Long road ahead.

Thursday seemed like a very typical day. We did our typical things that we have been doing with out our nurse during the day. We had a typical evening. Bath time and bed time all seemed normal. When we went to bed i noticed sols oxygen levels low, 93, which isnt like him so i knew we needed to do coughs and suction. After doing those things he dropped his oxygen even more and it took a nebulizer treatment, many more coughs, and suctioning to get him back up. I called our hospital once this started happening. We had no inclination that he was sick, at that time no fever, cough, or runny nose. But i listened to his lungs and they were not good. The doctor at madison said we could go to the hospital now or wait and see what he will do, he guessed it was a type of aspiration pneumonia. We were both exhausted, both kids hadnt slept really long, i wanted to go to the hospital right away but i was also working on very little sleep so i knew i wasnt going to make the drive. Sol was now staying at 96 oxygen so we decided we could take shifts to see if we could clear this up at home. 2 am came and i went to check on him. He was 93 so i figured id do some coughs. When i took his vent off, though, he wasnt able to breathe at all. We had to do coughs immediately and he was not looking good.
I had already been paranoid and nervous after going to try to sleep and i guess that should have been a clue there that we should have gone to the hospital. I ended up getting sick to my stomach and letting thiago stabilize sol. But it wasnt working. He wasnt able to breathe and needed oxygen. When i talked to the madison pulmonary doctor we made arrangements that if we needed to go to the hospital we would call for an ambulance to transfer us to the nearest childrens hospital and madison would pick us up then and transport him to madison by ambulance. At that point that is what i did. I called 911, told them we needed to go to neenah. The ambulance driver didnt feel sol was stable enough to go to neenah so he took him to our local hospital ER.
It wasnt much help being there. The er doctor didnt really know what to do with him. She ended up asking me, if he gets worse what else do you want us to do because this is pretty much all we can do. You would be better off being at neenah. I knew that which is why i wanted to go there but at this point he was getting oxygen and we were keeping him stable ourselves. I didnt want to keep moving him in and out of these hospitals so we decided to have madison pick us up in waupaca and the pulmonary doctor told them what needed to be done.
At that point may was getting scared, me too, sol was managing so may and i went home to sleep a little before going to madison. Sol arrived at madison around 9:30 friday morning and was put in the pediatric intensive care unit. Xrays were consistent with aspiration pneumonia but i did notice he had a runny nose at the ER. He was treated right away and his day seemed to go ok. His night did not go ok. Around 1am he had low oxygen rates and everything they did didnt bring them up. He was put on 100% oxygen, his trach was changed, he was put on a hospital ventilator but nothing worked. The resident or doctor that was there tried turning down the oxygen and he could tell that it didnt help any so he assumed he had a plug in his lung. They started bagging him with an ambu bag and eventually that broke up his plug and he started to do better. His morning xray did not look good. His left lung had a lot of little collapses going on and his lungs sounded junky. We started doing neb treatments and chest pt on him every two hours to try to clear that up.
The next xray has shown to be better but night time continues to be rough for him. After talking with his pulmonary doctor yesterday she said she thinks it is a virus not an aspiration pneumonia but what needs to be done is to open up his lungs with more support from his ventilator not oxygen. We have gone her route and he did have a better night last night. He did have another plug early in the morning but they were able to get it out.  Today he has seemed to be pretty congested and working hard to break up all the junk in his lungs but he is in good spirits.
We have a long road for recovery here, probably at least a week hospital stay, maybe more, but as long as he improves to be able to come home. I wasnt so sure we would be bringing him home with us, and in still worried he will throw some trick at us but he is working hard to do his best to get better so i appreciate that little mr.