Yesterday everything was set for discharge. We transitioned Gavin from the hospital's bi-Pap machine over to out ventilator we will be using at home. He did have some difficult going onto the home vent because we are not able to give him as much O2 as what the hospital can give. On 4 liters he was struggling to stay above 90% O2 saturation in his blood.
After a few hours he seemed to settle into his new machine so we signed our papers and headed home. It was a long ride. Gavin was very uncomfortable and he desated most of the way home. Once we were home his O2 was up be he was just very agitated and uncomfortable. Our nurse arrived and it just kinda went down hill from there.
We were totally overwhelmed once we got home. Gavin is on so many IV medications and infusions that it can drive even the most skilled doc or nurse insane. Our nurse was helpful but I was still feeling a little uneasy about everything, plus have a ventilator now that he is completely dependent on is very scary.
I finally went up to bed and a few hours later Gavin's nurse woke me up to say he was shaking and was breathing very fast. I came down to find the all to familiar presentation of "sick Gavin." At first his temp as still very low so I wasn't too concerned and just called the doc to see if we could give additional meds to make him comfortable. A few moments later he was getting worse and his temp was way up.
So we all packed Gavin and I up and headed out the door and back here to duPont. Gavin is doing better, temp is down to a low grade fever and his breathing is much better as we are giving him more O2. I'm not sure hoe I'm feeling about all this. I felt very panicky at home wondering what they heck was going on in his little body and wondering if this could possibly "it." Now I'm feeling a sense of relief as he is now looking the same as prior to leaving the hospital. I feel an odd sense of comfort being back in these walls. It's so safe here right now. Anything out of the ordinary and the docs come running. I really want to get home, but I want Gavin to be ok at home.
It's all just a mess. Nothing is working out as planned. I just want to be together as a family in the new house.