8/9/06 Second Update
Samuel lost two pounds today...in poop. Real poop. Words cannot even express how happy we ALL are. I have been quite busy today helping Samuel get on and off the toilet since he has spent the day pooping...make up poop for weeks of not being able to go. He is eating and he is pretty happy. His butt still hurts but he is pooping on his own. I have more to tell you, but I am quite tired so am going to bed. Just thought you would like to know that FINALLY after four weeks, he has some relief. No news from the Ins that is significant. Thanks for checking in.
8/9/06
More bad news. Where do I start? Well, the doc in Cincy finally personally spoke with the surgeon at Children's and told me yesterday that " I think 4 - 6 weeks of
healing prior to anoplasty would be good timing. He needs to keep
stooling from now to then to stay out of trouble. We need to keep him from
getting impacted. If the skin around the anus is OK, and the "crack"
from the dilation is healed, that is the ideal time to do the anoplasty.
I predict we don't need to dilate after the anoplasty even in the
operating room. To keep him going there are two options. (1) laxatives - which will
give him mushy stool and potentially diaper rash or (2) a daily enema
with a foley."
What that means in English is that we have to wait 4-6 weeks past the last dilation. It was done on 7/20. Apparently the dilation cracks the anus and it has to heal. Also, as we already know, his skin has to be perfectly healed for this. So I guess it is a good thing we did not go to Cincy because as I predicted yesterday, the anoplasty could not have been done. Given this added list of problems we have now, that only makes things worse as far as healing times, etc. This news was devastating as we already feel completely alone in handling this already.
So, yesterday's x-ray shows the ileus to be resolved and once again, his rectal pouch is full of poop. It can take the colon a few days to a week to fully wake up after an ileus so I hope that is the case and it will start working. At any rate, the duty of keeping him pooping is now left up to us and this is all a waiting game again. We have already tried laxatives and they don't work. I just cannot imagine doing a daily enema with a foley since you can hardly get near him, but if it cleans him out and he doesn't poop on himself at all, he might be okay with it after the initial fit. I am beginning to wonder what is going on with his rectal pouch, if it just refuses to work, only works part of the time, or is just in shock from all of this period. That is a question for Cincy and as I found out yesterday, we just need to be there, face to face to talk this all out because our case is so complicated that a doctor trying to help us from 2500 miles away can get confused easily. So, I am planning to call the Onc clinic today to discuss with them what things to order for enema and cathing...but have serious doubts about whether or not we can do this at all.
Medicaid is now asking for ALL the records from Children's of Seattle. Getting an authorization could take forever at this rate so I guess it is good we have to wait anyway as waiting on them will be less frustrating knowing we cannot go this soon. I now have the doc who is reviewing this direct fax, personal e-mail and personal phone numbers. He has been very nice thus far so I will hope for the best and if not, then we move asap.
Last, in the line of bad news, Samuel's immune studies are back and his IGG is low. I would have expected them all to be normal, and I think our Onc did too. But this level is the major antibody found in the blood that can enter tissues. It coats germs, helping other cells to seek and destroy them. It is 75% of the bodies cells. So, I need to talk to the Onc today about this too. We don't have a baseline so I don't know if this level is up or down. What I do know is that my instincts were right in not wanting to place him in situations where there are large crowds, or bunches of kids who may be sick. We are very lucky he has not gotten sick at all, at least in a major way such as pneumonia, etc. At any rate, this is disappointing. I am not sure how much diet has influenced this since he has not been on his usual diet for quite some time. I am sure there will be a recheck of this level as time passes.
So, my plan now is to continue pushing for the ins approval and once we have that, trying to see how soon we can go. At least advance notice on a date will get us a better airfare. I just hope we can figure out what is the best way of keeping Samuel pooping and healing in the midst of what feels like his body betraying him once again.
Thank you for your prayers and checking in. Much love.
8/8/06
This morning we know nothing. I will call again this morning to check. Samuel has been up since 4am with diarrhea now and is very sore again. We will be going into the clinic for another x-ray and possibly fluids. Our Onc is gone today and I don't know who is even going to read the film so I might just snap a photo of it before we go. I just don't know what else to do at this point. I talked to Cincy last night and they say we cannot even come in and pay cash for services as it is against the law for a Medicaid patient to do so. This is preposterous! I asked if they were contracted with KY Medicaid if I suddenly relocate and they are. They have two hours of OR time on Thursday but now we are unclear as to if he can even go to surgery with his gut in this condition. So basically, I can do nothing. The Onc in Tacoma today is the one who actually DID something about Samuel's previous ileus. He is the one who took one look and ordered TPN, and no question, we went to the ICU the day after that. So I don't know what will transpire today. I am running out of ideas of things that will possibly speed this up since it is now over a week later and we are still waiting. As Monika says, if you have appendicitis, they will take that seriously, but gut problems....oh well, no big deal. Tell that to Samuel. All he knows is his butt hurts, his tummy hurts, he cries out for help and no one bothers. The people who want to help have their hands tied behind their backs. Mountains, be thou removed.
8/07/06
Quick update.
Samuel is now back to pooping green bile........this is a step backwards again.
I have just talked to the Dr. reviewing our case personally. We spent at least 20-30 minutes on the phone going over the entire history and how things got to this point. He thought this was the most awful thing he has ever heard. I hope that gets us somewhere. He is trying to contact Seattle and I gave him the direct numbers to the right people. Please pray this is okayed today. I don't know how much longer we can hold out, both physically for Samuel and emotionally for us.
Thank you for all your support, prayers, love and donations. Much love.
