Max's cultures came back yesterday and it turns out he had a cold. Not the typical cold, which is the sneezy/runny nose one, but another strain, so that explains why it didn't look like a cold. At least we have a reason, which is something we can work with. We were able to bring Max home yesterday afternoon and he has been keeping us hopping ever since. In our world home from the hospital does not mean he is well. It means his chest x-ray has cleared significantly and he is out of the immediate danger of a lung collapse. Max's anxiety and the risk of catching something else makes the hospital a double edged sword for us. He heals much better at home, but still requires the same amount of intervention that we were doing at the hospital. This means Aaron and I are performing full respiratory treatments every 4 hours and each treatment takes about 1 hour...you do the math. The downfall, however, is that we don't have an entire support staff right outside his bedroom door, which makes things a bit more stressful. Needless to say things are a bit hectic around our house...combine treatments with feedings, naps...not just for Max but for mommy and daddy too. Seriously, we could all really use some good sleep. Then there is the fear that Aaron and I will get sick, because we aren't very well rested.
So here was a breakdown of our first night home. We got home about 4pm...upon getting home we had to get Max a bath, clean all Max's equipment, wipe down everything and Lysol all the bags. Then we had to give Max a respiratory treatment. The treatment went pretty well, but while Aaron and I were eating dinner Max's pulse/ox went off and said that his oxygen was hanging out at 86 (normal is about 98). Aaron and I had to deep suction him. This is something we are not fond of doing. Basically we take a very small catheter (tube) and push it in his nose and get his to cough, so that we can get into his lungs (literally) and then use his suction machine to suck out all the mucus.Luckily, most of us don't need this because we can cough the yuckies (as we call them) on our own. It is a bit stressful, because you are basically cutting off their oxygen supply, so you have to be quick, and there is also the possibility of introducing germs into the lungs (this suction kits are one time use and sterile, but you are also working very quickly). After that Max fell asleep and it took about an hour for his numbers to come up. We think that it was a combination of factors that caused this. All the jostling from the transport home, the bath, his anxiety and the need for sleep made for a bad situation. However, it did loosen some stuff up and we were able to get it out. His next treatment was around midnight and I came into Max's room to find his night nurse completely stripping the bed. Apparently, the medicine port for his g-tube popped open and his feeds and belly contents had leaked all over the bed. So at 1am we were doing 4 loads of laundry and moving Max around. This was not the peaceful night I had envisioned. I actaully slept on an air mattress in the room next to Max and then went to bed about 7:30 this morning. Aaron and I get to take turns sleeping in our own bed.
Today was much better for Max. We are slowly making progress on his lungs. The attending physician in the PICU said we could come work as respiratory therapists at the hospital. I think I will pass on that. We are once again thankful for the support of the PICU staff at MUSC how make our stays much less stressful.