All clean and bright-eyed for the camera!
Getting all clean in his first bath with Mom and Dad!
Gabe in his new fancy crib!
Sorry it has been so long since the last update.
We were trying to get him weaned from the CPAP. He was 6 hrs on CPAP, 6 hrs. on high-flow cannula for a couple of weeks. Then last week it seemed like he was ready to alternate 8 hrs. on high-flow, and only 4 hours on CPAP. Well, it didn't last long before his CO2 levels skyrocketed and he had to go on CPAP full time. Unfortunately. It has been a hard road since then. He hasn't been able to come off the CPAP since. When they try high-flow for even a short time, his CO2 goes into the 90s.
Our amazing doctor this week was considering steriods, but she wanted to get a cardio echo to make sure nothing was wrong with his heart. The cardiologist found that he has pulmonary hypertension which is when the heart is stressed and it constricts the heart. He has this because of his chronic lung disease, but this prevents his lungs from getting better. They work against each other. Therefore, they put him on nitric oxide (not laughing gas) that is supposed to relax and open up his heart.
Then they thought he had an infection yesterday because he was really pale and higher CO2s. This turned out to not be the case.
NOW! they are starting him on a high doseage of hydrocortizone for almost 2 weeks to try to get these lungs better. The doctor wanted to stay away from the steriod they used to get off of the ventilator because it has some neurological side effects, especially in the brain. So we are not expecting results right away like we saw before.
PLEASE PRAY FOR THESE TO WORK WITH NO SIDE EFFECTS!!!
Thanks guys SO much for the update!! I know I have seen his new pics already but I enjoyed seeing them agian. He is so dang cute, hoping to get up there soon for another visit!! As always the 3 of you will be in our paryes!!! Hopefully his meds will start working soon and do nothing but make him stonger and healthier!!
ReplyDeleteLove you all, Steph
We're praying for you guys around the clock. I hope that all the meds they have him on work smoothly and effectively. He's such a little trooper. Love the updated pics. I showed the kids of him when he was born and showed the ones of him now and they were like "Oh my gosh... he's so much bigger!" He's so adorable and totally has your nose Shannon. :o) Thank you for updating us!
ReplyDeleteLauren and Family
Mark and I are praying! Gabe has grown so much!! What a cutie. :)
ReplyDeleteHey Dan! I opened our blog up temporarily again so if you want to go back and read from my June entries (under "Jack's Life") you can kinda see the process we went through, some things are different as far as treatment- I realized after we hung up on the phone that our cardiologist said that there didn't appear to be pulmonary hyptertension as of a week after his birth, and looking back on his diagnosis sheet, I realized he had pulmonary hyPOtension. Sorry about that, I told you wrong. His techhnical diagnoses were: anemia, supraglottic stenosis, meconium aspiration syndrome, thrombocytopenia, hypotension, and sepsis. The only one that hasn't resolved yet are those relating to his throat. And we were on lasix pretty much the entire NICU stay- we thought we'd go home on it, but they weaned him off it only days before we were discharged I think. So far no side effects that we really notice from that as of now, so be encouraged!! We'll talk soon! Praying for you guys. :)
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