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We did (are finishing) Michael’s fourth dose of IVIG today at the hospital and so far so good. He hasn’t gotten a headache yet like he did last dose. They did, however, redo his labs as the ones in Cincinnati were so low and he’s had three doses of the higher GCSF shots. Good news, his white count went up to 4.9 and his anc to 3.9 (absolute neutrophils are the part of the white cells that are really doing the work and that we watch the closest), his platelets were worse, but that seems par for the course the last few months. His lymphocytes are the lowest they have been since I started tracking it all in September, they are the brains of the white blood cell line and not affected by the shots he gets. Still, all in all we were hoping for a better ANC and at least the higher dose worked! Not so good news, he lost 1.5 pounds from last month–not a lot for most people, for him, no good. I’m glad we’re getting the IV nutrition started next week.
We had thought we would be zipping back this week but the coordinator called yesterday and the earliest she could get him scheduled was next Wednesday, so we’ll be heading up Tuesday to spend the night and head in early that morning if I can’t shift it later in the day and just drive right in…or I’ll hit the road at 3am, but that doesn’t sound like a good idea as it’ll just be him and I.
We met with Dr. Harris, Michael’s hematologist in Cincinnati and also a specialist on SDS. He is starting him on voriconazole (an anti fungal medication) and azithromycin (antibiotic) two months before and two months after the surgery, we are continuing the IVIG, and we will probably be going to daily GCSF shots a few days before and after the surgery as well. They are doing everything they can to bolster his mess of an immune system. They took labs and while we were on our way home Theresa (Dr. H’s incredible coordinator) called with bad news on his counts, she hasn’t emailed them yet so I don’t have the full workup, but his white count was only 1.2 and his ANC (absolute neutrophil count) was only 220…220! And this on on GCSF every other day, he has never been that low on GCSF shots. I remember once he was at 150 but that was off GCSF. Anyway, that is very discouraging, she is consulting with Dr. Harris to see what he wants to do.
So, that wraps up this trip to Cincinnati and despite having to have the PICC line placed and the horrid counts which are giving me a stomach ache thinking about–I am, as ever, grateful to the doctors in Cincinnati who are being so thorough and careful to try and think of every way they can to give him any edge possible going into this. We truly are aware of how lucky we are to be working with them and that we have them in Michael’s corner.
Coming up we will be heading back to Cincinnati in the next week to have the PICC line placed, start the IV nutrition through the night, and stay a couple days to keep an eye on things and get trained in care. Next month we have a slew of appointments to start the next phase of pre-op things.
Today was a quick day, we had an appointment with gastroentronology, Dr. Putnum who was the first doctor back in September who thought Michael was misdiagnosed with Jeune’s and really had Shwachman Diamond Syndrome. I pointed that out to him today, that he was the one who started it all, and he said it was quite obvious and started to go off about the misdiagnosis and stopped himself. We saw him today as all of the doctor’s involved are concerned with Michael’s nutritional health and weight and he said that as things stand he doesn’t have the physical reserves to do all the tissue healing that will be necessary after the surgery. We had three choices: a) have a feeding tube placed down his nose, past his stomach and etc. into his large intestines–it couldn’t go into his stomach as risk of reflux compromising his already compromised airway was too high; b) surgically have a feeding tube placed into his side, again, bypassing the stomach and going down into the large intestine; or c) have a PICC line placed into his arm for IV nutritional support. We are going with the PICC line for a number of reasons: they want to do IV antibiotics for at least a month before surgery and they can use the PICC line for that, they can do his IVIG treatments through it rather than starting an IV every month, they can use it for an IV line at the hospital surgically, and it can remain in for months–which Dr. P felt was a good idea as he doesn’t feel that his nutritional/antibiotic issues are going to be short term after surgery.
So we are going to come back to Cincinnati next week sometime to have the PICC line placed and be in the hospital for a couple days to get the nutrition started and train me on using/caring for it. Michael seems okay with it, a little worried about it going in, but otherwise at the moment he is just glad he isn’t going to have a tube down his nose for 6 weeks (which he was dreading). I have mixed feelings about it (surprise surprise) just in the fact that he needs to have a line placed like that drives home all his extra issues leading into the surgery. But for the most part I am just glad that there are things they can do that will give him ANY edge up to get through the surgery/post surgery successfully.
Tomorrow we see Dr. Harris to discuss plans in regards to his immune/bone marrow issues going into surgery.
On a fun note, we went to the zoo afterwards with Amanda and Jayden (Jayden has SDS as well) and had a really lovely time with them. The kids said our zoo (Toledo Zoo) was better but that it was fun to go somewhere different. Although I have to say that their train ride is pretty cool and you can’t beat the white tigers and manatees! A couple pictures from before my camera died are on Flickr and Facebook.
[I know as a writer that there is a fine line between honest speaking and melodrama and that the following can probably be read in either way--but the truth is, I think that sometimes we do the world a disservice in not speaking honestly, that there is something not quite healthy about our societal pressure to say "I'm fine, how are you" whenever we are ritually asked, "How are you today?" Sometimes we aren't fine and that is okay.]
While Cincinnati has been life changing for us in terms of finding out the information we needed to know, proactive in Michael’s care as a complete and complicated individual–to Michael, it is the worst place on earth and we’re heading back there tomorrow. Last night we were talking about it and getting ready for his shot and he said he wasn’t sure any more that he wanted to have the surgery, that maybe his back wasn’t that bad. I had to explain to him that the surgery really wasn’t a choice because if we do nothing, he will, at the very least, end up completely bent over. It was a difficult conversation and, I think, one of many to come over the next two months as we kick into gear getting ready for July 23rd. This week’s appointments have driven it home that it’s moving into “game time” and we’re all feeling the stress. My stomach is a constant ball of knots and sleep is starting, again, to come only at the point of exhaustion with music or a book playing loudly through my iPod so I can’t hear my heart and my brain saying over and over like I was three “I don’t want to do this, I don’t want to do this, I DON’T want to do this.”
I am thankful that we have this option, that we have people willing to do this surgery, but I don’t want to do this. It is terrifying, all the possibilities and the “what ifs” and the doctors “concerns” and I am glad they are thinking over every avenue and I am glad they are covering every base but every time I hear “there are concerns” or “this doctor has concerns” or “he is a complicated case and there are concerns” my stomach gets tighter and I wonder how I will breathe through 8-10 hours of surgery.
So, that’s the unsugarcoated (most definitely not a word) truth. We don’t want to do this, we are tired and scared and time has shrunk again and two months sounds incredibly close.
When Michael was a baby I played the role of superwoman very well, I had it all together, I was strong, doctor’s were impressed, etc. ad nauseum. The truth is, I’m older and I’m wiser and while my first instinct is still to play the superwoman and say “oh, everything is fine, we’re holding together, one day at a time, it will all work out, let’s go plant a tree, and how is your day???”–life is messy. It is glorious and amazing–but it is messy, and that is okay. So, tomorrow I may actually be superwoman for a day or even two or six, but maybe not–regardless, today, I’m not, today I’m a tired and scared mom who only wants one thing, what we all want for our children, that they be happy and healthy and I am sad that the road to not even healthy but ”maybe more healthy” for my son is one that includes this painful experience.
