her know Samuel's surgery was done and what was said. She was appalled! No one can make heads or tails of it. She reminded me that our Onc will always support whatever decisions we make and that these people have no clue what they are saying because they were NOT there. This conversation should have never happened. It is the type of thing that you never forget and no words or apologies can take away. Nothing can make this right as far as I am concerned. I will forgive eventually and it will become a distant memory but it will most likely never be something I forget. I told both people we would come visit them in January. Right now, I need a break from everyone. Devastating! Absolutely devastating. I did not ask for this, would not wish it on my enemy. I have to say that I think Medicaid was more understanding of our decision to stop treatment thn Levitt. And that is saying something!~
I am going to try to get into the holiday spirit. We have done nothing. No tree, no gift buying, nothing. I don't even feel like it. I feel sick. Can I postpone the holidays for a few weeks? So that maybe I can enjoy them? Right now, things just feel ruined. Mark says focus on the positive and I am trying to do that. This is just not the ending I was planning on.
Everyone thought I should send a letter to Levitt with my thank you card. At first, I wasn't going to bother but it has bugged me so much that I did it just to help work it out of my system. I am sure this will be helpful to anyone new reading our story who also thinks we are idiots.
Dear Dr. Levitt,
Let me preface this by saying how thankful we are to you for your compassion for Samuel and giving him the best chance of being normal. IMO, he has a beautiful butt now. I know this surgery will improve all of our lives. I will never understand the lengths, cost and time it took for OHSU and you to put this all together but I do appreciate it more than words can express. I pray this surgery ends this painful era in all of our lives. In our brief conversation after the surgery, however, I got the impression that I was not grateful enough for all of this and that simply is not the case. If I left you with that impression, I sincerely apologize. I was operating on four hours of sleep and very little food as Samuel was NPO all day.
This entire situation has been a living nightmare. I guess it is inevitable that all the threads will become tangled, confused and the truth obliterated as more and more people communicate about Samuel due to the complex medical history and not having one doctor who has been with us the entire time. Having people lie about you is one of the most horrible things you can go through as a parent whose child has had this many life-threatening complications. I would think given all our family has been through, we would receive compassion before condemnation but apparently, I was wrong.
To set the records straight, Seattle saying I fired Tacoma after becoming unsatisfied with them is untrue. Tacoma transferred us to Seattle when they were unable to bring Samuel out of his hydrocephalus coma. Seattle saying I never canceled the anoplasty there is also untrue. I also never left there AMA though I threatened it on several occasions due to the communication breakdown between staff and the obviousness that they were not going to help Samuel. Seattle Children's IS fired. After being at OHSU under their surgical team, Seattle Children's should take a lesson. I will never return to Seattle for any General Surgery needs because the staff in OR were so great. Seattle was not able to recognize the fact that they did not help Samuel and therein lies the problem. I am thankful, however, for this situation leading me to find Dr. Silen and his team. We now have a reliable place to get help should we need it again. Dr. Healey states that we have not listened out our Oncologists recommendations which is again, untrue and interestingly enough, most of the lies came out of his mouth. Samuel has had three oncologists to date. Two in which we trust, and one we don't. I got the impression from you that this surgery was a waste of your time if we chose not to continue conventional cancer treatment. Your naivety about Oncology and what it has to offer Samuel has minimized our tragedy and deeply hurt my feelings. Of all the people I would have expected condemnation from on this, I did not expect it from you.
After Samuel's extreme amount of complications and surgeries, we had some doubts as to whether or not he could continue chemotherapy at all. We were concerned about our overall prognosis already being off the protocol six months. We contacted many Oncologists for opinions and were willing to move to New York MSKCC if the top ALL expert there, Peter Steinherz would take us on. Our hope in sending him our records and having our Onc at the time talk with him, was that he would have heard of these complications before and be able to either take us on or offer some help to our current Onc. This was his response. "You can't just pick up and move with four kids, so you need to work with your local oncologist as best as you can. Your son's problems are very rare and your physician is steering you through uncharted waters." He ended his call with our Onc saying "Good luck." It was absolutely devastating. The top Onc did not want us. I realize why...now. We then got several more opinions from an ombudsman service regarding protocols and where the best place for Samuel to receive further care and everyone agreed that it did not benefit us to move anywhere else for treatment as ALL treatment is the same everywhere. They also agreed that Samuel may not be able to tolerate the protocol as it was. Here are just some quotes we received.
The 1961 protocol may be one of the best but that does not mean that this child will be able to tolerate it. The art of oncology means taking what the individual patient's body will allow you to get away with and knowing when the risks outweigh the benefits.
There are many individuals who are very capable of delivering the needed care.
Ultimately the parents have to have a moderate amount of confidence in their child's physician and the physician has to recognize when help may be needed. I rarely recommend that families move from their support systems unless there is a treatment that is available only in one place.
There are too many variables to speculate on a prognosis. I would concentrate on giving this child the best care that he could tolerate for a durable remission.