8/6/06
Things remain the same. Samuel is still having stuff travel through, but I would not call it poop. He still says his tummy hurts, still wants to eat us out of house and home and still complains that his butt hurts.......BUT.............his butt is now almost completely healed on the outside so his ileum is now absorbing acid. He just heals amazingly fast when acid is not in the picture. He is still really hurting when he goes and I don't know if it is just stretching out the anus, or if the inside is still raw and sore, or what. I imagine there are adhesions in there as well and he still sticks his finger up there to pry poop out. What is most disturbing to me is that he WILL remember these days. Days of crying out for help, asking for someone to fix his butt, and spending countless days with no one doing anything. All we are offering is supportive care which doesn't feel supportive at all. I am happy he is slowly making progress now, but obviously we still have a ways to go.
I am planning to call the doctor reviewing this case first thing in the morning to see what still needs to be done. In my mind, it should now be an open and shut book. Our surgeon has released our care and records to Cincy. They should honor that. The only person who has seen Samuel for the last two years referring us to a specialist should be enough. I am thinking they may have asked our Onc to do the follow up and call around because Seattle never responded. Now that they have, I am hoping it is a different story. This person has not been there since last Wednesday so the note from Children's will be new to him.
I am also getting the x-rays from Children's done while we were in the ER and right before we left. I never saw either of them. But I am thinking Samuel might have had the ileus even then and if so, we might see if we will consider taking legal action.
I don't know if we will go in to Tacoma tomorrow or not. At this point, unless things start going backwards again, I don't think we need to. I am hoping this will be approved and I don't have to bug them to do more than they have already. They just don't have the time or resources to get the proper things done in one day like calling another hospital. Especially once they see the list of questions I will comprise for a potential surgeon should one think he is willing. And there is not a whole lot else then can really do for us other than supportive care as well.
I really pray that tomorrow is not yet another day of frustration. I am actually feeling pretty decent today as I actually did sleep last night. Samuel is more comfortable now as well so that helps ease my worry. If he could sit on the airplane, provided we leave, that would be a bonus. Things at least do not feel as urgent when Samuel is improving...yet, we also know how quickly he can go downhill. Thank you for your prayers.
8/5/06
5:30am came very early to a person who isn't getting much sleep anyway. Samuel woke me up because he got cold in his room. A little while after that, he came running down the stairs saying he had to poop. Well, he did, but it wasn't poop. It is still the same funky color texture foul smelling stuff, but today there has been a lot more of it. So that is good news at least, this crap, literally, is moving through. Not at all normal, still undigested and gross, as if all poop is not gross, but undigested clumps that smell fishy is just a whole new realm. It is a real neat trick to feed him chicken stock and have it come out smelling like fish. He seems to feel better as well so I hope that in the next day or so, this stuff coming out of him will turn into poop again. Based on the size of some of the clumps, I think his anus is still okay for now size wise. However, we probably then have two weeks until things go south with it closing up. He is none too thrilled about what is coming out of him either as it is still hurting him and he just does NOT want to poop at all. The thing most frustrating is that I just got him potty trained, and for weeks he has been incontinent which upsets him terribly. He cries and apologizes and just feels terrible. Almost like a puppy who has had an accident on your carpet. And Samuel has had MANY accidents on the carpet. He has spent a lot of time in the tub as of late because that is the only way to clean him well with the least amount of screaming. It kills me to watch his gut problems reduce him to feeling like an animal.
I still feel sick. I am trying to stay positive and say that we WILL go to Cincy in the Name of Jesus. Mark, Kaysha and Daniel went to his family's reunion today. I am home with the "babies." I don't feel all that social anyway so it is just as well. My mind and body feel paralyzed by this just as Samuel's gut is. So we are taking it easy and trying to give our minds a break from all this mess since we can do nothing anyway. I stew, Mark goes on with life. Guess that is what keeps me from going crazy! Well, I told him to leave, I am grumpy. He keeps asking about things we should do over the next day or two and I cannot even decide. Don't ask me anything. I do not know. Can't even think about it. Make a decision, I don't care.
The thing getting me down currently is knowing that we could have been in Cincy right now. Knowing that someone would have found his Ileus and DONE something to help him get relief. Knowing that all we would have to do is get through another day and he could get fixed and stop this from continuing. I could feel like someone KNOWS what is going on and is not guessing, or asking ME what I want to do. Maybe I could trust them, instead of second guessing them. That would be new.
I mean, the docs asking me what I want to do here is fine because if I don't like their ideas, I just won't do them. Tacoma has offered two medicines for Samuel I have rejected. Unfortunately, Tacoma has even fewer resources than Seattle and when it comes to Samuel's gut problems, this is WAY OVER THEIR HEAD. And there is NO WAY any of their surgeons are getting near him with a ten foot pole. They have done enough.... Every surgery done there had to be revised at Children's. And I mean EVERY surgery. So, in an effort to spare Samuel more surgery to revise someone else's bad judgement, once will be enough. They can give me all the opinions they want, but I already know that I don't need or want their services. Nor do I think I can be inpatient there ever again. Talk about PTSD. So even though this is not ideal, it is best we are home dealing with this.
I just want to get the okay to go To Cicny and then go. Really, it is not all that hard if people think of what is best for Samuel and not what is best for their pocketbooks. I guess I just don't trust anyone with Samuel's gut. If they send us to Oregon, I will just get us transferred because I will ask a surgeon so many questions about his skill, credentials, and what makes him think HE can do better than an expert enough to take on our case. His eyes will roll up into his head and we will be sent packing. Having an MD after your name does not mean you know ANYTHING of what we have been through. I just don't trust any of these people at the moment. I just hope we do not get to that point because Samuel doesn't have time for this. If his last anal closing created an ileus, then the next one will be worse because his gut is tired of the turmoil and still in shock now two weeks after the last dilation.
Please keep praying that our trip will be authorized. If it is not, I am seriously thinking that we might just have to go in every few weeks for a sedated dilation in Tacoma until we can MOVE and then there will be no question, no fighting, and no heartache. It will just be a huge PITA...for everyone, Samuel most.
