Jake had a pretty good day. After dialysis, they removed the venting tube out of one nostril, and later in the day he "accidentally" yanked the feeding tube all the way out of the other nostril. Therefore, we can now see his pretty face unencumbered by tubes. This makes him look much less sick, and the lack of tubes in his throat raises his voice above the whisper level (to somewhere between throaty whimper and hoarse whine).
He's still got some kind of infection which makes him generally uncomfortable. In addition, his tummy is excruciatingly painful. He has a fever, which saps his energy. However, he's well enough that the medical staff has suggested that we have to start parenting again (i.e., saying "no" once in a while and making him comply with bedtime). Since we haven't said "no" for a month, we have to start very slowly so we don't strain a parenting muscle.
Today he demanded pizza, and we complied. He's been able to digest most of the different kinds of solid food, but he cannot digest the formula they tried to put in the feeding tube (which led to him pulling it out).
Unfortunately, people keep stealing our food out of the ICU community refrigerator. It's very difficult to explain to him that he can't have the chocolate ice cream that he knows was delivered at dinner time, and he can't have the leftover pizza he remembers. If you bring us food, please mark the container with "stool sample" in big letters. Maybe that will work.
We still hope to move to the rehabilitation wing this weekend. His various physical therapies are going well, and we're excited for him to soon be able to accept child visitors in the rehabilitation playroom. The patient rooms in the rehabilitation wing are brand new. They have flat screen TVs in each room, although the hospital doesn't have a high definitionTV signal. This means the picture looks even worse than usual. I guess it was a good idea at the time.
No change in the kidney status. We've been advised that some specialists recommend allowing as long as a year for kidney function to resume before attempting a transplant. Our goal is to get him well and strong so we can go home. We presume that he'll be on some form of dialysis regimen for the summer. Even if the kidneys start to kick in tomorrow, we expect that he'll be on supportive dialysis for a while.
It's been a scary day in the ICU, because there are a lot of very sick infants. It reminds you that each day of life is a precious gift. Go hug your kid(s).
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Keep up the good work, Jake! Wow. You pulled the feeding tube out?! Is that to make sure you keep getting the "good stuff" -- Gushers and pizza :-) We'll make sure you get more of what you love. We will also make sure to send over to the ICU community kitchen our Attack Cats, Nigel and Suki-Suki, to protect your goodies. They may look like slackers, but they are devoted to you.
I hope they figure out quickly what is making your tummy hurt so. I'm terribly sorry. Give Mommy and Daddy our best. They are so amazing. If we ever need advocates, could we borrow them from you for a bit?
xoxo
Camille, Paul, Gianpaul & Giuliana
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