Rough Start, Looking Better

James did well overnight, but had a rough start this morning. His SATs suddenly dropped back into the high 80's and his breathing increased again. Although he did not look as bad as he has, he was definitely struggling. There was talk about sending him back down to ICU and the BiPAP, but thankfully increasing his oxygen levels helped bring his SATs back into acceptable levels, and his breathing back to the 70-80bpm area ... where it's been sitting the last week. They did continue to discuss ICU as his heartrate has increased today and is not coming back down. But since the breathing is more reasonable now and he perked up later in the morning he is now being moved to Step-Down ICU, we are just waiting for his bed to become available.

About mid morning James began to perk up, become less stiff, move around more, started to play again and even started talking again (all he's done is moan or grunt the past week), and this time playing didn't send his breathing way up. The ICU physician was called in to reassess him and an Echochardiogram (heart ultrasound) was ordered to see if his heart is under stress. He technically should be sedated for this, but was in no condition to be sedated, and considering he did well for it unsedated last time (Nov '06) they tried again unsedated and he lay perfectly still for them. We are still waiting for the results.

This mornings x-ray came back showing no-improvement or looking worse. Although it looks slightly worse they say this could just be film exposure, etc. so they would judge it as showing no change from two days ago. Whatever the case, it's not heading in the direction we want at this time. Repeat blood work shows James' ammonia levels back in normal range of 22, so there is no further concern there.

Some discussion has been made about what the causes are, suggested tests or changes, but at this point priority is still his breathing and heart, so they are just speculating and giving ideas, until he is stable we cannot do anything that will make his less stable ... so for now it's a waiting game. Right now we are extremely glad that he doesn't have to go back down to ICU, right from the time we arrived on the Ward we felt more involved and informed as to what is going on. The doctors and nurses have been in frequently today because he is unstable, always letting us know what they are thinking, what to expect, what's going on, etc. ICU could learn a lot from them.

I also had a chance to talk with our Genetic Doctor today, about some of the issues we would have discussed at James' missed appointment on Tuesday. He was able to look at the results of his recent blood work to determine that James' thyroid is okay .... but ... his growth hormones are low again (as they were last summer, the original reason he was sent to the Endocrinologist). He will be in contact with our Endocrinologist to discuss what further tests to do to determine if it is indeed a problem. At the same time, he did not rule out that James' lack of growth recently could just be LPI related ... a common symptom being delayed growth. So we'll likely be looking at further testing on the hormone issue but there's no extreme urgency at this time. He also asked (or seemed more like suggestion) if we'd be interested in a second opinion from Toronto SickKids on James' lungs. I sort of got the impression he's not completely in agreement with our current Lung Specialist diagnosis or views. This is definitely something we'll discuss and consider seeing as we find our current Lung Specialist hard to work with at times because he talks so fast, in big terms, and doesn't answer any of our questions, leaving us completely in his trust ... something we've learned not to do with doctors. I find myself running back to our pediatrician to clarify things, which is not the way it should be. Considering how crucial James' lungs have been in his health condition (more so then the actual LPI) this is likely something we'll consider.

Well I've left James for nap time, but you never know who's going to bounce into the room and disturb him so I best return to my post.