8/4/06
Long story short. The x-ray shows an ileus which is VERY frustrating because no one in Tacoma knows how to treat it at this point. Samuel should be on complete bowel rest right now until it clears up. This has obviously been our problem for weeks now and thus we have been given the wrong medication to fix it. He was given tons of stool softeners as we were led to believe he is full of poop, but instead he is full of air and water that cannot get past several loops of intestine. An ileus means his gut has stopped working in certain places. This is a partial ileus and not a complete one in which the gut stops completely and is in a state of shock. It is very painful, as Samuel well knows, he has had them happen on several occasions. One before he lost his colon and several before and after gut surgeries. This has been my theory about the anal closures causing his gut to slow down or stop to compensate. And now we have it on x-ray. The only reason it is not worse and we are not hospitalized is that we have not let him eat. Thank God.
Our ins still has not okayed Cincinnati. After a long day of phone calls, I got the letter out of Children's stating that they have done everything for Samuel and are now releasing him into Cincinnati's care because they can no longer help him here. So that part is done. I found out that the burden of proof now lies in our Onc's lap here. He has to get a Surgery Consult from his colleagues and then use their referral service to see if anyone in Oregon can take Samuel on. You want to talk frustrating!!!! Frustrating because any General Surgeon "thinks" he can do an anaplasty so are they going to say, sure, send him here, and possibly make things worse? I don't know.
I am still just sick inside. I feel almost as bad as I did all those days and nights inpatient when no one could help Samuel and he just suffered endlessly. His medical history below could never convey the agony we lived. I literally can do nothing right now but wait. And if Oregon says they can take us, then we will have no choice but to go to another General Surgeon who doesn't know us, and have to start ALL OVER AGAIN. This could add weeks onto the wait for getting Samuel fixed.
Of course, I did not get the x-ray read until 4pm when it is too late to do anything so here we sit, Friday night, weekend with no doctors around and our kid suffers. Same old story. I am completely unimpressed and exhausted from this.
The Doc in Cincy asked if anyone has decompressed his colon and checked his anus for size. Of course, no one did. The only thing offered was a medicine which I know will make matters worse. Now we can do nothing until Monday. Our only hope now is that he improves on his own.
Tomorrow and Sunday......we can do nothing. The resources in Tacoma are such that it could take days to get a letter back to our Ins documenting all the hoops they have jumped through. The burden of proof should not be in their hands, yet it is because they are the only doctors who will actually return calls. UGH.
Thank you for your prayers and checking in. I wish I had better news.
8/3/06 - Fourth Update
We are back from spending five hours in the Onc clinic. Samuel now weighs 17.2kg after weighing 18.4kgs two weeks ago. His labs were astonishingly just about perfect considering that he has been living off chicken stock and popsicles. Our Onc wanted to know my recipe for the stock. Such a testament for good nutrition! So I was happy about that anyway.
They gave him an IV fluid bolus and it wasn't until he peed light yellow that I realized that he has been peeing almost orange. So I know that is helping. All these people in Tacoma just want to do anything to help and have bent over backwards. I also realized while there that he is pooping green bile now along with mucus. An x-ray was ordered and it is the weirdest one I have seen yet. No one that looked at it knew quite what they were looking at. Basically, he is full of stool and now it goes really high up which explains the "puke cough" which is now back. And his rectal pouch looked like it is either full and distended or completely empty. Neither I nor the Onc could make sense of it. He thought he saw masses of poop in several areas now. But the GI there was in the OR so he was unable to give us a "professional" read so pretty much we know he is full, and not much else. We also know that we have tried everything to clean him out and that is not working either. We were hoping to get in for a good clean out tomorrow but if the rectal pouch is empty, that may be useless because stool is too high up. Our Onc is also having the Surgeon at this hospital look for any other narrowings or strictures that may have been missed. So we should know more tomorrow. As for right now, Samuel is not dehydrated, but not relieved either and there is no plan at the moment.
My Mom was able to call everyone for us in the time it took us to travel to Tacoma. She called me in the parking lot to tell me she had just got done talking to the legal end of Seattle Children's and you start mentioning lawsuit and I guess that gets their attention. Our Surgeon was called in the middle of a transplant to make a decision. As things are now, our care is now transferred to Dr. Levitt in Cincinnati. Everyone thought that that means our ins HAS to pay for this now as our caregiver is now Dr. Levitt period. But I have no authorization and the doctor who was supposedly "reviewing" this denied it and then left for the weekend not returning to the office until Tuesday. My Mom was going to get another "doctor" there to review it but suddenly they could not find Samuel in the system at all. Talk about frustrating.
My mom just sent me a written account of who has been called including full names, phone numbers and what has transpired. I now have just about every head honcho at Children's contact info. As well as their expressed desires to expedite Samuel's journey to Cincinnati. Thank you, MOM!!!! Her legal training has paid off as I see in her letter to me. I could not have done all she did and taken care of this family too.
I thanked our Onc again today for taking us on back in December and taking care of us so well now. Also for NOT pushing the chemo on us and being so understanding of our circumstances. We laughed just a little about Mary just telling him that we were a wonderful family, but neglecting to mention how things turn emergent fast with Samuel. I told him that I think we ARE a nice family and considering everything we have been through, we could be extremely bitter and awful. But we aren't But on the other hand, DO NOT piss me off. I will not back away from confrontation. I WILL come out of the corner throwing punches. I will do whatever I have to. I will. Most people don't as he and I both agreed.
Well, apparently, our surgeon here called Dr. Levitt to TELL him that he was transferring Samuel and what do they need to do to get this through. So I expect that some people will be doing lots of calling and faxing, etc tomorrow. As for me, I want the day off. Haha, we know that won't happen. Of course, for Monday, it it still too late and if Samuel had some relief, it would be better. As the gal in Cincy said, I just cannot imagine him going through this for another week with no intervention.
Tonight, we do not have a date in Cincy. All the plans have been canceled so my hope is that I will know a date in the morning and then can make travel plans accordingly. I also hope that if the x-ray here is too funky, that it can get to Cincy to our NEW DOCTOR, and he can give our doctors here who WANT to help, some ideas. I hope that the ball starts moving tomorrow.
