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May. 12, 2009
Thinking about home
****** I wrote this post yesterday (Monday), but things got crazy here before I could send it. I've got new info that I've added to the bottom of this post.*******
This morning the idea of going home was discussed for the first time since we came in! We aren't ready to go and it will be at least a few more days, but I'm blown away by the fact that we can even discuss it already. Noah's strength and resilience never cease to amaze me.
Again, like yesterday, Noah looks a bit better and his CRP is steadily going down. That is good. All of his other labs are, well, not good. We ran his lipids (fats) at half the normal rate yesterday because he NEEDS those calories, but his triglycerides shot way up last night even at that half-rate, so we had to take the lipids down. His white count continues to drop as does his red count, so he's been typed and cross-matched for a transfusion this afternoon. Liver is still big, spleen is still enlarged, some electrolytes are out of whack, liver enzymes are still up blood sugars ping from high to low, etc.
I'm now going to make a profound, medically complicated statement. Ready? These crazy labs either ARE the result of the infection or they are NOT the result of the infection. How is that for a moment of sparkling clarity?
Seriously, though, that is all we know right now. There is a syndrome (which I cannot pronounce much less spell) that can accompany serious infections and cause all of the above listed things (including the anemia) to happen. Mitochondrial disease progression could cause at least some of it. TPN intolerance could cause at least some. Basically, if it all goes away and gets better, then it was the infection. If it doesn't, then we are looking at a much more complicated medical situation.
We have to take this infection very seriously. Noah can't afford a relapse. Unless some new viral study comes back positive, he will probably be on IV antibiotics for another month. We will also probably need to run some IV fluids every afternoon when he is unhooked from his TPN each day from now on. This should help with his fluid balance and electrolytes. Doing multiple IV antibiotics is always a challenge at home, especially for this long. Everytime we run an antibiotic or premedicate with benadryl, we have to turn off the TPN. This means that it takes forever for him to get all of his TPN in, and he is pretty much hooked up to some IV or another around the clock - one day's TPN finishes just in time to start the new bag at night.
Those of you who know us outside of the hospital know that we are used to IV pumps and that we've done our best not to let Noah's medical needs slow him down. He enjoys going places and doing things, and if that means that we're hauling around coolers of drugs and switching out pumps on the go, then we do it. On the other hand, when he is running things 24/7 it DOES make a big difference. We don't let him play in our heavily wooded yard until he is unhooked each day - it is just too easy to snag a line on a branch or stump. There is a greatly increased risk of snagging a line even inside when he is on IV antibiotics- every broken line he's had has happened when he was hooked to something other than antibiotics. While he is amazingly adept at keeping up with his pump without tripping or getting tangled in his lines, sometimes he just gets tired of dragging his pump everywhere, and that frustration level skyrockets when he doesn't get a break each day. We don't use a backpack because doing so would create a "loop" of tubing that is more prone to catching and snagging, but we may have to rig something so he isn't carrying stuff all day.
Add to that the fact that these drugs are run around the clock with one set due at 3 AM. None of this is meant by way of complaint - we are THRILLED that we have the blessing of being able to do home IV antibiotics! I just wanted to explain our concerns a bit so you would know how to pray.
To be honest, at least for a while he might not be strong enough for the pump concerns to be an issue. He is having some periods of GREAT playing and even sat propped with pillows painting earlier. He has times when he is moving around his bed or getting out of it to walk somewhere else in the room, but he fatigues VERY fast to the point that he needs help sitting or picking up toys. Again, only time will tell how much of this is a new normal and how much will go away.
Again, if you haven't read about our Prayer Warrior Wall project, please read the post from Saturday. We would love to have all of you participate!
Closing with another Noah funny: Noah doesn't do well remember to use the word "for." "Open it for me, please," becomes "Open me please." He's been playing in bed with some Little People toys (he LOVES Little People) but couldn't get one of the people into the car. He promptly started yelling, "Fix me! Fix me please!" If only he knew . . . .
***** Updated info*******
Noah had a reaction to his transfusion yesterday. His blood pressure fell from 131/85 to 80/40 within a few minutes after starting the blood. He quickly started swelling in his hands, feet, and face. He became extremely pale with lips the color of his face and developed dramatic dark circles under his eyes. His voice got very, very hoarse and croaky. It took a couple of hours to get him stable and heading back toward normal. Honestly, it was pretty scary.
We are still waiting to hear from the blood lab. They should be able to tell us more about the reaction. He could have reacted to something IN the blood (a protein, for example) which just means it will be harder to find blood that will work for Noah. He also could have reacted to the blood itself, which would be really bad.
He is still a bit pale and puny looking this morning - definitely more subdued than yesterday. Most of the swelling is down and his voice is a lot betterl. His blood sugar is still all over the map so they will be doing finger sticks throughout the day and night. :-( We don't have his triglycerides from today yet, but the current plan is to give him verrrrryyyyy small amounts of lipids every other day while we watch things closely. If he doesn't get the lipids, he won't get any essential fatty acids or fat soluble vitamins. If this doesn't clear up fast, it will be a real trick to keep his triglycerides at a safe level while getting him enough fats at the same time. Little Enigma Boy was characterized this morning as "completely out of whack - and we don't know why." At least he isn't boring . . . . :-)
Blessings,
Kate |
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May. 12, 2009 - Untitled Comment