Update on jadyn

[Momi2AntnJadyn]

We are still in the PICU, but things are looking better at least. The vomiting blood has not happened again, and they have been testing her stools and stomach contents for blood, with negative results. The G.I. doc said that she may have just torn something from "wreching" so much while being sick to her stomach, and that's why old blood and clots were sitting in there. As far as the PVC's she was having, they have gone away. They said that it may have been just because her body was under so much stress from being so sick and having a high fever, and also because she was getting albuterol so frequently when she usually rarely requires it. Neuro seems to think that her shunt is working okay, and I have a feeling that it is also. She has not been interested in eating since last Wednesday, but all day today she was STARVING and they would NOT let her eat. So she was basically crying all day, it made me feel soo bad. But they tried her off the ventilator for a bit today, and she had a bottle and she ate like she was starving LOL. She had another one later on in the day. After that, she was put back on the ventilator since her being off was just a trial. She was on the ventilator with a rate of 22 and 30% o2, just like she had been, but she kept desatting... they kept bumping her o2 up until she was at 50% and she was still desatting, she just stayed between 80 and 85. So they called in the docs. and everything wondering what to do. They said her lungs sounded better than they had before, so they didn't know what was causing it. Her nurse messed around with her pulse ox probe and the next thing ya know the thing was reading 95-100 again... but the docs. are still convinced that she may have reacted in a bad way to being fed and being off the ventilator and they won't let her eat so she is SOO mad again!! Ughh I hate the hospital. She is NOT happy AT ALL, but I think she is getting better... I just wanna get out of here!!

[Melisande]

I hope Jayden gets to feeling better soon. My son who has CCHS has gone through periods of time when he's been sick that he's needed more O2 and ventilation. I think that is a thing with CCHS kids as I've heard from other parents.

Now that he's older (knock on wood) it seems that these "breath holding" spells are the indication he doesn't feel well.

We'll continue to pray and look for updates. Take care!

[Whitney]

Amanda,

Thanks for the update. I have been thinking about Jadyn. I am glad things are improving overall for her and I hope you get to go home VERY SOON. I hope they let her eat soon... A hungry baby is an UNHAPPY baby. Alex does not miss his meals well .

Best Wishes,

Whitney