And I still feel sick. No amount of enzymes or probiotics can ease that awful feeling in the pit of your stomach when you feel helpless, and scared. I hope that tomorrow we get some clear plans. This update is completely unorganized and I don't even care.
Oh, and I called the Ins after hearing that Dr. Levitt was our new doctor to demand WHEN we can leave. No one called me back. I imagine they did not like the message I left. Pretty pissy, but I am pissed!
I talked to our Onc for quite awhile today about Samuel. I think the letter he wrote documenting his medical history was really the first time he got a clear image of what we have lived. He told me he just cannot believe he lived, and that he can still be so happy and HEALTHY in spite of the current circumstances. Apparently we have to consult with the Oncology team in Cincy by request of the doctor there. I asked our Onc to make sure the letter he sent makes it VERY clear that we are DONE with treatment. He is also going to call the Onc who will be on call there as soon as I know who it is so that no one makes ANY mistake with our case. He doesn't think we will have a problem, but as I reminded him, many of them do not take no for an answer very well and I don't WANT their opinions. Our decision has been made and we are very happy with it.
I told the Onc that I want to bring him home with a new butt, and not another ileostomy. I thanked him for going above and beyond for us, a case he took on without really knowing what he was in for. There are good people out there. While a lot of the bad things happened to Samuel early on at this hospital, if the staff could have fixed him with their love, he would have never been broken. This is something that was sorely lacking in Seattle.
Thank you for your thoughts, prayers and checking in on us. Please keep praying for Samuel to get relief soon. He has been suffering with his butt for almost a year now. Looking back, I can see how his anus and rectum have been an issue since his gut was hooked up. Probably would not have had to live this if we had been told to seek out the experts.
I did sleep last night. I hope to sleep tonight too. I hope Samuel can sleep. I hope that someday he can eat again. I hope that someday he can be happy again. I hope that someday we can have a life again. One without emergencies, without people only worried about money, one where WE as a family can heal. A life where Samuel can be free of pain and hospitals. Speaking of which, I have all his CT's in hand from the hydrocephalus of two years ago. I have all his shunt info in hand JIC the doctors in Cincy need it. We are also getting a doctors note about his hardware JIC it sets off metal detectors at the airport.
Samuel says he wants to go to the "new" hospital. He says numerous times that he wants his butt fixed. It is agonizing knowing how many times we have gone in and never fixed this. No wonder I feel sick. Samuel's medical bracelet arrived just in time for us to leave.
For those of you new to our saga, I leave you with our Onc's letter. He said he was cross eyed by the time he had finished it.
August 1, 2006
To Whom It May Concern:
Re: Samuel Backus, date of birth 4-21-2002
Samuel is a four-year-old male diagnosed 4-20-04 with precursor B cell ALL with normal cytogenetics and CNS 1 by diagnostic LP. He was high risk by WBC criteria (265,000) and was treated as per CCG 1961, arm C. He had CNS and gut complications that have limited chemotherapy administration. Because of his numerous, severe complications his parents have declined further chemotherapy. Most of his treatment was given at Seattle Children’s Hospital. I have summarized his course as best as I can.
Treatment summary for ALL:
•
Induction per 1961 completed
•5/4/04 admitted with MRSA pneumonia. Developed pseudomonas sepsis, typhlitis with perforation, and colectomy.
•6/7/04 became obtunded and found to have non-obstructive hydrocephalus. VP shunt with multiple complications.
•6/29/04 transferred to Seattle Children’s Hospital for further shunt management and care. Received the remainder of his chemotherapy at SCH.
•7/04/04 6MP and Methotrexate orally.
•11/04 began Consolidation from Arm-C 1961
•1/05 began IM, discontinued due to severe gut dysfunction and hospitalization.
•3/4/05 completed IM
•4/05 began DI, discontinued on day 2 due to gut dysfunction.
•6/05 Augmented IM without steroids and half dose of 6MP and Methotrexate
•8/1/05 through 12/05 treatment discontinued due to gut complications
•IT chemotherapy with BMA 12/05, 1/06 and 2/06 clear of leukemia cells
•MRD results indicated 1-2% abnormal cells
•2/06 treatment stopped
Peripheral events and treatments:
•5/4/04 Pneumonia followed by sepsis, acities, typhlitis, lung collapse, and MRSA.
•TPN induced hepatitis with anorexia
•5/28/04 Total colectomy due to typhlitis
•6/24/04 Hydrocephalus with unknown origin. Surgery included: two VP shunts, two ventriculostomies and two VA shunts and a Third Ventric.
Currently the pt has a Metronic Valve VA shunt, which is set at a pressure of 1.5. The 11/04 CT scan showed resolved hydrocephalus and normal ventricles
During this time period CSF taps occurred on five separate occasions in the peritoneal cavity due to non-absorption with VP shunt where liters of fluid were extracted.
•2/7/05 Iloestomy revision due to closed stoma, surgery revealed kinks in small intestine and pancreatitis. G-tube placement and anus opening. Skin on the anus was noted to be similar to that of a burn patient. Anus closing and rectum narrowing continues to date.
•8/12/05 Ileostomy take down with reconnection. Numerous adhesions/scar tissues noted.
•11/05 port-a-cath replacement
Additional history:
Allergies: Asparaginase, Oxycodone, Methadone
Feeds continue at 90% through g-tube: diet monitored by Naturopath, Dan Labriola, ND (206) 784-9111
Now toilet trained
VA shunt and Oncology history between 7/04-12/05 contact Children’s Hospital, Seattle, WA (206) 987-2000. Samuel is also known/followed by Children’s pain team for pain management.
Current treatment plan:
Samuel is monitored at Mary Bridge Children’s Hospital pediatric H/O clinic for port-a-cath maintenance and monthly blood counts.
