A glimpse of a child's battle with a rare degenerative disease and the legacy he left behind
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Monday, June 11, 2012
Monday
Ry had a good night's sleep with daddy, but early this morning he started vomiting again. He's been placed on continuous venting for now. After such a great day yesterday, it's a little disheartening, but doctors continued monitoring today and options will probably be discussed tomorrow.
Sunday Funday
Hi guys, it's Auntie Jen. I'm going to keep you all updated for a little bit the best I can. Ry is still in the PICU (ICU for pediatrics). Today is day 8. He had his PICC line placed Friday morning and it seems to be doing wonders. He was extremely uncomfortable with all the pokes he was getting last week. Friday evening his GJ tube was placed. If I remember right they began feedings through his tube at 5ml (which is about a teaspoon for the day) on Saturday. He seemed to be doing OK with it until Saturday evening...he threw up again (this time it was a dark color). Sunday, since Ry's stomach is only processing 3%, the nurse showed Denise how to "vent" through his tube. Every third hour they are draining the contents (which is mostly bile & acids) of his stomach. He's still having difficulties swallowing, so he has a little suction tube that he his learning how to use on his own. It's just like the one at the dentist. X-rays show he has another blockage that is close to his rectum, so they gave him an enema to see if it would break up. Shortly after we had a mess on our hands ;) Although it didn't seem to really break everything up. They continued his feeding throughout the day and he's up to 15ml as of last night. Although he is still receiving his nutrients through the PICC line, it's good news that he was handling a little more through his GJ tube.
It was great to see Ry in a pretty good mood all day Sunday...lots of smiles and giggles. He really enjoyed spending time with all his visitors and a little time outside in the play area. All-in-all, it was a good day :)
It was great to see Ry in a pretty good mood all day Sunday...lots of smiles and giggles. He really enjoyed spending time with all his visitors and a little time outside in the play area. All-in-all, it was a good day :)
Ry & his new friend Baxter. Thanks O'Brien Family! |
Going for a stroll |
Getting in some batting practice |
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