Every patient is "unique." Some (like Sam) are more complicated than others. Complicated does not correlate with prognosis.
We worked initially with Dr. L in Tacoma, then transferred to Doug Hawkins, at Seattle Children's and Samuel got as much of the 1961 protocol there as he could tolerate. It was not easy and resulted in further complications of the gut. Dr. Hawkins was a caring compassionate Onc who proved himself worthy of trust from the day he met us. He knows we are done with treatment and he understands why. He was there and had to pick up the pieces of an induction month gone very bad in 7/2004. We transferred our care back to Tacoma, to Robert Irwin last December 2005, when it became evident that Samuel was never going to poop less than 10-20 times a day and a 1-2 hour drive each direction was not feasible. The staff in Tacoma know us very well as they were there when all of this tragedy began. Dr. Irwin is a compassionate caring man who agreed to take us on and find better tolerated treatments for Samuel as well as continues to pursue non-toxic clinical trials. He supports our decisions 100&.
In February, it became obvious that even one dose of chemo was like a kick in the gut that took two weeks to overcome. If Samuel were in treatment today, he would be in Long Term Maintenance. The drugs used for this are repeated on a monthly basis. The first drug, Vincristine, is given IV once a month. This drug causes Samuel gut to completely stop working for a period of days and takes two weeks to recover from. It also causes severe abdominal pain in which he just screams for days. This drug has not been used since 12/04 because we and Dr. Hawkins determined the GI toxicity too severe. The next drugs which are given five days a month are steriods. Dr. Steinherz linked steroids to GI toxicity and the cause of his typhlitis but also to his hydrocephalus. This drug has not been given since induction for this reason as Dr. Hawkins agreed with Dr. Steinherz. The next drug, given weekly, is Methotrexate. This drug caused two weeks of diarrhea. And the last drug, given daily, is 6-MP, which also caused diarrhea. Last, but not least, IT chemo is also used once monthly. Either Methotrexate or ARA-C. Since Samuel is shunted, this medicine while injected into his spine, is then dumped out his shunt back into his bloodstream reducing it's effectiveness. Once in the bloodstream, they continue to reek havoc on Samuel's GI tract. All of these drugs keep the immune system depressed thereby limiting Samuel's ability to heal. We have tried half doses and even quarter doses of these drugs and still have GI toxicity. The protocol is not considered effective if the drugs cannot be given in combination so it is useless to do just one thing. All of these drugs together mean no quality of life for Samuel. One of these drugs means no quality of life at this point. There is not one medication left in this protocol which is considered well-tolerated for Samuel. We and our Oncology team decided that Samuel's body cannot take any more. Normally kids in the phase tolerate it well with literally no side effects. Everything attacks Samuel's gut. I think you saw this for yourself.
You do not simply "walk away" from your Oncologist with pediatric cancer. A lot of things have to happen, bad things. A lot of trial and error, and in Samuel's case, torture. It took months to make the agonizing decision of stopping everything and it was not taken lightly. We are clear in our decision as is our PCP and Onc. I owe Samuel quality of life and nothing less. He IS receiving cancer treatment, just not conventional. And whether you subscribe to it or not, he remains in remission to date despite all the treatment delays initially and being off all major treatment for now over a year and a half. With each passing day of remission comes a better overall prognosis. I owe Samuel the right to body integrity, at least what is left of it. If Samuel should relapse and die, I want to look back and know that I did not make every day miserable with chemotherapy that just wreaked havoc on his gut. I want to look back and know we gave him the best quality of life we could. He deserves a life. Finding you was a large part of that. Thank you for helping Samuel. It was not a waste.
I am sure from the outside looking in, most will never understand our choice and I will have to deal with condemnation for the rest of our lives. I am also certain that I would have no problem finding an Oncologist who would be happy to put Samuel back onto a protocol which would make all of his days torture with a gut tied in knots probably resulting in more loss of it. A lot of Oncologists we have met seem to have a different idea of quality of life than I. I am not a selfish enough parent to put my child through any more chemotherapy to appease anyone. We have no guarantee of cure, but instead guarantee of misery. I cannot and will not do that to him. As our Onc agrees, it is NOT okay to fix the problem just to make it worse again. I would never forgive myself if Samuel lost more of his gut, or another organ. Samuel has spent every day since April 21, 2004, in pain. There has not been one pain free day and only a handful of days that I consider good. I now understand what Dr. Steinherz meant when he said stay where you are and work "as best you can" with a local Oncologist. I imagine most of those Oncologists did not think he would live that long given the complications and treatment delays. . Dr. Hawkins has told me several times how amazed he has been all this time that Samuel remains in remission. It is just unheard of. It all is. Obviously, you just have to live the nightmare to understand what we have been through.