A palliative care conference completed 12/14/05 (see Decision Making Tool attached) resulted in discontinuing chemotherapy to allow Samuel’s GI issues to be addressed. Parents are clear in their wish to discontinue all chemotherapy for Samuel currently and in the event of relapse.
If further information is required, please advise.
8/3/06
Third Update for today
by Kristina
Hello All -
Jen called and asked me to post the following for her: I hope I have the details right.
They are at the hospital in Tacoma. They are admitted for IV fluids. The docs can feel the large mass of stool in his gut. They will do an enema under sedation tomorrow to give him some relief.
Meanwhile, Jen's mom called and raised a stink with everyone and found out that the State had sent a request to Seattle for Samuel's records. They didn't say who they were and the hospital didn't respond. The State then denied services to Samuel because they didn't receive word back from the hospital. So they denied secondart to lack of information. Somehow or another, Jen's mom also raised such a stink that they interrupted Samuel's surgeon in Seattle in the middle of a liver transplant surgery. He then released Samuel's case to the doc in Cincinnati. What this means is that it is looking probable that the State will let them go after all, in light of these recent events. The doc in Cincinnati is now Samuels doc and that should make a difference. So she won't get there by tomorrow, but is hopeful something will come together for next week.
Meanwhile, Samuel should see some relief from his continuous pain by tomorrow.
Jen sounds good. She loves hearing from you all, so please load her up with emails. She will be able to check messages later from her laptop.
If you have been thinking about buying something from her store for yourself or for gifts, now would be a good time. All money from the store goes directly onto their debit card and they can use that for food, gas, etc. during this time. Don't forget, Jen is esentially blind and being away from home is a stressor for her, to say the least.
She will kill me for saying that, but... OH WELL!!!
Thanks, everybody.
Kristina in the Arizona Desert
8/3/06
Second update.
We have been denied. Need I say more. We are going to Tacoma for assessment and medical management because I cannot take this anymore.
8/3/06
Everything has been canceled in Cincinnati. We have missed our window to get there. Samuel must now suffer this out at least another week, if not longer. Our Ins did speak again with the doctor in Cincy yesterday but said they had not gotten very far in decision making at that point. Cincy said they have never seen anything get to this point without someone breaking and okaying the treatment. They cannot believe we might have to wait another week for help. Please pray for Samuel to be able to hold on with no life threatening complications, except starvation of course. I guess pain will just be something he will never be without.
Pray. I cannot believe God will forget us. I have been advised to NOT show up in Cincy in the ER either so that option is out. We have NO help. I am hoping someone will call with the magic solution soon.
8/2/06
If you are checking in to see if we have an answer. We don't. We are still impatiently waiting. I know that they have been working on it today as they talked with our Oncologist this afternoon as well as yesterday. I faxed a letter stating that someone should speak on Samuel's behalf since he cannot. Mary thought that if that did not convince them, nothing would. But we are still waiting. All the plans set for Friday and Monday look like they are a bust now as I don't think we can even get airline tickets at this point. Samuel remains the same, miserable. Everytime he screams out in pain, I think I cannot take anymore, and yet here we are. I will spare you the rest of the details of his misery. I am exhausted from lack of sleep and so is he. He hurts more at night and wakes up crying, and I am just sick with worry that our one hope, one light at the end of the tunnel can be stomped out. And then what? I don't know. The whole thing is sick, sickening and I have felt that old feeling I have had in the past of waiting all day hoping for the best but planning for the worst. Even if they approve this tomorrow, I don't see how we can be there Friday. If anyone knows of airlines which offer a Compassionate Rate for people who need to fly for medical needs, please LMK. I know American Airlines does, Delta does not. At least then I will know where to start if this does get approved. Thank you. Everyday we wait is just one more day of misery for Samuel. I just cannot believe we could get this resolved and one person and 2500 miles seperate us.
By the way, the Surgeon in Cincy would do all this for free. It is the hospital costs, anesthesia, meds, etc. that are the issue here.
8/1/06
If we ever needed your prayers, It is now. If you are reading, please pray that the independent Doc reviewing this case allows us to go to Cincinnati because right now, they are trying to find ways of keeping us here...... Please pray. We have got to get help. Thank you.
I can't eat, I can't sleep, although unlike Samuel, I could if I wanted to. Our Social Worker, Mary just sent me this...
O.Mk. Dr. I talked with the med director of dshs. He needs some documentation faxed to him which we will do first thing tomorrow morning. Dr. I will finish up the ltr tonight. Also the med director is planning on contacting Dr. H at Children's and possibly Dr. Levitt. Dr. I said the man sounded reasonable and did ask alot of questions, so it sounds optimistic. I will check in with you tomorrow.
I hope you can get a little rest tonight knowing you worked very hard today for your child.
take care
Mary
How am I supposed to sleep knowing that my child's life or death is literally in the hands of someone who is most concerned about money. They have the power over his body and when and if it will be restored. I am sick. I could cry but it would do no good.
The people in Cincinnati are working overtime to push this through. Even the doctor there talked to our Ins telling then why they need to care for us now and why this is an emergency. It is not a matter of IF this can be done in the state, it is now a matter of competence. Seattle has failed us. I called personally to plead my case with them. I don't know if these people are human or not and it is just impossible to explain ALL we have went through.
I think in order to truly understand what we are living, these people need their butts sewn shut, colons taken away and then fed until they puke. Let's not forget taking the red hot poker and sticking it into their anus so that they can have the butt of a burn victim as Samuel has now. Oh, and then, once they are so full they are going to burst, let's leave them like that for six months using only laxatives to try to get the poop out telling them they cannot eat or they will only make it worse. No adult would stand for this. You can bet it would be fixed right quick. Samuel has lived like this for almost a year now. Does that make the picture clear enough as to what we are living? Try explaining this to a four year old who has known nothing but pain and agony the past 2+ years. Try to make it okay, when it isn't. None of this is okay. This is NO life...for anyone.
