Dev (Sweet Cheeks) updates!!! A lots going on... He could use some prayers (LONG)
- May 30, 2008 at 12:56 AM by DMGastroSBS
- 14 Comment(s)
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I have copied and pasted Many updates on whats been going on in the last month... I am sorry that I have not updated on here or his caringbridge site, (I have not forgotten everyone that has been following his story and praying) but I have been a bit emotional lately and I just haven't had it in me to re-type everything out over and over again... I am sorry!
May 18th |
Our new start in Miami hasn't been all that smooth... I had to go buy a new lap top today... Needed it for work and kinda at a point where we really have to keep everyone up to date with whats going on with Dev. I am so sorry that I havent been able to do so, but I can't thank everyone that has been enough!!! And the candle lighting... When I found out, I was in tears. You all are so amazing!!! The last three weeks has been something else... So much has happened, I'm not sure I can type it all out. In the last three weeks Dev has only been on the normal floor for less than 8 days and in ICU the rest. The first weekend he fell hard fast into septic shock with ecoli. He only needed to stay in the unit for that weekend and was back on the floor that Monday evening. That following Friday he was getting sick again. Throwing up everything and nonstop fevers that nothing could break. We had to completely rap him in ice and cold water towels for 10 hours. Turns out he had yeast this time around. They pulled his line and placed some new ones. Fevers, throwing up EVERYTHING, 200 hr hasn't gone anywhere!!! They were worried that the infection had spred from his blood to somewhere else in his body. So they ran every test known to man. Kidney scans, ct scans, mri's, spinal tap, ect. They found a weird scar in his left eye, odd spots in his lungs, and an older stroke most likely from Easter's episode. He threw up 5 times yesterday morning before 10 and got it all over his line site, so it had to be changed... Needless to say Dev thought it was time for it to go. He is having fevers two to three times a day. I am fighting with the team to relist him!!! They are going to get sick of me. I wrote a note saying "Mom has a relisting question... When does pushing bowel rehab (on bowel that will never slow down) stop out weighing all the deadly septic shock episodes (from his line or gut) ?! I know the risks of relisting (we have been through transplant once already), but I will not lose my son to an infection." And placed it on the front of his ICU door for everyone to see. I know I am missing a lot from the last three weeks, but I tried... Now I have a lot of catching up to do on LF!!! Really hope all our FL kiddos have been doing great this past month!!! May 18th Re: Our new start in Miami hasn't been all that smooth... Thank you guys SO much!!! Devin has only gotten up to 100 once today and hr is finally under 200!!! (170's) He seems to be a little happier tonight - watching his veggie tales. He does have a weird itchy rash all over his face and we are EBV positve... But its VERY low. Please just pray it stays that way!!! I'm not one to really be nasty, but we are going on 10 months with more steps back than forward. And the team here pretty much wants to repeat the last 9 months just to make sure. __________________ May 19th Re: Our new start in Miami hasn't been all that smooth... Dr. Kato just left the room... He said that the scans found that he had very large loops of small bowel over flowing with fluid. So that is where all the throwing up is coming from. Instead of slowing down his bowel they pretty much stopped it. And that would be our reasons for the blood infections. He said that he was going to call Dr. Horslen and Reyes again, but that he would really like to re-open his ostomy in hopes of that helping with all the infections and the bowel rehab. He said that it has worked with another child before, but it takes a long time to set things right. I made sure to let him know that Devin has ALWAYS had an infection problem (from his line or gut) and that I didn't think that an ostomy was going to do any good. We had many bad problems with it and thats why his is closed. I asked Dr. Kato "my question" and he said that he didn't want to bring it up, but that yes if things do not turn around soon we may have to look at re-listing him. But he said that it will be 10 times more dangerous to do it now after one transplant, no immune system, CMV, EBV, ect. I called Luis to let him know what Dr. Kato said and he kinda flipped... He said no way in  is he getting his ostomy back, unless he gets a new set of organs... Before I could even say why he said he wanted to try it Luis said "I don't care what the doctor thinks. I know its not going to work" So, I don't know, but at least we are finally starting to head the right way. Its finally being talked about.