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Nov. 24, 2008
Better and better
I am so happy to say that Noah just keeps getting better and better - it is an unspeakable relief to know that pulling the line was the right decision. He hasn't had a fever since Friday night shortly after we pulled the line, and his infectious markers are waaaayyyyy down. His CRP (should be below 3) was well over 60 on Friday, down to 30 first thing Saturday morning, and down to 11 yesterday morning! Friday he could barely sit up and tonight I am typing this in the playroom while he climbs and hustles all over the place.
The plan right now is for him to have surgery tomorrow at 10 to get a new line. He will probably get a new g-tube button while he is in surgery as he has had this one for over a year. We will start TPN tomorrow night, and check his hemoglobin Wednesday. If everything looks great he can theoretically go home Wednesday. If his hemoglobin is too low, he'll need to be transfused and we won't go home for another day or two. We've already put Thanksgiving on hold and plan to celebrate on Saturday with family, so we won't necessarily be devestated if we aren't home on Thursday. Thanksgiving is a state of mind and isn't really locked into any particular day of the year - we can have just as much fun on Saturday as we could on Thursday. We'll get a tree on Friday and plan to decorate it with all of the grandparents when they come for dinner on Thursday. I can hardly wait!
In response to some readers' questions - no, Noah doesn't have anthrax. :-) His symptoms were the classic symptoms of a line infection, and the fact that he experienced an immediate, dramatic improvement following line removal confirm that the line was the source of infection. Also, no, we have most emphatically NOT experienced a change or decline in quality of Noah's care now that we don't have private insurance. The staff here (in all areas) consistantly demonstrate outstanding levels of compassion, professionalism, and skill. I could not possibly be more pleased and wish that every child in the world had access to this level of spectacular care.
The two remaining areas of real concern for Noah are, first, that his pica is out of control. He cannot restrain himself from eating books, coffee cup sleeves, stickers, etc. He carries a board book everywhere and gnaws on it. (Freaks us out, but the doctors said not to force the issue at this point.) This could be due to low iron/low hemoglobin or due to reduced nutrition quality since he doesn't have central line access for regular TPN. It isn't a huge worry but he can't go on like this forever.
The second area of concern is that Noah is just not sleeping at night. Saturday he was up until 3:30 AM and last night he was up until 1:30. Saturday night he was very unhappy and irritable, but last night he was quiet, calm . . . and awake. He most emphatically insists on Mommy being the one to put him to sleep (even though Jeff does it at home), so Jeff is stuck trying to keep Mary Faith happy and/or sleeping until Noah gets down. Last night when it became apparent that Noah was not going right to sleep, I had a flash of exhausted resentment - I was tired and couldn't believe that it was looking like ANOTHER long night. Almost immediately my spirit was smitten and I remembered that there will come a time when I would give anything on earth just to hold Noah for a few more hours. As I was realizing this, Noah looked at me with those unbelievably deep, wise eyes of his and just smiled at me. I scooped him up and spent the next several hours just rocking him, singing to him, and looking at him while he looked at me. I got lots of those wonderful smiles and dozens of kisses. At first it seemed like a bad thing, but now I realize I wouldn't trade last night for anything and I am so thankful for that precious time for just the two of us - and SO thankful that the Lord corrected me and prevented me from squandering those hours in selfishness. God is so good.
Specific current prayer requests:
--safe, successful surgery
--No/minimal emotional trauma for Noah (he will get versed before we go down, so even though it breaks my heart to see him crying as he's taken away, at least HE won't remember!)
--rapid healing of the new line
--resolution of pica and wisdom regarding transfusing if needed
--healing for a little cold Mary Faith picked up while here
--that God would bless Jeff as he is working so hard to provide financially for our family - it seems kind of bleak right now, but we know that God will show His hand in His way and at His time.
We also need prayer that we can reduce the number of infections/hospitalizations Noah is having. We are having to move his IVIG to every third week instead of every fourth week, and while we are glad to have this resource, getting IVIG means a whole day in Greenville with gas, meals, time away from home, etc. If going every third week doesn't do the trick, we will have to administer IVIG weekly at home. The home IVIG can't go through his line so we would have to stick him each week - yuck. We are also going to start ethanol locks, which means that we will lock (fill) his line with sterile ethanol when we unhook his TPN, then draw the ethanol out before restarting. This shows a lot of promise in terms of avoiding line infections.
Mr. Busy Britches is just going too fast for me to stay on the computer, so I'm going to go. I'll update as soon as I can after surgery tomorrow, but if he is clingy it may be a while so don't worry if you don't hear right away! :-)
Blessings,
Kate
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Posted by Anonymous 
Posted by 
Posted by 
Nov. 24, 2008 - Prayers for the surgery tomorrow
www.caringbridge.org/ia/mitomomof9 (Asenath and Zipporrah)
http://www.freewebs.com/growingupmitodisorderinfo/