Samuel cannot eat. He is living off popsicles and chicken stock. He is starving. He is crying because he wants to eat and his butt hurts. He cannot sit down. I just don't know how much more plainly I can put this. If it were possible for someone to FIX him here, we would not be living like this now, almost a year later.
I will end this with a note from Monika. Someone who at least has a clue what Samuel is going through.
I have said it before, and I will say it again, how much suffering
must that poor child endure???!!!???
If it is unbearable from my end, I can't even imagine how unbearable
it is for you all, and most especially, for Samuel.
Why, oh why, oh why do they let it get this bad? Why can't they fix
it already?
I know the answers, but am exasperated.
When I started this email, it actually looked like they would help
Samuel in the hospital.
I just can't get my mind around how he has been treated at the
hospital...
How do things look with Cincinnnati? I just hope that they can see
him ASAP, and that all the logistics work out. It seems unbelievable
that he would need to fly across the country to get treatment! I
hope that Seattle is shamed by this.
We have found someone who WANTS to help us. Someone who is qualified to help us. They are working OVERTIME to get us there. I should be packing. I should be trying to get airline tickets. But instead I can do NOTHING. but wait on people who simply cannot fathom what we have lived the last two plus years.
They have put Samuel on the OR schedule for Monday. We would need to be there Friday and they are planning to clean him out at that time so at least for one day, he can eat. We would check inpatient Sunday and have the anoplasty Monday. There could be an end to all of this, it is in sight. It is a crime that we have to prove anything to the state right now. Samuel did not ask for this. He doesn't deserve this. I am just sick. I know God has us in His hands, I just cannot wrap my mind around anything less than Him getting us to the right place. Why must it be so difficult?
Please pray that they give us approval tomorrow before it is too late for us to even get there this week. Please pray that there is compassion in this system...somewhere. Thank you.
7/31/06
We may have a possible surgery date on 8/7. This is pending our insurance approving it. Please pray that this is done quickly as it is now, we would need to leave here on Wednesday. Samuel had a rough night. He is hurting, he wants to eat and I am damn sick and tired of telling him no.
Well, Children's did follow up today. After talking with me about Samuel's weekend and how he is today, they want him seen in their clinic on the 10th of this month for follow up. Apparently it is fine for us to just continue on like this forever. They did mention if he stops peeing, we should come in.
Also, it was noted in our chart while we were inpatient that there in fact was an area of impaction in the lower ileum. This is news to me since all I was told was that it wasn't "that bad."
UGH!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I need to be thinking of packing right now and I can not even concentrate!
7/30/06
The day we went to the ER, even the pool did not help Samuel. He spent the day doubled over in pain, trying to poop, and nothing coming out. Like cramps the pains came every ten minutes or so. His butt was so sore, he could hardly walk or sit down. I tried another suppository and still nothing came out. I started to get concerned that we were just adding to the problem at that point by continuing to keep him hydrated. I kept getting visions of him busting a gut so we called Mark's Mom to come and get all the kids and we and Samuel alone went to the ER. We arrived at 7:30PM but were not taken back until after 10PM. He had a few dime size acid water poops while waiting which only made things worse. An x-ray was taken and he was full of poop, as we had thought. Mainly air on top but more and more watery poop as you went lower. His rectal pouch was full of watery poop, but then no air or water at all in this rectum. It was the assessment of the ER Doc that the dilation did not work, or that his rectum had collapsed. They called the Surgery Resident who admitted us with the assumption that we would go to the ER the next day. We were admitted and into our room by 3am. I was not enthused to note that we were not on our regular floor and were in a double room.
His port was accessed and labs were drawn. I guess we got a free leukemia screening since blasts were also looked for in this particular set of labs. None were detected, of course. Our IV team lady remembered us from way back when and asked if SCCA was full. SCCA=Seattle Cancer Care Alliance. I laughed and told her we were no longer SCCA and why. She was quite thrilled for us.
So, our bed was at the front of the room and our new neighbor was at the back. Well, he was quite busy. Neuro issues and needing significant rehab. As I later found out, he could not eat, talk, walk, and could barely move. Sound familiar? Well it was ALL TOO FAMILLIAR. IN fact, most of the people going in and out starting at 6am were people who knew us, way back when. Quite frankly, I did not need that walk down memory lane. I mean, I hope it helped them to know that there is life after all that and hope for improvement, but we have our own problems. The many many people who disrupted my no sleep that first day were a constant reminder of how little help we were now NOT getting. Every person who came in Samuel would ask if that was HIS doctor. None of them were. Finally at 10am, note Samuel was not supposed to eat or drink at all, they showed up to hear the story all over again. No one had yet talked to our surgeon. So by 12PM, I asked our RN to call. She came back telling me that they were not going to do anything that day. I thought, fine, our Surgeon just came on as Attending, he is busy, he will get to us tomorrow. Samuel was feeling better anyway despite not pooping at all that day. Samuel was allowed to do clear fluids, take a bath and we went roaming. He was feeling better getting IV fluids all night and getting some bowel rest. A few hours later, our RN told me that they decided they wanted to try Go Lightly. This is what they used for our previous gut cleanout that was SO awful. I refused. First, it was so awful, WITH A BAG, that I knew he just could not do it without one in the condition he was in. And it took ALL NIGHT and even then he wasn't clean. No. On top of that, we are double booked, does this other family living in tragedy need to live ours too? NO!!!!!! I could just see hours and hours of acid water poop, screaming and torture. NO!!!!!!!! Not with the RN I had and the lack of support from their team. Plus, I could do that at home. So, then she mentioned that they also wanted to throw us in isolation and culture for all the gut viruses, -diff, Rotavirus, etc. Even though all his labs were FINE. I refused. Flat out refused. If I wasn't pissed before, this did it. That also means that we could no longer leave the room and everyone would gown and glove up to come in. Also, we should have a private room if we are quarantined, but they did not have any.... Plus I realized after being there a day that the kid next to us was running a temp the whole time and Infectious Disease came by so I don't know if HE should have been in isolation.