Walk a mile in my shoes, if you will. While you might know what it is like to have a surgeon taking care of your child, you do not know what it is like to be there for failed after failed attempts to put his body together again knowing that the cause of it all, chemotherapy and the threat of relapse was still before you. You do not know what it is like to have your child diagnosed with cancer and then watch as every conventional treatment destroys his body. You do not know what it is like to have your child beg you to help him and be helpless in taking the toll of toxicity away. You do not know what it is like to have your child tell you he wishes he could die because the pain is so great and never goes away. You do not know what it is like to be lied about and condemned by people you have trusted for making a choice that most MD's do not agree with. Maybe you do know what it is like to have someone walk all over your feelings because they did not take the time to find out the whole story and as a result, made inaccurate hurtful assumptions about you. Need I go on? Samuel did not get cancer from a chemotherapy deficiency. Maybe once researchers realize that, they will be closer to a cure. If you should have any further questions or concerns about Samuel's cancer care, I welcome you to contact either Dr. Irwin (253) 403-3482 or Dr. Hawkins (206) 987-2106.
Samuel is a happy well-adjusted lovely boy who steals your heart with his smile and charisma. I love all my children dearly but the sun rises and sets on this child. He was looking forward to meeting you and even knew your name which is a step up from "the butt doctor" which is how he referred to Healey. I included his picture taken on the sky bridge the day before you operated on him so you can see what he looks like awake and happy. He asked about you all that night and the day of surgery but I guess you were too busy to meet him. I regret that most.
I thank you for your compassion and willingness to help Samuel. That day will never be forgotten. Neither will the compassion of the OHSU staff in facilitating it.
Sincerely,
Jen Backus
Mother to Samuel
12/7/06
We are safely home.
12/6/06
Change of plan. Samuel started pooping yesterday night. All bets are now off. The NPO status has rapidly changed from clears to food. He can now eat whatever he wants. He doesn't know it yet though. He is sleeping currently.
Today I have an oncology RN which has been a treat simply because they are used to parents who do everything and don't need RN's to stand around doing it all or policing them either We had our RN from the night before again last night so finally some continuity of care. Samuel and I each slept 8 hours last night so today feels like a new day instead of the same day for three days in a row. He woke up pretty happy and is now off all narcotics and most of the pain meds. Thank God, thank you all for your prayers. Things have certainly turned around.
Today, he has played in the playroom for an hour and we took a walk and a shower. Currently he is passed out.
They pulled the foley today as well as took him off all monitors.
Last night shortly after I posted the update, he told me he had to poop. I was under the impression that he wasn't supposed to be pooping so I asked him If he was sure. Well, he was and he did. Then he pooped again later and has gone several times today. The resident who has warmed up nicely told us he could have popsicles after seeing the large puddle on the floor in the bathroom and Samuel sitting on the pot. There is no modesty here. So, Samuel was pretty happy. He woke up today saying he wanted to go home AND eat. Later they ordered him clears and so two trays have arrived for him and he has actually tried all the food. The NP just came in to ask about us wanting to transfer to Tacoma and I told her that it seemed everything is moving ahead of schedule now and if Samuel was no longer NPO, it just did not matter. Obviously we will be leaving sooner than seven days. By the way, they forgot to order TPN so it was never started last night. Good thing now. I told the NP that from the day Samuel was born, he was nick named Pooper. So it figures that even if you don't feed him, he still poops. She asked me if he wants to eat, if I want him to eat. I of course said yes. So she okayed him to eat whatever he wants and had food sent here immediately. I also just ordered him dinner which was more appropriate than what they sent. If all goes well tonight, they will release us tomorrow. Can we all say YEAH to that! I don't anticipate any problems as what we are dealing with now is nothing compared to what we have dealt with in the past. As you might imagine, we are all thrilled at the news. It will be so much easier to tell how life with the new butt will be at home.
I have been impressed with the Surgery Team here as far as how often they come around. You see them several times a day, not just once early in the morning and they are gone never to be heard from again. I knew coming in that the pain issues would plague us as well as not having staff who knew us.
Bottom line, hospital life is NOT for me. We cannot wait to go home and by the sound of home, they cannot wait for us to get home. Anna asks for us each day and I know she cannot wait to get her favorite playmate back. I cannot wait to see them. Some funny things have happened while we have been here. On the surgery day, when I had the "experience" with Levitt, Mark had a headache from mid afternoon to later in the eve. So about the time it happened to about the time I was getting it out of my system. I should have had that headache especially based on the last few months of dealing with the crap and stress headaches. Also, about 6:30am yesterday, Mark woke up hearing a hospital door slam. Of course he was dreaming, but that was about the time the stupid resident was in here annoying me with her shrugging shoulders and lack of knowledge. Mark and I have always shared thoughts and seemed to communicate without communicating. We always know because one of us will say exactly what the other is thinking and sometimes we can call each other, say Mark is outside and I am inside, I will think about calling him in and he shows up wanting to know what I want. Interesting, eh? I haven't been eating well, he hasn't been eating well. He has no excuse since he is home but I guess it is just the empty nest feeling on his part. My life and my loves are at home, waiting on Samuel and I to complete the circle and we cannot wait to rejoin them and go about the holiday celebration.