__________________ May 20th They did close his ostomy very early (4 months post transplant), but for many good reasons. It was doing more harm than good and they couldn't even use it for scopes. Too many issues to try and list them all, but the three big things were weight lose, bad dehydration to the point of full kidney failure, and it was causing way too many line infections do to tissue break down and leaks. I would give ANYTHING to get this bowel to work, but I don't see it happening. This other child that Dr. Kato said he did it for said it took 3 years for this way to finally get the bowel to work and she didn't have infection problems. Since the end of March Devin has had 5-6 infections - 3 of whitch have landed him in ICU deathly ill and among other things had caused a stroke. I would be more willing to try the ostomy thing if I truly felt that he could last long enough for it to work and it would help with the infections... At 19 months old Devin has had roughly 30 infections. At the rate of his infections and how worse they keep getting I truly am scared to death that he may not have much time left. I haven't said no yet, but I don't want to "waste" what time he has on something that could very well make things worse or not work at all. The last thing I want is to subject him to another transplant if he can get around it, but I really fear that he wont make it long enough for the ostomy to work and fix the problem. Dr. Kato said what is going on with his new gut in very rare and sometimes time and growth can't fix. I know how risky re-listing is (we almost lost him a couple time within the first month of transplant), but it would eat away at me if we lost him from an infection trying to save this bowel instead of maybe losing him from a second transplant. Because at least that way we were truly trying insted of "this". Sorry for going on... Hope all that made a little sense. __________________ May 22nd Re: Our new start in Miami hasn't been all that smooth... Dev was moved back to the floor late last night... He had two fevers yesterday and threw up once today. He had a barium test done first thing this morning and all I know so far is no blockage. But no word yet on how bad the dilated bowel is. Hoping Dr. Kato will swing by before he leaves for the day. One thing I must say I'm VERY greatful for is his donor liver has held up to EVERYTHING VERY WELL!!! The highest his billi has been since transplant is 2.4 (on Easter) and AST's and ALT's in the low to mid 100's. God... If he had only needed a liver - The last almost 10months would have been AMAZING. o k . . . I gotta stop thinking like that. Anyways, I added some photos of Dev our last week in Seattle and first week here in Miami. Well, I tried to anyways... I'll try again later. __________________ May 23rd Re: Our new start in Miami hasn't been all that smooth... Well, finally NO fevers in almost 48 hours and no throwing up in 24!!! His bowel is still dilated, but not as bad as it was. The only thing that kinda keeps bugging me is he keeps wanting to sleep for hours at a time. But when he is awake he acts just fine... He hasnt had a positive blood culture since the 16th, so the team said today that as long as todays comes back clean and after he finishes his antibiotics they want to take him into surgery to open a new ostomy. Dr. Kato would like to do it in his colon this time in hopes of "the side effects" not being as bad as they were with this last one. From my understanding though... If things don't get better or get worse after this new ostomy the only thing left to do is re-list. I do have a question - If he does get re-listed, will he be re-listed for all three organs again or will they just do the bowel? I have not gotten a real answer to this question from anyone. But as far as my understanding is, they don't like to mix up different organs from different donors because it can cause more rejection issues and such... His donor liver is PERFECT. Always thinking of and praying for ALL our LF families... __________________ May 24th Re: Our new start in Miami hasn't been all that smooth... Dr. Kato just left... He wants to do the surgery next week. He said what the barium study showed is they most likely will not be able to get this bowel to work, so even with the ostomy he will most likely need to be re-listed. But he is hoping that the ostomy will lower the amount of infections making the next transplant just a little safer for him. But if the ostomy does not help out with the infections we will have to list him and cross our finger and pray really hard that he lives through the next tx. He is hoping that this ostomy will buy us more timeto get him more stable for the next step to come... I am in total over load... My mind is running like crazy... His EBV numbers are up and down, but still low. CMV is still hanging around, but at low numbers thank god... They are wanting to stop one of his meds for his CMV, but I keep snapping at them when they bring that up. I don't remember who I was talking to, but I said "Go ahead and stop it and see what happens" because they kept saying "ID said this, ID said that, but ID said". I don't care what ID said or what they think they know about Dev or what they think they know about his strand of CMV... Anyways, sorry for going on... I'm not feeling all that great and I needed to vent a little... Still thinking about and praying for Ryan, Trine, Sarah, Callie, Kaden, Mario, Maxxers, Sophia, and the rest of our LF kiddos!!! __________________ May 24th Re: Our new start in Miami hasn't been all that smooth... The throwing up is back... At least we had two days without it __________________ May 26th Re: Our new start in Miami hasn't been all that smooth... Well... Dev is still throwing up every oral med he gets and still sleeping like crazy. His bowel is still dilated - I don't think they think that it will go back down to normal size... But they do keep checking for blockages... Almost as if they were hoping to find one. They are keeping him NPO until he gets his new ostomy. Re-listing, to be honest, isn't as scarey to me as septic shock... I kinda wish they would just re-list him already before he has another infection. All of his docs here are telling me all the "wonderful" things they are worried about with re-listing him. They don't seem all that hopeful with another transplant. And I think other than another septic shock episode that that is the only thing that worries me. This team of doctors as little hope of him making it through another transplant. I know he can handle it - I'm just worried about how many more infections he can make it through. __________________ May 27th Re: Our new start in Miami hasn't been all that smooth... Today has been an ok day... Still throwing up, but the dilated loops of bowel look just a little better. (But they are still seeing a couple air pockets in his bowel) They are hoping to get Dev into surgery on Friday. They said that surgery should last anywhere from 2 1/2 hours or longer based on how bad his scar tissue is. I have a feeling they're going to be in for awhile.  