We've got a LOT going on this week. Noah saw the cardiologist in Greenville today, is having his supra-pubic catheter changed out tomorrow in the O.R. at the hospital in Greenville, and he's having a sleep study in Greenville Thursday/Friday. At least I get to stay home on Wednesday! :-)
Cardiology
appointment went more or less OK. His heart size and function are
stable which is GREAT. It means that there is not a cardiac cause for
the many strange/new things going on with Noah and that is good news.
Our wonderful Dr. R believes that we are seeing significantly worsening
dysautonomia and (malfunction of his autonomic nervous system) and that
this is causing his VERY high and VERY
low blood pressures, hear rates all over the map, sudden and dramatic
flushing OR sudden extreme paleness, etc. Unfortunately he doesn't
think that we can do anything to safely treat this in Noah as the
treatment would probably do more harm than good, so at this point it's
just something more for him to live with.
He is concerned (as
are other members of Noah's team) about the fact that Noah suddenly
seems unable to have anything heal. His central line, his g-tube, and
especially his supra-pubic catheter are inflammed, oozing blood and in
some cases infected discharge, he is getting small areas of skin
breakdown on his chest, etc. He suggested an array of labs to check for
micro-nutrient deficiencies and other things (most of the obvious stuff
is routinely checked already) and also suggested that our pediatrician
work with our infectious disease specialist to see about the possibility
of starting IVIG or SubQIG ahead of cold and flu season.
Our pediatrician was in contacted with our urologist today to see if the urologist wanted to have Noah come in to the office today so he could see Noah's supra-pubic site before we head in to pre-op tomorrow. He said that
there was no need to come in as
it needs to be changed tomorrow no matter what. He'll look at it in
pre-op and decide at that point how to best handle it. (It simply won't
heal, is keeping a skin-level infection, has out of control granulation
tissue, and bleeds all of the time.) I don't have any idea what can be
done but I know we need to do SOMETHING as this site simply will not heal at all and is causing Noah a lot of distress.
Despite all of the medical "stuff," I've been so overwhelmed lately with just plain gratitude. I love this quote by Thornton Wilder - "We can only be said to be alive in those moments when our hearts are conscious of our treasures." When I look around me each day, it's obvious that my life is truly treasure-filled. I honestly can't even find the words to express how rich I really am!!!
My eight children are the source of so much joy that it often feels like my heart is going to burst.
My husband of more than two decades works so hard and is such a wonderful best friend who makes our marriage a real priority.
My church and its leadership are truly extraordinary and I've learned so much since we started attending there 17 (!!) years ago.
We have what I believe must be the most incredible medical team anywhere. Our pediatrician has been to our house over and over during the last couple of weeks and I know he'd go to the ends of the earth to help Noah. While we don't have as much nursing coverage as I'd like (PLEASE keep praying about that!!), the nurse we do have is truly stellar and her help is invaluable. Our specialists are just as amazing and are all committed to doing what is best for Noah, and our hospice team . . . well, I can't even say enough about what a blessing they've been.
On top of that, I'm ACUTELY aware of how blessed we are in regards to time and place. Even though it's easy to feel strapped financially, I am very cognizant of the fact that the majority of the women in the world would trade places with me in a heartbeat. We have a roof over our heads, food in our bellies, clothes on our backs, and countless first-world conveniences like clean running water, electricity, even things like Netflix and cell phones! Noah simply wouldn't be alive if he had been born almost anywhere else or if he'd been born 10 or 20 years ago.
I'm also thankful for all of YOU. I will never, ever understand why we have been so blessed to have so much loving support when it seems that many families face their struggles almost alone. I never take a single comment or email for granted and am frequently awed by the fact that so many of you care so much about my little boy.
I'll update FB tomorrow as I can and will try to get on here to update when we get home. Please pray that something - anything - can be done about this supra-pubic site and that Noah will be safe. Pray also for protection from infection as he's at risk for a full-blown bladder infection from the skin-level infection he's got at the insertion site (this happened once already).
Blessings,
Kate