On the homefront, the dryer man showed up but did not have the right parts. He did not even take the dryer apart. He just ordered one of everything and now is coming back NEXT week to install it all. Oh, I am glad I am not paying for this. So now we have yet another week with no dryer. I guess I should do all this poop laundry here. I am sure they would ALL appreciate that.
Last night I was feeling like Samuel is still going to be continent based on him being able to hold the watery poop long enough for two RN's to arrive and help carry everything to the pot. Today, he has had a few accidents but then manages to hold the bulk of it til he gets to the pot. Being hooked up to IV's it is not as easy to get there fast. I think he is going to be fine. His last antibiotic dose is at 3pm and I cannot wait for it to be done as I suspect that it is reeking havoc on his gut causing the most awful diarrhea and mucus. It stained their tile.
I am mostly over the Levitt thing, not just that he did not show up, but what was said. I will share that later when I am home on my own computer. The lap top is not easy for a blind person to use, hence the typos. Either I can read it and not type, or I can type and not see it. Perfect. Much easier at home.
The attending surgeon we have had who helped coordinate this has really impressed me thus far and I think any further surgical needs in the general area Samuel might need, we will come to him. I was thinking last night that I would just introduce HIM as the butt doctor and tell Samuel that he fixed his butt so that he will at least understand that he has a doctor and we are not just here dealing with the same exact thing we always do, a sore butt which no one knows how to fix. I don't know if he will come round before we leave at this point though. We shall see. At least that would give him some closure. He still will not completely understand but at least he will know someone took care of him while he was here.
I have read and heard so many people rave that Levitt is their child's favorite doctor and am sad that I did not get to experience this first hand if even for the five minutes it would have lasted. But in light of what was said, I wonder if he intentionally did not meet Samuel awake because he did not want to meet a child he thinks may relapse and die. Spare himself from caring too much. Samuel is a miracle and if he did not want to experience this child in all his glory, HIS loss. We are fine. I hope we are done with it all and never have to revisit this part of our lives again. But if we do, it will be revisited here in Portland, NOT Ohio.
Thank you for your love and support. We appreciate you all so much.
12/5/06PM
They just brought me a big pile of e-mails from you all. Thank you! Things continue to be frustrating here.
It has taken all day, and we have been up since 3am, to get ahead of Samuel' pain. I asked and asked the Surgery team to make a plan last night, and since they did not, the resident had the pleasure of being woke up at 3am to make a choice then. I asked for certain amount of morphine, and got it, but it was too late ad now we have spent the day chasing pain instead of managing it.
Praise the Lord, I had a good RN last night who should be back tonight and a good one for the day today. They gave me a sheet to write questions for the doctors on so I made them a HUGE list. Number one, we want to transfer after surgical pain is minimal. Haven't got an answer on that one. A social worker was here today so I asked her to pursue this as well explaining our situation and reasons why I want to move back. Hopefully I will know more tomorrow.
I had a rather heated conversation this morning with a resident who looked over my questions and gave me curt yes or no answers with no explanation. When I asked for explanations, she shrugged her shoulders, several times. I told her that if she did not know, perhaps she needed to send in someone with a little more knowledge.
One of the biggest problems, now resolved, was the NPO status. Nothing by mouth for seven days. The first thing Samuel asked for was water. The breathing tube was not kind to him this time and his voice is scratchy and his lungs are a bit junky. I asked the RN in recovery what would happen if he had an "accidental: drink and she said nothing. So he had one but not before our RN saw and reported to the Surgery team who was five minutes in hot pursuit. They were adamant about it last night I wrote on my list that he should be able to at least have ice chips. The morning resident said no and this was one of the things I questioned her on and received the shrugged shoulder answer. I told her that not allowing him to rinse and moisten his mouth was cruel. Made no difference to her.
Later the resident who we woke at 3am was in and I went over the list with him and suddenly he was more accommodating. He was the one who got after me for this last night, today suddenly it is fine. So Samuel can have sips and ice chips. But of course, he feels so defeated today that he doesn't want anything. He hasn't asked to eat or drink today at all. Some of his comments were that "it's all my fault' and "I just want to die." I at least corrected him to say that it is all the doctor's fault.
Yesterday was miserable. NPO all day and he was asking to eat and drink. Post surgery was miserable with him begging to drink and then vomiting several times. Not the sip of water but bile instead. Luckily that passed. I was called to recovery to console him again before returning to our room. I guess he was so angry when he woke up that they gave him Versed. Versed is the drug we have requested they NOT use because it makes him so angry and unreasonable. So the RN was not happy when I told her that. I never mentioned it because they usually premedicate with it, not post. So I never even gave it a thought. It is now listed as an allergy for Samuel. So, that was not impressive at all!
Today has been miserable, as I mentioned already. I think we might be just now into a good place. Samuel is coloring and sitting but ultra sensitive to everything and "acts" like he has been given versed even though he hasn't. I think it is sleep deprivation and starvation. TPN is supposed to arrive tonight and hopefully this takes the edge off. That and sleep.
