feeling green around the gills

Whoa, I almost missed a day of NaBloPoMo and I don’t have any photo for this post.  Uncool.

A few months ago, Corrigan was almost constantly nauseated.  His metabolic team made an interesting discovery and they made some dietary changes and his vomiting instantly ceased. As in the day we made the change, he felt back to normal.   For two months we have been puke-free, except for the one car sick moment he had in September, and it’s been such a relief for him.

Corrigan has a regularly scheduled checkup in Baltimore tomorrow and wouldn’t you know it, out of the blue he vomited his entire dinner volume yesterday.  It is always really important that he get optimal nutrition, but even more so in the days leading up to a clinical appointment because his labs give a snapshot of him, metabolically, and they make precise adjustments based on those numbers.  If he doesn’t get all of his protein and calories in the days prior to his checkup, they will see wonky numbers and could make adjustments that might not be necessary if his less-than-optimal nutrition issues were only temporary.  Of course they ask about these blips and I keep a journal.

If he is getting everything required, has been healthy and certain labs come back lower than normal, it could indicate a growth spurt, or a need for a little boost in protein.  But if he has had a few nauseated days and hasn’t been getting what he needs, and they see those numbers are low, we are then not getting a good snapshot of his needs and it could mean more trips back down, or they could change something and it could be too much once his nauseousness passes.

It is just tricky, so when he started feeling digestively shaky last evening I was concerned, but he has had no appetite today and again vomited his evening formula almost precisely the same time as last night, so now I am worried.  From the volume I am seeing vomited back up, it looks like his stomach is emptying slowly again and it seems that his stomach is full of mucous which is odd, he hasn’t had any cough or runny nose.  This kid….I tell ya.

We figure one thing out and then something else pops up. I am thankful his ammonia has been stable for almost a full year now, but we have lost nearly every bit of ground we ever had with eating by mouth.  He is 99% tube fed at this point and even touching certain foods makes him gag. His aversions are not improving at all and I can’t say as I blame him when he goes through these vomiting spells.

Poor pickle.

 

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