The first night at the PICU was ok. Logan had 4 desaturations (2 in the 20s, 1 in the 60s and 1 in the 70s) during deep suction. Deep suction was when they tried to put a thin suction tube in his nose all the way down to his throat to suction the mucous out of there. He didn't like it very much (of course, who would ?!?!) and when he's upset, he decided he didn't want to breathe and hold his breath. He was like that when he's younger, just hold his breath when he's upset, and now he's doing it again. Aside from that, I think he was fine.
During rounds, it's been decided that we would slowly feed him formula again instead of using IV. When I was there, I fed him some pedialyte, just to see how he took it. He took it fine and the next round of feeding, he should be taking normal formula, and no more special fortified one as he's getting chubby. A nutritionist will see him soon to confirm that he doesn't need the special 24 cal formula anymore and can have normal 20 cal ones.
Since the oxygen set-up at the hospital was a little different than at home, I asked how much oxygen he is using currently, compared to the 3/4 L that he's using at home. It seems like he's not using that much higher oxygen content, it's just the flow of air was stronger. As he's been doing ok, they decreased the flow of the air, and hopefully he would do well. He's also starting breathing therapy, by having a nebuliser emitting medicine so that he can breathe in the medicine to loosen up the mucous in this throat. While they're doing that, they use a rubber thingy to pound on his chest and back to help with the loosening of the mucous.
The PICU doctor said he would contact the neurologist to get more information on Logan and to see if there's any further testing that she would like to do. Santa Clara Kaiser has another Pediatric Neurologist, and I might meet with him as well, just to get a second opinion (it doesn't hurt to do so since Logan is there anyway). I might also consider him doing a muscle biopsy, after getting all the details about it. All of his tests came back negative (including the recent flu virus and RSV), and we still don't know what causes the hypotonia and the central sleep apnea. I am hoping the muscle biopsy can shed us some light. At first I didn't want Logan to get it, as it sounded really painful and I didn't want him to go through another test, which the result might come back negative as well. But with this hospitalization, he might as well do it since he's there, and if we can find out what's wrong and treat it, we don't have to go through this every time he gets a cold. We all know that babies get 8-10 colds a year!
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On a different note, we will be finalizing the paperwork for Aidan to go to preschool tomorrow. This is going to cost us an arm and a leg every month, but it's necessary. This branch of CCLC that we have selected is in Downtown Palo Alto and our friend's kids go there as well. The preschool is more along the way for Hank to transport Aidan everyday, and they close at 6:30 p.m. instead of 6:00 p.m. It is expensive, but he's getting too old to stay at the family day care. He needs to hang out with kids his age and to learn more. We're hoping he can start on March 2nd.
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