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Kids' Health Kids' Health

Flying across country update :)

Posted by on Apr. 28, 2013 at 1:50 AM
  • 5 Replies

I am sorry it has taken me so long to update. As you can imagine it has been crazy around here! The trip went very well! The hospital, OUTSTANDING! They were just too kind, loved the dr and loved the staff! Loved everything about it! 

We had a gastric emptying scan on Tuesday and it actually came back really good, however that night Ty got super distended and has stayed that way since. His last gastric emptying scan came back terribly severe, so to see that it was better now is really great, although we think they may have just caught him on a good day cuz since being home we are having issues with his stomach holding contents for over 5 hours (not normal at all). Wednesday morning we met with the motility doctor and he went over all the testing with us and told us that even if the testing comes back normal right then, it doesn' tmean that later it won't be abnormal. Especially with Tyler being probable mito (they believe he has a disease called mitochondrial disease, basically an energy starving disease and causes a ton of problems which they believe is the root of all his medical conditions), it's common for mito kids to be normal one time and abnormal the next. During the appt the dr felt Tyler's tummy and could feel he had hard stool stuck in there and took dh's hand and had him feel it. By all means, with the amount of meds he takes for bowels, he shoudln't have that in there. So they admitted us after the appointment and started golytely through his gtube (feeding tube in his stomach). He was then NPO which means no food and he stayed that way until Friday. He actually wasn't that grumpy! DH and I ended up sleeping through the night at the hospital so the nurses cared for his diaper changes (we never sleep at the hospital but we were exhausted apparently and the staff was so awesome).

Thursday was a big day. They put him under for 2 hours and did an upper endoscopy and colonoscopy and they took a ton of biopsies and then placed the cathetere for the manometry testing. That's the longest he has been under for us so it was a little nerve wracking. His scopes looked great, the best they have ever looked. We also got a pic of what his gtube looked like from the inside (kinda kewl). There was some discoloration and something else minor but overall good. When he came out of anesthesia his body temp was low. By the time we got there he finally got up high enough to go up to his room to be monitored (96 at that point, it had been lower) but they were concerned cuz his heartrate was dropping real low. The lowest they saw it go was 38 and we have never had that problem. So he had to stay on monitors through the next day. Tons of beeping fun, ha! 

Friday they did the manometry testing which lasted 6 hours. They gave him erythromycin via IV to stimulate response from his stomach. Then gave him octreotide through his IV which I believe stimulates his small intestine and then they gave his biscodyl through his catheters in his colon to stimulate the colon. For a half hour he got to eat but since he can't eat enough in that sitting they also fed him via a foley catheter through his gtube site to see how his body reacted to teh food and pushed it through. The biscodyl obviously made him poop and he had quite a bit of blood, more than they normally see so they kept us an extra couple hours but I convinced them that we would call or come back if things got worse. Our hotel was literally 5 minutes away and we weren't traveling til Sunday. So they let us go. I ran into the dr in the hall and he asked about everything and I told him and he assured me it was normal but since he wasn't the floor dr, he coudln't approve us going home, so I had to beg, haha. 

Saturday we went to the zoo and had a free day of fun which was greatly deserved! Tyler got to pet a pygmy armadillo and an alligator and goats. 

We should get the results like any day now! Will probably update when I can when we get those. :)

Here are some pics:
His gastric emptying scan
 

This was after a bath before his scopes:


These were the bags holding the catheters for the manometry testing. He had tubes coming out of his gtube site and out his bum:

They had his gtube site taped real well so the probes wouldn't come out: (pic is upside down)

 

This is him hooked to the machine measuring how his stomach and intestines contract and move things through: The machine kinda in the middle but more to the right is the manometry testing. The blue things are the probes in his stomach and small intestine, the red ones are the ones in his colon
 

by on Apr. 28, 2013 at 1:50 AM
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Replies (1-5):
Cafe AmyS
by Head Admin on Apr. 28, 2013 at 11:36 AM

What a cutie! It sounds like the zoo was probably just what he needed.

TigerofMu
by Sonja on Apr. 28, 2013 at 2:10 PM

He looks like he is in pretty good spirits.  I'm glad that everything went relatively smoothly and that his heartrate straightened out.  Also very glad you got to have a family fun day and spend some time at the zoo!

PrincessZ20
by on Apr. 28, 2013 at 6:09 PM

I'm glad it went well!  I hope the results come back with some good answers for y'all!

TerriC
by on Apr. 29, 2013 at 2:04 PM

I am so happy things went well, so much for the poot kiddo to deal with and you guys too.  Glad you were able to enjoy the zoo with him!

karamille
by on May. 2, 2013 at 10:14 PM

He looks like he was good sport thru it all.  Hope you get some answers soon!  :)  

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