Roller coaster

I guess my heart and mind have forgotten what a roller coaster ride it is to have a baby in the hospital, especially a fragile baby such as Maksim. This morning started out great, so great that the doctor planned to discharge Maks this evening. He even got Norco set up to bring the oxygen and monitor to the hospital. We were ready to go!

Maks was taken off the vapotherm around 10 this morning, and initially he was tolerating it very well! His sats were in the high nineties for quite a while. As soon as he went to sleep, he started dropping, so we put the regular wall oxygen back on him, and that helped bring them up.

After just a couple hours of being off the vapotherm, Maksim started coughing again, and he was coughing a lot and bringing up a lot of mucous. The nurse and I were constantly suctioning him because he can't expel it on his own. Around 5 tonight, he had a very scary coughing fit that included vomiting up a lot of mucous. The coughing lasted several minutes, and it was like he just could not catch his breath. It was very scary to see him like that. I finally got him calmed down a little, and immediately his sats were dropping and his lungs were full of fluid. The doctor and respiratory therapists were concerned he had aspirated, so they ordered another chest X-ray to see if there was evidence of pneumonia. In the meantime, he was placed back on the high flow vapotherm for more breathing support.

He has continued with the horrible-sounding cough, but it has calmed down a little. The X-ray came back negative for pneumonia, but it showed right-side atelectasis (collapsed lung space). He will continue with the vapotherm to assist in reinflating his lung.

I now have no idea when we will be leaving, but it won't be for at least a few more days, and I am so terrified now for them to try to take him off the vapotherm again. I am afraid we are just going to go through the same thing every time we try. He was doing so well yesterday and this morning. It's just very discouraging and very scary. I have no idea what to expect with his chronic lung disease, and I am starting to worry that neither do the doctors. At times like this, I wish we lived much closer to a children's hospital!

To top off this day, Milyn has come down with some sort of illness. She has thrown up 6 or 7 times tonight. I am trying to convince myself it is food poisoning because she has been a round a lot of people lately, and I would feel awful if she is contagious, but I guess there is a nasty bug going around with lots of vomiting. :( Logan has also had a migraine all day, and I have developed a cough. When it rains it pours, and we're sure looking forward to the rainbow!


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