PICU Day 7

Day 7 already...has it really been a week?? Feels like a lifetime ago that we left Florida, and yet it seems like just yesterday. I finally have my computer back, so you all have to read my ramblings now instead of Brad's...I will try to update more regularly.


Where to even begin...how can I even start to put this past week into words...definately one of the most difficult weeks I have been through...so disappointing to have the trip turn out this way. I had such high hopes...but, as we have been reminded once again, "the best laid plans"...We did have a wonderful first week, even though Noah was never great healthwise and wasn't able to enjoy everything as much as I had hoped he would. There were great, amazing times...I know there were...they are just very difficult for me to recall right now. I hope that once things calm down and we are home again, that I will be able to post pictures and write about the good times. But I think it will take me a while to emotionally work through all that has happened. Right now the disappointment and the emotions of the past week are still much too fresh.


There is much to be thankful for today...I am thankful that we were able to have 9 days together as a family in Florida...I am thankful that Kailyn & Joshua were able to have a wonderful holiday and be absolutely spoiled...I am thankful that we were able to get Noah home, where the hospital knows him, where we do not have to worry about insurance issues. We could be stuck in Florida right now in PICU. So thankful to be here. Thankful to have made it through an absolutely gut wrenching plane right home. Many miracles happened that day to get Noah back home. I honestly did not expect him to make it...he looked very, very bad on the plane and I was already planning how we would get his body home and everyone back for a funeral...it is an absolute miracle that we made it to the ER. Thankful that we were able to get flights so quickly...the last 2 tickets on those flights. Thankful for the angel I met on our first flight...the man sitting in seat 20F on that Thursday afternoon flight to Minneapolis, who helped me through the flight and off the plane, who gave me the hug I so desperately needed. Thankful that our portable oxygen lasted until we got to the ER. Thankful for Kim, who met me at the airport and got us to the ER. Thankful that Noah is now where he needs to be.


As for today's update...Noah is looking better today. He is still needing continuous CPAP and ventolin masks every 2 hours. RSV and asthma exacerbation was the diagnosis when he first came in, and he was sent immediately to PICU. After multiple masks, with no improvement, he was started on CPAP, which calmed him almost immediately. So he actually looked pretty good on the weekend. Then on Monday he developed a significant pneumonia in his right lung and started looking quite bad. His gases were getting worse and it was looking like he would end up intubated. However, he seems to be slowly settling out again and today he was more alert and sat up for a few minutes here and there.. Thankfully, he loves his CPAP, so we have been able to avoid intubation. And so now we continue to sit tight and wait. He has shown that he is still not ready for any weaning...hopefully in the next day or two we will be able to start. His blood pressures have become an issue lately and he is quite hypertensive. Right now, we are not treating it, but hoping that it will settle down on it's own as his health improves. His Gtube stoma has also become a huge issue, with prolapse of the stoma that will need to be surgically repaired, and constant leakage that is causing major skin breakdown. And to top it all off, he's got a very itchy yeast infection in his groin. Needless to say, he's still a pretty miserable little guy.

Thank you all for your many prayers. Please continue to pray for patience as we wait this out. I am exhausted and just so very anxious to be home.