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May. 7, 2009
So very sick
Noah is very, very sick. The high fevers are continuing. His labs keep getting worse. He is still having episodes of horrible, violent retching, heaving, and vomiting bile. He is spending most of the time lying in bed. He dozes off then wakes up then dozes off again, but seldom does anything to let us know he is awake. He just lies still. He does have some brief, extremely subdued times of interacting with his environment, but they were shorter and less frequent today than yesterday.
Last night he started bleeding from his g-tube. He is still oozing blood today. He started crying while the nurse was trying to clean him up, so I just started stroking the other side of his belly to comfort him. You mamas know that you know your childrens' bodies as well as you know your own, and I was quickly struck by the fact that his belly felt *wrong* to me. The nurse confirmed that she could feel a soft but solid mass in his belly. Surgery was consulted today. A surgical resident has been by and confirmed that there is *something* there. It appears that Noah's liver is very enlarged and pushed out of place and that there is another mass of some sort on top of his liver. The enlarged liver could have displaced a loop of bowel. There are many possible scenarios here and we just don't have enough information right now. The surgeon who has done all of Noah's belly surgeries is in surgery right now and they want him to come up and look at Noah as soon as he can get away. Noah's anatomy is very atypical and this doctor knows Noah's gut more than anyone else.
A third antibiotic has been added to Noah's regime. It's one that covers gut infections.
There is just so much going on right now and so much of it is NEW for Noah. He's never had his liver this displaced. He's never had a mass in his belly. He's never had abnormal liver labs. His blood sugar keeps falling - that's new too. He's never had this kind of vomiting. He's never bled from his g-tube like this. He has never looked this bad - pale, often unresponsive, shaking at times, randomly screaming/sobbing about how he doesn't "like it," etc. When he is awake and alert, his eyes look so very, very sad most of time. I told the infectious disease doctor that I've often known there was cause for concern, but that I've never been so terribly scared before. She told me that yes, she had never seen him this sick before.
Something is very wrong and we have no real idea what it is. The pediatrician told me again today that we have to try to continue to stay the course and wait for this problem to declare itself. I just don't know how long we can wait. Even after days of fighting horrible infections, Noah's never looked this bad. He has certainly NEVER come close to this level at the beginning of a fight. I'm terrified by the thought of him getting worse.
He is just so little, and he has fought so hard so many times. No toddler should have to be strong or be brave. I want the hardest things in his life to be picking out what crayon to use next or trying to talk me out of an extra cookie. I'm just so scared for him. Even as I know and I see the presence of God and His blessings, and even as I can feel peace at times, there isn't any way for this to be easy. It hurts so much to see him like this. I didn't want to fall asleep last night because I just wanted to keep holding him and watching him breathe. I just want him to be better. Please keep praying for him. Pray for me too.
Kate
*** Another surgeon just came in. He seemed concerned about Noah's liver. They may try to get him in for a CT scan tonight (great test, but Noah is a POOR candidate for sedation) or an ultrasound tomorrow, or both. The nurse also came in and drew more liver labs and more infection labs. If his liver is starting to go because of the TPN, I don't know what we will do . . . we don't have private insurance anymore and Medicaid won't pay for the one experimental product (omegaven)that can prevent TPN-related liver disease . . .
*******The surgeon who was just here has spoken with the surgeon who has done Noah's surgeries. They want a CT scan NOW. He'll be heading down as soon as they can arrange it. |
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May. 7, 2009 - PRAYING FOR YOU ALL....