Charlie’s new room was much smaller, but we knew being here meant he was no longer the sickest baby in the NICU. We were happy to know he was healthy enough to be in a normal room. He was still on the oscillator, but after a few days they decided to change him to a conventional ventilator. Charlie loved being able to breathe at a more regular pace! His blood gases were looking good. He was still on the inhaled nitric oxide for his pulmonary hypertension. They had told us there are oral medications that are used to help that he would need to go home on. One of them being sildenafil, or what most people know as Viagra. The medication helps to open up and relax the blood vessels which then decreases the blood pressure. Since he was still needing the gas and Remodulin, they decided to start it. After getting to the full dose, they started to decrease the nitric over the next 1-2 weeks until he was fully off! He still had the Remodulin, but they wanted to give more time before they started decreasing it. Luckily his repeat echo looked good, so they were hopeful to stop it once he was extubated.
Charlie also continued taking in skimmed milk through his NG tube. He started to have multiple episodes of vomiting, so they switched from large amounts at mealtimes to continuous feeds. This helped some but the vomiting continued. They decided it would be safest for Charlie to go to interventional radiology to get a tube placed deeper into his GI system. He tolerated the travel really well and the spitting up nearly resolved completely! Because he was doing well and there were no more signs of a chyle leak, they removed his chest tube. It was a good few weeks of getting rid of things.
One of the biggest struggles throughout Charlie’s hospitalization has been sedation. It takes a lot to sedate him (thanks to some redhead genes), but he notices the smallest changes. In order to extubate, Charlie had to get to lower sedation and vent settings. They started slowly going down on his sedation, but he started having withdrawal. He would get very agitated causing him to have low oxygen. Every time they tried to go down within 24 hours they had to go back to where they started. At this point, they would try every few days but never made too much progress. During his episodes, one of the few things that helped was increasing his PEEP. This is extra pressure at the end of exhalation that keeps the air sacs in the lungs open. A “normal” PEEP is 5. During these weeks, his PEEP got up to 10 but was mostly stable at 9. It was a constant battle of finding what supported him best.
After Charlie switched to the conventional vent, it was much easier to hold him. We still had to have a nurse and respiratory therapist, but we didn’t need a special chair and the move was easier. We held Charlie nearly everyday. There was one day his nurse didn’t think it was a good idea to get him out of bed. His heart rate was high and his oxygen was low. Nothing seemed to help. The doctor that was there the first time we held him was on service. He decided we’d tried almost everything and holding wouldn’t hurt, so to just try and see what happened. I got Charlie into my arms and he was instantly asleep. His heart rate normalized and so did his oxygen. That was all he needed. In fact, I think it’s what we both needed.
I’ve talked about buying cute patterned sheets, and now that he was on a normal ventilator and more stable he was able to wear clothes! We put him in his first shark onesie, which maybe looking back was foreshadowing our transfer to Florida. It was so cute! He was waking up more and even started to play some. He was tracking us and had a high contrast mobile he was obsessed with! If we were standing next to him, his eyes would dart back and forth between us and his mobile. He just wasn’t sure which he liked more. It was so nice seeing him awake and happy. After a few weeks in his semi-private room, he moved again. This time he had a window. The natural light was so good for all our mental health, and we met the best NICU family. Things were feeling slow but stable. We were happy but ready to get our boy home.
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