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Appt updates :(

Posted by on Jan. 21, 2014 at 4:04 PM
  • 18 Replies
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?
by on Jan. 21, 2014 at 4:04 PM
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Replies (1-10):
mandee1503
by Amanda on Jan. 21, 2014 at 4:18 PM
*hugs* we never had a picc line before. Glad the pedi is putting in for some good equipment.
dawncs
by Dawn on Jan. 21, 2014 at 4:40 PM

I love when appointments go good in some ways, but I also hate when the doctor is stumped. I go through it myself personally trying to find answers to some genetic issues on trying to solve them. At least, your doctor is willing to help you with what you need to help Ty which is most important.

Momof4AEMW
by Silver Member on Jan. 21, 2014 at 4:54 PM

HUGS!!!  So sorry you are heading back to the hospital!!

We had several PICC lines in the NICU with the kiddos, and a couple since.  They really just kind of look like an IV, but they thread into an artery.  They can draw blood from it or send meds/nutrition through it.  Hope all works out!!!

jjamom
by Michele on Jan. 21, 2014 at 5:31 PM
Sorry to hear about the hospitalization, but at least this time it sounds like you'll have some great support from his Ped!

My dad had a picc line after his hip replacement and subsequent infection and additional surgery. He had to have antibiotics through the picc line for three months. They taught my Mom how to do it all at home so that on the days that the nurse didn't come, she could do it herself.
Mipsy
by Chelle on Jan. 21, 2014 at 5:34 PM
Yeah me too. We kept laughing cuz she'd ask what else we needed to talk about so we'd tell her "well we are concerned about his safety in the car during the ataxia and driving the hour to the hospital" etc (our local hospital just sends him to his hospital by ambulance cuz they can't handle him) and she'd tell us they could get him a carseat etc so I told her we were just needy today, lol! But she really is great

Quoting mandee1503: *hugs* we never had a picc line before. Glad the pedi is putting in for some good equipment.
Mipsy
by Chelle on Jan. 21, 2014 at 5:39 PM
Yeah, we really do have a great team I am so thankful for

Quoting dawncs:

I love when appointments go good in some ways, but I also hate when the doctor is stumped. I go through it myself personally trying to find answers to some genetic issues on trying to solve them. At least, your doctor is willing to help you with what you need to help Ty which is most important.

Mipsy
by Chelle on Jan. 21, 2014 at 5:44 PM
Yeah we kinda thought we would end up hospitamized again, but never thought they'd do TPN. We figured just saline or whatever for a day or so and then back on feeds and out in like 4 days tops. E understand why, he's not really had much nutrition in a week or so.

Thanks for sharing with me your experience with the PICC lines


Quoting Momof4AEMW:

HUGS!!!  So sorry you are heading back to the hospital!!


We had several PICC lines in the NICU with the kiddos, and a couple since.  They really just kind of look like an IV, but they thread into an artery.  They can draw blood from it or send meds/nutrition through it.  Hope all works out!!!

letstalk747
by Joy on Jan. 21, 2014 at 5:46 PM

 keep us posted , i hope all goes well with  the hospital stay

Mipsy
by Chelle on Jan. 21, 2014 at 5:47 PM
Yes I love his pedi and his GI has written out the instructions and plan so there shouldn't be any issues with the on call trying to play hero. And our GI will be on in the hospital around the time Ty *should* be going home. So if things still aren't ok, I know she will take care of him.

My mom had a PICC for her chemo but only the last month or so before she died and I never knew much about it. I knew about her port though


Quoting jjamom: Sorry to hear about the hospitalization, but at least this time it sounds like you'll have some great support from his Ped!



My dad had a picc line after his hip replacement and subsequent infection and additional surgery. He had to have antibiotics through the picc line for three months. They taught my Mom how to do it all at home so that on the days that the nurse didn't come, she could do it herself.
Mipsy
by Chelle on Jan. 21, 2014 at 5:48 PM
Thanks, I will. Lots of down time I am sure ;)

Quoting letstalk747:

 keep us posted , i hope all goes well with  the hospital stay

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