As much as we were excited that this was something they found that worked, I was also annoyed because he really didn't seem to need the oxygen as much as the flow; however, they did not quite have a high flow system for the home yet so this is what needed to happen.
Based on this new flow, they wanted to see how it would affect his sleep apnea and to make sure nothing else would come apparent when at home, so we performed one more sleep study. Our poor little man had already been through two and would now need to be covered in wires once again, but hopefully the risks would outweigh the benefits and it would give us extra information. But of course...in true fashion, Cohen showed no more changes, which we were happy with.
Last Thursday (we've been home for 6 days now and trying to get past our popular 9 day home stay) we were discharged from the hospital for the third and hopefully FINAL time for a while at least! It was again a traumatizing experience getting this fragile man to and from the hospital and then setting up the equipment that he would need for the high flow system (shown above). But he must have felt bad for us because as we finally settled into bed around 11:30pm, he slept all night!
The past 6 days have been so relieving and comforting, even though often chaotic! We needed this break at home to spend time as a family, make memories together and enjoy each others' company. We have cuddled, snuggled, kissed, hugged, cried and cried some more!
Tears of happiness to finally start our life together, but also tears of fear and sadness of the diagnosis that has still not been given and the fate of our child. We are technically homebound right now since he is on this new system, but have approval from his doctors to venture out of the house a few hours/day on a regular oxygen tank to go to doctor appointments. This has been the hardest part in all of this. Living in a new home with two stories (Ryan's dream come true) and not even able to share experiences together as a family because one of our children is hooked up to two machines upstairs is very upsetting. We have been trying to make the best of it though and are looking into getting a second system and trying to get insurance to cover it for downstairs so we can have a bit of normalcy if we do have to stay indoors for the short term. Trying to explain to Isla and her spunky two-year-old mind that going downstairs is not an option all day long is frustrating and upsetting. We take turns going downstairs with her because she really does love playing down there and are working on a schedule for that.
Looking forward to his pediatrician appointment tomorrow and hoping for good weight gain!