All the surgeons here were apparently under the impression that this surgery is minimally painful and a snap to recover from. I asked that the Pain team come right away this morning. They did and came up with a plan, which unfortunately was not implemented til tonight at about 5pm. I talked to them at 10am. I guess they just write a plan and submit it to the surgeons and the surgeons have to approve it. FRUSTRATING! In Seattle, when the Pain team comes, they take over pain management and you don't have to wait all day for it. There are many pros and cons to each of the hospitals we have been at, that is for sure. I hope we are on top of this and can sleep tonight. I have had about three hours sleep in the last 36 hours and it is NOT enough to stay sane.
The surgery....big long sigh. The surgery supposedly went well. Samuel's mucus membranes are still scarred and damaged from chemo. His rectum is short and he has no colon. Yesterday I was told that unless we can be sure his sphincter is okay, continence may be a lifelong issue. I reminded them that he WAS continent before the surgery and also after the largest dilation. They thought that the stricture may have been part of the reason why this was so. Time will tell. We will also have to pass a dilator every day for six months to be certain that it is not getting smaller. It should pass easily and should not hurt. Then taper to every other day and so on.
There were many disappointments yesterday. It was NOT the dream come true I had in mind. Dr. Levitt never came to see us before the actual surgery time. I met him two minutes before. They had to pull him out of his lecture because everyone was ready and waiting and he was not there. To my dismay and before I even knew what was happening, the anesthesiologist put Samuel under BEFORE Dr. Levitt even met him. Dr. Levitt did surgery on a dead person as far as I am concerned. He never saw him post op to meet him either and I have heard there was plenty of opportunity. He came here to do Samuel's surgery and the lecture and he was gone. I would have thought that if you came all the way, you would have wanted to "meet" the patient, but I guess that was just not a priority. He came here to do a job and I guess Samuel was just another chart. I am absolutely and completely disappointed. What I am most upset about is that Samuel came here to see the NEW butt doctor and get his butt fixed and he never even met him and will never know who fixed his butt. He doesn't understand. He is still waiting for someone to fix his butt. He doesn't even get that it is done. And there is more but I still cannot believe it and cannot even record it. I am waiting to see if it gets resolved before going into details. I have resolved the issue with the Attending here and for him it was NOT an issue but he understood my concerns and was going to speak with Levitt about it. No words will ever explain why it was not a priority to meet Samuel. Levitt is a person with an outstanding reputation with families and is highly raved about, so I just do not get it. He came all this way to do the surgery and for that I will always be grateful but I will never understand what took place here yesterday. I feel sick about it. Maybe it is just lack of sleep and a child who has been inconsolable all day who thinks this is all his fault and wants to die. Maybe it is just that.
12/5/06am
3am hit Samuel with pain fast and hard. It has been a miserable morning. Now they are concerned he is not peeing enough, even with the Foley in place. Apparently pain control is going to be a major problem here since he has now had 2mg of morphine and it is barely touching it. Please continue to pray.
12/4/06 11pm
Surgery is done and it has been a long day...getting longer as I write. Samuel is doing great post-op after a few little speed bumps at first. His anus is now a 17 and I have the pictures to prove it. The surgery went well and the plan tonight is that he be NPO for seven days. Seven days on TPN, and so far he is feeling amazingly well after surgery with normal heart rate and everything. He is sitting. Of course, he stuck his hand into his butt an noticed the sutures right off the bat. He is not as impressed with the Foley either. Overall, the day has been long with several disappointments that I intend to get to the bottom of, excuse the pun, soon. I think I am going to insist we be transferred to Tacoma to finish up TPN if after the next couple days things are going well. I don't think I can do another seven days here after today. It has become very obvious that we need to be cared for by people who know us and be reunited with our family. At least in Tacoma, my family can visit everyday and the staff know Samuel very well. It is just too hard to be stranded here with no continuity of care and no advocates to rely on.
Thank you for your prayers! Special thanks to Miranda for your surprise visit and special treats. I enjoyed meeting you. It was truly the highlight of my day.
12/4/06 6:45am
Well, we have been up since 4am. I am not a morning person EXCEPT when at the hospital. I have already been down to Starbucks for coffee which will equal breakfast. Samuel cannot eat for the day. He has been NPO since 5am. Now they are saying surgery is not until 1:30pm. UGH. This is going to be a long day. Surgery team has been in but they seem to not know much. Haven't seen or heard if Dr. Levitt has even made it. Anesthesia came through and we discussed pain management. They are going to give him a shot localized into his backside somewhere which will give him 24 hours of numbness. And some localized morphine as well. I alerted everyone to his previous morphine addiction and tolerance and the Pain team will come by later as well to be sure we are okay. I also requested he come back with a Foley so I don't have to worry about that post op He can just come back and rest for the next 24 hours.
