I'll start with his pedi. She's great. I love her! She's putting in for several different things, something to help keep Ty safe in bed, a special needs car seat to better keep him safe, and a harness to add to his stroller to help keep him sitting up and from falling over during another ataxia episode. She's going to talk with several of his drs about the ataxia and see if they can find a cause for it. I asked if she's seen any other kids with this like Ty and she said no. She said they've seen ataxia in other kids but they've been able to point out what caused it and it doesn't act like Ty's does. His are different and odd. Leave it up to Ty to stump drs. She said next time it starts to rush to the er and have them hook him up to an eeg asap so they can truly get a picture of what's happening when the episode is at its worst. We talked a bit about school, mostly next year and if she believes full day is an option and she thinks its best to only let him go half a day. So she said they will fill out whatever is best for Ty and work with his school.
Now the bad part. GI appt. Ty's lost 3lbs since last Wednesday. GI decided to admit him tomorrow (they gave us a choice today or tomorrow cuz they know we live so far away, they wanted to offer us time to pack) and they will start TPN which is nutrition through an IV. They are going to have him on complete gut rest for 2 days, then slowly work up his jtube feeds and wean his TPN. Dr said he'll be there for 7-10 days or so.
Our pedi was really great and told me to email her updates while admitted and if I feel we aren't getting anywhere to email her and she'll come over. It's nice having that support.
And to do the TPN they have to do a PICC line, we've never had one before. I know Darby's son has, does anyone know how they do it or experience with a picc?
on Jan. 21, 2014 at 4:04 PM