Almost Home...Almost-is the key word!

Well today didn't quite go as I had planned. Today was our anticipated discharge date from the hospital, that did not quite happen. The end of last week, I knew something was brewing though. Joey had desaturated a couple of times (which is kind of unlike him unless he's got some agitation from something else or it's the beginning of some issues) Everyone kept saying that he was growing or we couldn't figure out what his base line was, but my mom gut knew something else was going on.  We ended up moving to step down pod Friday night and I heard from the night nurse that he was pretty fussy and she had to crank up his oxygen during that period. Again, this is not so much Joey. The next night, Daniel and I spent the night in J-Pod (the sleep in and step down pod), and I learned that Joey does not sleep through the night, but Daniel does. I woke up immediately at every desaturation.  Daniel kept sleeping right on through it.

On Sunday he had some good moments, but again, I noticed his oxygen needs were slowly creeping back up.  His new norm was 500-700 CCS, but more so the 700/800. His nurse said that he woke up fussy during the evening. Today, which is Monday, he started out semi strong. We filmed a whole video, and he sat right through the whole filming with us without any difficulty. As the day progressed, he was not maintaining his numbers, and now we are at 2 liters of oxygen flow. Something is definitely brewing.  He has been crying out in pain all day, and Daniel finally convinced the NP to give him some Ativan to help with the pain.  We also had a chest xray taken, and there's a possibility that there could be some residual fluid from his shunt in his lungs causing him to require more oxygen, which requires him to have a higher flow of oxygen flowing through the cannula, which then causes agitation to his nasal flares since the air is not humidified.  Joey received a dose of lasiks to help with the the possibility of fluid of his lungs, so we will see tomorrow if that helped and will allow him to be weaned off the additional flow.

After he was given the ativan with the increased flow of 2 liters, the boy is conked out and saturating at 100, which tells me that did help to relax him. It was really hard for Daniel to see him this way.

On the nursing front, we are not sure that we got approved for skilled nursing care. I really hope something happens, because I would like to sleep if I'm going to continue working!  We have gotten so close to going home, I can just smell it.  This was a reminder that this is all in God's timing and not my own!

Sweet Joey is also 5 months today!

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