He is currently hooked up to IV fluids but I am hoping we can unhook and go play to pass the time here this morning. We like to go exploring and this hospital has some really cool things to see. We trekked the skybridge last night Someone told me is a a quarter mile long, but after walking it, I think it might be a quarter mile if you walk it back and forth. Did not seem that long to me.
Gut cleanout went fairly well. It is not pleasant, but the process did not break out his skin or make him scream. That waited for this morning. Apparently here, after cleanout, they like to push TONS of antibiotics afterwards. So the poop I saw today looks like yellow mucus, and it burns.
Samuel got pretty tired after our walk last night and ended up crying himself to sleep. He is hungry and wants to go home. We have talked about him getting his butt mixed and he is concerned about where I will be when he is in surgery and if I will be waiting for him. As you might expect, we just want to get it overwith. We appreciate your love and prayers so much. More later........
12/3/06
Greetings from Portland. We had an uneventful drive here and Mark is safely back home. Thank the Lord! Samuel is well into his GI clean out and it is going well so far. Not too terrible....yet. You see from the pictures our little room. Key word OUR. Not shared. Small, but ours. It is only 5:30pm but time sure seems to be passing slowly!
The IV therapist LOVED Samuel and told everyone on her team about how cute he is.
His labs are great. Haven't seen them in two months..obviously we do not worry much about them these days.
WBC 7.4
HCT 34.3
PLT 389k
I haven't seen Dr. Levitt as of yet. The plan is gut cleanout, clears til midnight and then IV fluids until surgery. Just a waiting game. Samuel is trying out al of the popsicles available currently.
12/2/06
It is 8pm but feels like 10pm. I should go to bed. Kaysha, Daniel and Anna are at Mark's parents for the night. I am just about done packing, just a few more additions in the morning. I am trying to be positive about this upcoming stay, but to be honest, it is proving rather difficult. Saying goodbye to my kids for an undetermined amount of time sucks. Leaving for an undetermined amount of time sucks. At least previously, the kids and Mark could come visit us, but this time we will be too far away. Being stranded in a hospital sucks. Knowing Mark has to drive us all the way there, just to turn around and come home alone sucks. The whole thing sucks. I almost feel like I am going to jail or something. Really! Had this last year of horrible events NOT happened, I am sure I would feel quite differently about this. But it did, and the wounds are still fresh. Even though this is a different hospital, and different doctors, etc, I just cannot get past what we have endured. It is hard to imagine the amount of people waiting with baited breath wondering if Samuel will have the surgery, hoping he does, not because it will help Samuel, but because it will mean they don't have to work on fighting us anymore. Mark and I talked tonight and agree that the only thing that would be worse than going to Portland would be if I had to go to Cincinnati. Then, I would really feel sick. I only feel unhappy currently, not to the sick feeling yet. I will feel that way tomorrow when I say goodbye to Mark knowing he has a three hour drive home and we do not know when we will be reunited.
The nice thing about the last two plus years is that we have been able to be together for most of the hard stuff. Sending your kid off to have his anus sliced open, rectal skin pulled through and sutured back on is quite a lot to fathom while you are waiting alone the two hours it takes to get through. Then you have to wait another two hours to even see your kid after. At each of our previous hospitals, we have known people. My RN's were my friends and certain social workers were also. It is just such a difficult thing to send your kid off alone and then be alone to wait. Mark could stay for the surgery, but we simply cannot afford it. and in the grand scheme of logic, it just does not make sense. Plus we cannot leave the kids with his parents for that long. None of this has every been easy. Certainly I have said goodbye to Samuel and sent him off to surgery with Anna in tow. That was not easy either. Taking care of two babies was just one of those nightmares I will never understand how we got through without going completely crazy. I am glad Samuel does not have to ponder this. He thinks he is going to see the NEW butt doctor, and he is only going to look and not touch, then magically fix his butt and then we come home. He is so excited and thinks this is going to be loads of fun. I guess I should be happy that he feels no contempt toward hospitals, doctors, and caregivers. Wish I could say the same and feel the same.
They are going to think we are crazy when they see our baggage. It has been over a year since I planned a stay more than a few days inpatient, but I have certainly learned the keys to survival. Clean clothes. Warm clothes and your own pillows and blankets. I even remembered to pack toilet paper. Theirs is so rough and scratchy that even my butt got sore. Imagine how poor Samuel will feel!
I did find out the surgery is planned for Monday at 1pm. Apparently Dr. Levitt is giving a lecture beforehand. I am sure this is great for all the doctors attending the surgery, but not so great for Samuel who has grown quite accustomed to eating again. He will be doing gut clean out tomorrow and then probably on clears or TPN after that. Yes, I wish I was coming home tomorrow, not leaving!
We appreciate those who have sent well wishes and prayers today. Thank you! Please pray for our safety, for Samuel as he endures surgery #20+, I lost count. Pray for favor for us, and that this is a good experience. One which helps wash away the bad ones. Pray for my kids as they spend the week with Mark. Anna will really miss us for sure.
Until tomorrow.......much love!