I don't know where they thought they were going to get poop for this since he WASN'T pooping anymore. I told her to tell them that if they were not going to take him to the OR, then send us home. I could DO NOTHING at home a lot easier. At 4PM some Resident shows up to ask why I refused both of these things. So I again, explained the above. Told him to tell our Surgeon, do something or send us home. Well, he says he will be "right back." Well, right back is 10:30PM and yet another Resident. He says they are just SO BUSY and did not have time for us today. We will probably go to the OR the next day. Well, we did not. Again, we sat, no food, just IV fluids and popsicles. NO poop.
Our RN even commented to me about how AWFUL the Surgery Team is to deal with. What does that tell you? Both of us were livid by the end of the first full day there.
Our surgeon basically said that he did not believe that Samuel's anus/rectum could close up that fast and refused to even come to see us. We never saw or spoke to him at all. So, I demanded they do one more x-ray and then release us. It took forever and I swear that the day we left we had the dumbest slowest nurse ever. I was ready to go without signing papers. It was decided that we would do the Go Lightly at home and someone would call me on Monday to see if things had improved. The Resident who ordered the X-ray promised me he would come back in five minutes. I waited 30, then left. Without hearing about the film, without the RX for the Go Lightly. They also think I am bringing a stool sample in to the lab either tomorrow or the next day........HAHA!!!!!! Are they just completely stupid? Must be. We left because it was obvious that they were not planning to help us and had we not gotten out Friday, we would most likely still be there today.
Other things that made the trip awful. The boy next to us was probably 5. He must have had an accident because last week he was in kindergarten. His parents were still getting used to the hospital life. Imagine being MY neighbor. So much for the Right to Privacy. You have none. He had tons of visitors, tons of doctors, and tons of gifts arrive and they had to go right past us everytime. Samuel was mortified to see a dozen balloons arrive that went right past him. He cried for an hour. I took him down to the gift show and let him pick out a few things though so that helped. While down there, I watched a Grandma tell her Granddaughter that they had "more time than money." There was Delma's words...I did a double take. I also noticed the family left the boy alone a lot. He was unable to do anything for himself including refusing things or people. The mother left him early in the AM to do God knows what. All of their docs round in the morning so the first one to come in notices no one is there and asks him if she can mess with him. Like he can say no! He cannot say anything! So she proceeds to do her checks. The next team show up and do the same. I can only imagine how scared this kid must have been being so new to the "system." After going through this very same thing I can tell you that while on the regular floors, either myself or Mark was always with Samuel. If I stepped out, it was for less then five minutes and my RN's were told that NO ONE is to enter my room with Samuel without my presence unless it was the RN I trusted. They could wait the few minutes it would take me to get back. Oh, yeah, I never leave when I expect them to come round. The whole thing made me feel ill at times and I was operating on very little sleep to begin with. Knowing we were not going to get the help we needed only made it worse. All I wanted to do was get out of there once I realized that no one was going to bother. Imagine poor Samuel in a bed waiting for a doctor to come to see him, and then no one does while many many walk right on by him to see someone else. We were treated like our problems were NOTHING.
Our first night at home was awful because he went from almost complete bowel rest to us having to keep him hydrated. He screamed most of the first night in pain and we again resorted to morphine. The next day, we were able to pick up the Go Lightly and start it. It has helped somewhat. Basically, they give you four quarts and you are supposed to be cleaned out by the time you finish it. Well, we are on day two of this and while I haven't been giving it as aggressively as they would at the hospital, he is not clean. The Resident who gave it to us thought that two doses twice a day for two days would do the trick. He has had well over two doses each day and NOT clean. Still getting little tar brick chunks and mucus and acid. He feels better as his body is not having to digest this stuff, but one might then wonder how long a person can live on it. It looks like poop is breaking up and slowly coming out..
It has taken me the last two days to process all of this. Basically, we went to the hospital to get help and they brushed us off saying "It isn't that bad." Our Surgeon refused to even give us the time of day leaving us to Residents who were unable to get our problems addressed. So we left only marginally better than arriving, only due to bowel rest and IV fluids.
So today I e-mailed the Surgeon in Cincinnati to let him know what has happened here and about this past weekend in particular ending with an update of how Samuel is today. I told him we cannot wait for a date with him in September but at the same time, did not feel comfortable having the surgery done here either. After this last visit, if I never step foot into Children's in Seattle, it will be too soon. I got a response in less than an hour. He felt we have become emergent and they are looking into getting us in for surgery there at or before the date of the surgery here. We will need to go sooner than that date to manage the problems we have here since our Surgeon is unwilling to even see us. Tonight, I am thankful that SOMEONE gets it. Someone who gets that this IS an emergency not to mention that I have HAD IT with all of it. If I am going to relinquish my freedom to hospital staff, it needs to be staff who are going to be caring and compassionate and HELP. Something is wrong, very wrong with Samuel right now and we have no answers. This is only going to get worse as evidenced by the last few days. I wanted him to go to another surgery strong, built up by nutrition. Now it looks like he will go to it weaker than we have hoped due to incompetence here. Cincinnati told us, if we can get there, they will do whatever they can to help us and to keep Samuel stable until the surgery can be done. So it may be an extended stay there. Plans will be made over the next few days with them and then we need to figure out how and when to get there, etc. We need to get Samuel stable enough to fly as well.
Well I was trying to keep this short, but thinking of it all just pisses me off all over again. Samuel keeps asking for a doctor to fix his butt and his tummy and life just seems full of disappointments for him. I hope there will be light at the end of the tunnel now. At least we know we will be with the right "team." Please pray that arrangements are made quickly and that we can get there. Pray that Samuel remain stable enough to make the trip because it won't be an easy one. Pray that God make this work NOW and that Samuel get relief.
