A Mixed Bag

Surprise, surprise, we have good news and some not so good news to report today.

Good news first. It really seems Jaisal's high respiratory rate is due to exertion. We tried letting Jaisal breathe room air again this morning and in a short while his heart rate shot up. We got him back on high flow oxygen quicker than yesterday and he seemed to be able to recover better and maintain a high, but not ridiculously so, heart rate. It was a relief to come to this conclusion, because Kirk and I were definitely worrying that the heart rate was a cardiac issue, despite the PICU doctors repeated assurances that it is not.

There are two thoughts as to what this could mean. 1. As Jaisal's endurance improves with time, he will tire less easily while breathing, he will not need respiratory support, and his heart rate will come down. This could take days or months. 2. Jaisal will have to work hard to breathe until his diaphragm starts moving again. This could be weeks, months, or until we surgically intervene.

Bright side view: This will resolve. Bleak view: The recovery could take a long time and could require a lengthy hospitalization, particularly because an ultrasound today showed continued paralysis in his right diaphragm.

To add complexity to this whole process, because really things are just downright calm and simple around here, today Jaisal fought wearing the bipap mask each time he was falling asleep. With our discovery that Jaisal's heart rate seems to be related to fatigue, the mask seemed like an important piece of the recovery process. It created a time where Jaisal was alleviated from the work of breathing, so he could rest and recover. Today he's fallen asleep on high flow oxygen and his heart and respiratory rate have not come down as much as we'd like for his rest periods. I'm not sure if he'll be more worn down tomorrow and have to work that much harder.

Bright side view: If Jaisal can tolerate whole day periods with just nasal respiratory support, the possibility exists for us to go home on oxygen and have frequent check-ups to see if his respiratory status is improving. Bleak view: The exhaustion results in a step backwards in this process.

I think if we're really optimistic, we'll be in the hospital for one more week, likely with some sort of respiratory support at home. That will put us at one month in the hospital. A scary thought. Kirk and I are definitely experiencing hospital fatigue and going stir crazy. The PICU is really wearing on us. The number of serious cases near us has increased, and I hate leaving our room. Additionally, the other people staying at the Kohl's House are all awaiting some type of transplant rather than recovering from one, as was the case with most of the occupants before Christmas. The conversations we have now are with people who are stressed like us and it can be an additional emotional drain. Thankfully little man is a bundle of playfulness, smiles, laughs, hugs, and a lot of poop (these meds are crazy), and he lightens the mood and keeps us going. I've said it before and I'll say it again, little man is a rock star!