Friday

Maks continues today on the vapotherm. He is on 4L and 40% right now, but he has been up to 4.5L and 65% today. The day started out okay. The doctor determined that he did, in fact, aspirate, and his lungs were full of crackles and rhonci, but he was maintaining his sats okay with the vapotherm. I have no idea why the doctor decided to try to wean him from the vapotherm again today when his lungs were still full of crap, but this morning, he gave the order to decrease the flow to 2L. That wasn't very long before I started noticing a change, and when the respiratory therapist came in, I asked for her opinion. After listening to him and seeing his sats, she agreed, called the physician, and got the order to turn it back up to 4L. The doctor said he wanted to see if his lungs would tolerate it, but I think it was just way too soon to even try.

After trying to wean him, Maksim really struggled. He hardly ate anything this morning because he was just too tired. He slept for almost 5 hours in my arms, and his sats kept dropping even with every attempt to turn up his oxygen. His lungs remained crackly and he developed a wheeze. More breathing treatments were done, and when he woke up and started breathing deeper and moving around a bit, his sats started improving. He got down to the 4L and 40% while he was a wake, but now that he is falling asleep again, his sats are dropping. His ear infection has also gotten much worse (he has had it for almost 2 weeks), so today they switched him to his fourth antibiotic. This time it is augmentin, which is known for causing bad diarrhea, so now the poor kid has yet another thing to deal with.

Right now it feels like one step forward and two steps back, and that we will
never catch up. He has gained a few ounces over the past couple of days and is back up to 14lbs 6 oz, though, so that is good. I just feel like none of the pediatricians here really know how to handle a sick baby with chronic lung disease. I'm sure they see some in the winter months, but for the most part, it seems like everything they are trying is a crap shoot to "just see" if it will work. I wish we lived in a big city with a children's hospital and a pediatric pulmonologist!

I pray that Maksim will have a good night and a better day tomorrow. Yesterday was his 11 month birthday, and I can't believe it is just a month until he is one year! Hopefully we can avoid a hospitalization for that birthday!


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