The weekend of monitoring went well. Isaiah's co2 level stayed in a safe range so he's now off that monitor.
The doctors are officially weening him off of his morphine. (Yay.)
He's no longer working as hard to breathe, so he's finally back to gaining weight; the staff is lowering his feeds that we're giving him through his ng tube to avoid him gaining too much too fast. (Because of the machine Isaiah is on for his breathing, he can't breast/bottle feed so for now he eats through his tube. The pressure from the machine could cause him to aspirate- aka his food could go into his lungs and we don't want that).
Today we went for a walk through the hospital and its courtyard (outside!!) in our cool new stroller (thank you so so much scs/cohs friends!).
We were testing the portability of the machines he's on now.
Everything worked beautifully and Isaiah loved the fresh air.
Yesterday the representative from the oxygen company came back to teach us how to use all of Isaiah's new equipment. He has the Trilogy machine that is helping him breathe, a suction machine to clear his airway when needed (that booger bulb doesn't do the job), and a compressor for a nebulizer (he gets two treatments a day to strengthen his airways).
We'll be seeing a lot of the staff of the oxygen company. They'll meet us at our house when we get there and will be stopping by every day to check in. After a week their check ins will be weekly and then monthly.
We're really looking forward to being home again. We are officially lifting the visitor ban but there are some "rules" we need visitors to follow...
1. If you plan to see Isaiah a lot, please get your flu shot. This is something the staff here is very adamant about so we are too.
2. If you have the slightest symptom of a cold, let's reschedule your visit. If Isaiah gets even a small cold, he could possibly go back into respiratory failure. The smallest thing could turn into something huge for him because of his history (wow, a 7 week old has "history".)
3. Washing hands/using hand sanitizer is mandatory when entering our house and touching Isaiah. Don't worry, Dave's dad got us huge amounts of purell at Costco. (Thanks Pop!)
It's funny, we always said we'd be laid back parents...but then our son turned blue and was close to being on a ventilator...our eyes were opened. We never ever want to see our baby in that state again and we will do everything we can to avoid his having difficulty breathing, even if we want to roll our eyes at ourselves.
In my mind we almost lost him before he was even born with that type II diagnosis and I feel so extremely lucky that he is here with us. We'll take the big clunky trilogy machine. We're good with the oxygen. We aren't big fans of the ng tube...but in all honesty, we'll do whatever it takes to keep our son alive and happy.