11/29/06
Samuel will be admitted to OHSU Sunday at 9am. We will leave early Sunday: Mark, I and Samuel only. Mark will stay long enough for me to orient myself with the hospital and where everything is, and then head back Sunday afternoon. It will be a long day for everyone but there just is no other way around it. Kaysha, Daniel and Anna will stay at Mark's parents until Mark arrives back which will make it easier for us to do what we need to do when we arrive. Surgery Monday.
I am glad I dumped my worries into the last journal because God has really changed things here. Samuel is doing great! We think that possibly the scar tissue stiffened up for a little while and has softened again because he can eat, poop and just do whatever he pleases. He is happy. I would count good days again, but still trying not to jinx this.
So, you will never guess who called today? Medicaid. I guess he wanted to know if his attorneys should get busy or not. Well, he did not say that, but he just wanted to know if we were all set and if there was anything he could do. So, Thompson, if you are reading, I would say you have done enough. With friends like you, who needs enemies. No, I did not call him back. He can just wonder. I am sure there will be plenty of phone calls to OHSU come Monday. All these "helpful" people wanting to know if they have to work.
I figured Dr. Levitt might be wondering how Samuel is since he hasn't heard from me in over a month now and certainly he has received the attorney's request for him to testify should a hearing be needed. So I sent him a quick note today letting him know all is well and we would be there bright and early Sunday for "bowel prep." And Samuel thinks this is going to be fun. Dr. Levitt says he is looking forward to his trip and meeting us. I have been praying for favor here especially in light of how awful our last few admits have been in Seattle. It still seems surreal that this day is finally almost here. We have only been waiting since May you know.
Samuel sat up with the kids to do his first day of school, which basically consisted of handwriting. He wrote and Kaysha and Daniel were just mesmerized. You would think they never saw anyone write before. And as with all of Samuel's firsts, picture taking was in order. We did learn something. He is RIGHT handed. Not left. We have thought all along he was a lefty. Kaysha and Daniel are lefties. Mark is a lefty. Well, I guess it is even now because Samuel, Anna and I are all right handed. That means teaching them to write will be much easier FOR ME. Mark had to help Kaysha and Daniel. So, Samuel did really well and I expected nothing and was just fiddling around but now he wants to get his book out with Kaysha and Daniel every day. He asks. So we might take them along to Oregon if he is up to writing.
The weather here is supposed to improve this weekend. Sun and warmer. Currently we have snow and below freezing temps. The hill which saved us from the flooding is now treacherous due to being solid ice. So we have been playing it pretty low key. The kids are enjoying the snow. I don't care currently as I am just too busy getting things done before leaving. I will spend the next few days packing and deciding what creature comforts we need to take, etc. I have done a great job keeping myself buried in work over the last few days that I have been able to keep my mind off the surgery. I swear I do this everytime something big is planned. So it is a relief tonight knowing most everything is done and it is just a waiting game. We continue to pray for good weather for traveling for all parities, favor while there and of course for this surgery to be the end of this miserable era in Samuel's life. A new beginning. Maybe someday we could hope for a life again?
If you have any spare prayers to offer, can you pray for these two boys? Donovan.
He has relapsed leukemia again. This is the fifth time! This is just devastating news after everything this precious child and family has been through. Ellis just received a new heart and his body is now rejecting it. His doctors are trying desperately to save his life. Little boys in the two year old range just steal my heart. Both of these boys need miracle touches from God. These children remind us just how fragile life is, one moment can change your life forever. Cherish everything you have today because those memories may just be the ones which carry you through rough unfathomable times. Much love!
11/24/06
Thankful: feeling or showing appreciation, grateful.
Since Samuel's diagnosis, each holiday, birthday or anniversary of whatever, I look back to the previous year, and the one before that, and revisit life back then. Two years ago, we had only just figured out that Samuel's anus and rectum collapsed. Only because it burst open after what seemed like three days of childbearing labor for Samuel. The torture of that was so unbelievable, so awful, and yet, there was still more to come, worse to follow. We had no clue. We thought that his anus opening up was a good thing and the end of that torture. Little did we know, it was only the beginning. Last year, Samuel was still recovering from his ileostomy take down and while Thanksgiving seemed magical, life was anything but. And even then, his anus was closing down...only we did not know it because we believed it was fixed due to being used. Now some two years later, it is still NOT fixed and still a nightmare to live with. All of this makes me wonder what we are going to look back upon next year and say we had not a clue. I am thankful that this era of Samuel's misery will be ending soon....and I pray that is so and this surgery does not open up a whole other can of worms. I am thankful for Dr. Levitt and his willingness to come here to help Samuel. I pray he is our miracle that ends the suffering for good. I pray this also ends the nightmare we dealt with with Medicaid, hospital bureaucrats and everyone else who is only in it for the money. I pray that someday, that bad taste in my mouth will be a memory. I would hope that someday the good things will outweigh the bad ones but for now, my uneasiness with hospitals, MD's and bureaucrats just continues. Guilty until proven otherwise is how I feel about them currently. It is s sick thought to think that if Samuel is unable to have this surgery done on December 4th, we will have to fight for the right to have it done in Ohio and no one will care about anything other than the revenue from this surgery leaving the state. I will be thankful when this is all behind us. This is one chapter I want to shut the book on and throw away the key. I actually lost all the documents from the attorney's office in regard to Medicaid's decision making process. Other than the notes I scanned, the package has vanished! I don't know if I subconsciously threw it away or just misplaced it.