7/28/06
We got home tonight from being inpatient. Samuel is no better than when we left. Our time away has been wasted and I am in awe of the incompetence I have had to deal with once again. I am so upset tonight that I am just writing to LYK that we are home. Samuel still cannot poop but is full of it and most of it is water that somehow cannot come out. He is miserable, his butt is severely broken out and the procedure we were admitted for was never done because our Surgeon did not believe he could have closed down despite what everyone else said the day before. He never even looked. That is all I am going to write tonight. I don't know what we are going to do. Please pray that this is rectified here by us since they don't seem to have any solutions or feel we have a valid problem.
7/26/06
Going to the ER. Please pray.
7/25/06
We have a date. August 17. We have to be admitted the day before for the dreaded gut cleanout. Right now, things are going pretty bad for Samuel. I had hoped we would see improvement before now, but he can barely poop at all. What is coming out is like paste and tar. It has been horrible. I was so concerned today that I sent Mark to the store for some glycerine suppositories to see if that would help break things up. Well, none of us were impressed with doing it, and worse, it did not help. On Samuel's good days he will poop 5-7 times and I mean good size poops. Today we barely had three skid marks. Same for yesterday. He just sits and screams on the toilet. If he doesn't make it, he is just frozen in place screaming while what little there is comes out. I even think after today that he is forcing himself to NOT poop because it hurts so much. Gravity has been such a bonus as of late and even it is not helping right now. I seriously wonder if he is not allowing it to come out.
And the misery comes in waves. Sometimes he is fine, but suddenly he won't be and the shrieking is unmistakable. The kids have spent a lot of time the last few days in the pool. The heat has been awful and I wonder if this is part of the trouble. All the water loss stealing even more water from his gut and suddenly nothing is lubricated on the inside despite everything I have tried. I don't know, but I am very concerned tonight that he needs to "go." I had no issue getting the baby suppository in so I know it is not that. But it really only works in the colon and since he has so little of it, I think that when his anus closes that his gut just shuts down in response and it takes awhile to wake it all back up. So, as you might imagine, he has been pretty miserable. Note my Ode above. Besides sleep, the pool is the only escape for him currently. I am thankful that there is an escape, just wish things were better...they seem so much worse right now. Looking at the pictures and videos, you would not believe it is the same kid.
During the time we spent inpatient in 2004, that awful three months, I remember feeling like my insides were screaming for things to change. I wanted to jump out of my skin, jump out of the window of the room, do something besides sit there and watch the same thing day after day. I feel that way when Samuel screams, when Samuel hurts. This has gone on FAR too long. We are upon the anniversary of his hook up surgery and that means that we have been dealing with this for almost a year. How many months of this year have been decent? Maybe two? Isn't that about how many I figured for last year too? What a price to pay for your life. I am still waiting for that restoration....God...this year....please?
7/23/06
Check out the pool videos
7/20/06
It is amazing how a 45 minute procedure can take all day to get through! I think I say this every time but when you spend 8 hours away for something that should be so simple, you tend to notice.
The short story is that Samuel's anus had closed to a 7, almost half the size of a newborns. This was expected by us so we are not at all surprised. I am just glad we got in. The surgeon came in to talk beforehand and reiterated to me that this came on rather quickly. I told him that one day he was fine and the next he was puking. He hasn't puked since chemo in February so it was a really big deal. A couple years back he puked all the time so it was nothing new I guess. But these days puking means something is wrong, plain and simple. So the plan is that instead of doing this band-aid style fix, we will go to surgery in the next 2-3 weeks. Still waiting on a day but possibly as soon as Aug 4. He did another rectal exam and noted that the scar tissue is firming up in two areas just behind the sphincter so removing that should do a lot of good. Or so we all hope. I can tell that the surgeon is getting sick of this crap, pun intended, just as we are. Going in every month or so is stupid and a waste of everyone's time when there might be a better way. At least that is obvious to us all now. This is beginning to remind us of the CSF taps of two years ago. I felt just as relieved to bring him home today as I did then. I think the Surgeon might have figured out that we know what is up with our own kid because he asked about how long we felt we could go before needing another dilation, and how long until the skin heals up around the anus after a dilation so they could plan a surgery day that would not leave us in the position we were in today. I hope that the fix, which today, did not sound as invasive as before, will be clearly better immediately. Just as the VA shunt was immediately better and we knew the problems were solved. I hope that is the case. The fix is now being called a Stricture Plasty and doesn't sound like he will mess with the outside skin at all. So the inpatient time will be only a few days rather than a week or more. And then hopefully, we will never have to see them again! I would just really like to stop being dependent on hospitals for Samuel's bodily functions. Everytime we cross the floating bridge from Bellevue to Seattle, I wish I could sail away on one of those ships and just leave this all behind.
The anesthesiologist this time was the same as last and was unhappy to know that Samuel woke up so badly from the last dilation. This time she only gave him propofol and he woke up like the sweetest happiest man I know him to be. It was such a relief to have them bring back a happy man rather than a mad one. We asked them to use his port and it drew as well so good news there. The anesthesia resident was surprised when we allowed Samuel to walk back with him alone and Samuel happily went. A lot has changed in two years time. I guess if you have to have a lot of surgeries and procedures done with strangers, you might as well think it is fun. He seems to, why, I will never know but I am thankful because this could be so much harder if he was always afraid and did not trust the nurses and doctors. I can not trust them enough for all of us I guess. We also had him premedicated with Tylenol since we are pretty sure his butt usually hurts afterward and I think this helped as well. I don't know if the surgeon even thinks about after pains since no one ever gave meds before but today he asked if we had enough meds at home. I let him know I have a nice selection.
The anesthesia NP also remembered us and commented that we were always laughing and joking around and happy, in spite of the circumstances. It is nice to be remembered that way. Of course, that is Mark and I together that she remembers. It is always different when you are alone. Things are always better when we are together and we always seem to find a smile or goof around just a little.
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