After surgery he will go to ICU because of his history... They don't want to take any chances. They are thinking his bowel is going to take a week or so to heal from the surgery so they aren't even going to try to start feeds until after that time frame. EVERYTHING IS RIDING ON THIS OSTOMY... I had one of the worst talks with a doc as far as plan of care goes since before transplant. I have been sick to my stomach all day... I had to leave the hospital for a little while to clear my head, so I went and walked down a beach for a little bit. I hadn't been on a Florida beach in over 10 years. It most def helped to relax me... They plan on running a bunch of tests after his ostomy heals to make sure his donor bowel is growing with the rest of him and that his bile ducts are ok as well as make sure his stomach is working well, ect, ect... If he is showing no signs of any progress in the first couple of weeks to follow surgery he will be re-listed. These are the numbers I was given today for survival rates of years post transplant primary and REPEAT of Multivisceral transplants... Here at this hospital... (the only multivisceral tx center in this region) He made sure to inform me that most (for the repeats) Don't even make it through the tx let alone the first month after... 3 Primary Transplant 1 Year 42 3 Repeat Transplant 1 Year 3 3 Primary Transplant 3 Year 46 3 Repeat Transplant 3 Year 3 3 Primary Transplant 5 Year 20 3 Repeat Transplant 5 Year 2 I'm sure you can all tell that I'm just has happy as always...  Luis doesn't even get here until late next week. God willing. But on a good note, I had to turn in my rental car today, but instead I get to hold onto it for another 6 days for only 12 bucks extra!!! __________________ May 29th Surgery is a go... I can't thank you all enough!!! Weather all of you guys know it or not, you have all helped me TRY to stay rock solid through the last almost 10 months... Dev is for sure going into surgery tomorrow, but at what time, I'm not sure yet. They have to do it before the weekend because Dr. Kato will be gone all week next week and they don't want to put it off any longer. My nurves have been on end all week - My heart has been in my stomach and my stomach has been in my throat... I've been drinking so much coffee I might as well just pump it in through an IV... I have been so emotional no matter how hard I try not to... But if you saw me in person I would play it all off like I always do - I have not been this on edge since transplant (Not even on Easter)... As Dev's mom and EVERYTHING and EVERY ODD that I have seen him beat and fight I have NO doubt that he will fight his way through a repeat transplant if that is the route he has to take, but I can't help but be scared . He has beat every odd against him so far, but I'm worried that his poor little body is not far from its limit...   to the doc that told us he wouldn't live to see his first birthday!!! He'll be two in 4 months... I am so worried about what will happen during and after this surgery and what they will or will not find... This is a very normal surgery, but they are worried that he may not handle it that well. And GOD FORBID this doesn't work!!! I can't get all the repeat survival rates, studies, nasty odds, and ect off of my mind... Maybe I should have posted this on the couch... lol You are all like family to me and even though I do not reply to posts that often, I am reading and praying for ALL our LF families and kiddos!!! You are all always on my heart, in my thoughts and prayers!!! I will get on some time tomorrow and update on how the surgery goes... __________________ May 30th Re: Surgery is a go... I feel like such a big baby right now, but I feel like we are never going to win... Or catch a break of any kind... I want to be able to take him to a park, the beach, Disney World, have birthday parties, sleep overs, check for monsters under the bed, and help with home work - Just NORMAL... Maybe I'm PMSing? lol
Elizabeth, Devin's mommy (10/02/06)
http://www.caringbridge.org/visit/devintoledo http://www.myspace.com/elisefj |
Tags: dev, devin, update, miami, re-list, transplant, infection, ebv, cmv, ecoli, yeast, stroke, mri, ct scan, ect
- Written by DMGastroSBS on May 30, 2008 at 12:56 AM
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Comments:
Awww poor devin ,You are both in my thoughts as always ,Good luck to both of you ,hugs.
I will keep you in my prayers, and will pray all goes well with the surgery. Be strong, although I know it's hard.... Sending you love, prayers, and hugs!!!!
Good luck!!! I will be praying for Devin, I know it will all go well!!!!
You're in my thoughts and prayers.
Sweet little Devin. I'm sending warmness your way. Give him hugs from all of us.
Girlfriend, you are such a strong woman and mom! Our prayers are with you and Dev; hang in there, until God says its over the fight is still on!! Love, Hugs and many many prayers, Sheila and family
As always, you're in my thoughts. Thank you for the update.
Thanks for the update...my continued prayers to Devin and you for your sanity and to the doctors for the knowledge to do what is best for Devin. God Bless
~Cassie~
I'm so sorry. Our thoughts and prayers are with Devin and you. Please know we all hope for the very best outcome!
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