This upcoming surgery is quality of life for Samuel. It makes or breaks it. Probably the most important surgery to date only overshadowed by his VA shunt, you know the one which actually worked? The VA shunt that worked WAS life. That gave him back his life. But if that life was given back only to be riddled with pain and suffering, what good was it? This surgery means everything.
The last few days, if not week or so has been filled with uncertainty more than thankfulness. Suddenly, everything seems like it is up in the air. Every funny cough or sneeze grabs my attention and I wonder if it is something....or nothing. Samuel continues to poop, which is good, but the consistency of it is not right, which is bad. His skin is still red, raw and irritated and he is still begging to see the NEW butt doctor. He is begging for someone to fix his butt. I am thankful that this is only a bit over a week away, not three months away. It was so hard three months ago to explain to a 4.5 year old that he had to wait THREE months when all he did was scream and suffer and starve. I am thankful that this situation is much more livable, yet it is still not wonderful. I still worry, check poop and wipe a sore butt several times daily. Worry more than several times daily. I check what food he ate, logging it in my mind and estimate the time it should take to exit should it do so correctly. And then think about the steps I need to take should it NOT exit. Things are okay, not ideal and I am certainly NOT counting these as good days. Yet, I am thankful that he is not spending each of these days in torment. Things could certainly be worse.
Thanksgiving was nice, not magical, but overshadowed by an uneasy feeling of the uncertain future. I set a place for Samuel at our table this year. I did not bother last year, or the year before. He sat up, he did not eat, which was expected. But he at least felt like he was a part of it. He did participate in the Friday after Thanksgiving French Toast and ate the whole piece I think for the first time ever. So that was good and I am thankful that sitting up to the table this year is not as foreign a concept as it was last year for Samuel. Two years ago, the only things he would put into his mouth were chips and crackers so we have come a long way. Still have a ways to go.
We spent last Thanksgiving fixing the oven which had an element burn out and ended up swapping the top good one to the bottom since no one was open to get a replacement. We spent this Thanksgiving fixing the venting from the dryer to the outside. Unfortunately, the fix it man came, found NOTHING wrong with it. Well, I beg to differ. He could not get it to stop working while he was here or get an error code. But of course, yesterday, we got the error code for it. Only now they cannot come back out until December 6th. And the dryer kind of works so you can partially dry things and occasionally completely dry things and sometimes it just refuses to work completely. But on the flip side of this annoyance, apparently I DID buy a service contract and it is covered until late next year so we won't be out the repair money. So yeah to me for buying that! It just paid for itself as we bought the contract at a time when we HAD money, as opposed to now when fixing it means not paying some bill. Not having a reliable dryer, however, for another almost two weeks, is very frustrating and just seems par for the course. So I am thankful that it kind of works; we turn it on and pray.
The weather here is predicting snow and cold icy conditions. Just more uncertainty.
We are at a time when things need to be coming together, at a time we have waited so long for and things just seem to be scattered. We have had some real reality check conversations over the last two days. Mainly about how we are going to balance the next few months. We are a close family and it is difficult for us to be away from each other. It is something we have to do for Samuel, but we don't have to like it. It is not going to be easy and it is not going to be fun. We are not even kidding ourselves. And with Christmas coming so soon now, the timing of this surgery both financially and time wise is just another thing plaguing my thoughts as well as Mark's. I was planning to do the tree this weekend since we will be gone next, and possibly the next as well. But I cannot even fathom doing the tree. It doesn't feel like Christmas. The commercials are making me feel ill. I cannot put up a tree and then leave with all of this uncertainty on my mind. I want to put the tree up when we arrive home, with Samuel doing well. I want to celebrate then. I don't want to celebrate now, it feels like jinxing our situation I guess. We had a family chat about Christmas and what it is going to mean to us this year. We felt the kids needed to be warned ahead of time about the uncertainty of what is to come. They understand, but it doesn't make things much easier. I am thankful that they understand the bigger picture and that sometimes you just have to make sacrifices you don't like for the good of the family. The hope of next year being significantly better than any of the few previous years is sustaining us.
Oregon did not call me back this week with an arrival date so that is still up in the air. Obviously, I will be calling them Monday. The uncertainty of what we will have to deal with there is another thing stealing my thoughts. It is nice to know people and helps a lot while inpatient. We know no one and so I pray we get good RN's from the beginning since we know all too well that they can make or break your visit. I pray people listen to our concerns, are compassionate and of course that we can go home asap.
