05/23/10 Weekly Update

The last week has gone pretty well in terms of Eli's health. We are very happy to have him home but it has been a lot of work. The nights have been especially rough as we cope with putting Eli on the mask while trying to get him settled down every night.

During the week Eli had a pediatrician's visit and a pulmonary clinic visit down at Seattle Children's. Both appointments went very well. Eli is maintaining his CO2 at home and his bicarbonate levels are holding steady. The only thing to note was a slightly lower hematocrit level. If you've been following the blog you know that we've struggled with some blood issues and we even had Eli transfused at one point to overcome the hematocrit issues. For some reason we just can't seem to put the hematocrit issues behind us. Eli's retic count is up in a solid range so there wasn't a lot of concern at the clinic but it's something that we are going to need to watch for the long term. Maybe the low hematocrit levels have something to do with Eli's overall condition. Since we don't have a diagnosis we're still looking for any possible explanation but so far we haven't been able to nail anything down.

The biggest challenge right now is getting enough sleep to be functional. As any parent knows, there's a period of time after you bring your baby home when you long for a solid night of rest. We pushed that off a little when we had Eli in the hospital because we could head up to the sleeper room to get some uninterrupted sleep. Now that we have Eli home we have been dealing with the issues that lack of sleep brings. Everyone has been a little cranky this last week but we're working through it and we're getting the job done with Eli.

On most days when we take Eli off the BiPAP we take a quick sample of his CO2 level using the end tidal CO2 monitor. I think we're averaging something in the low 50's most of the time and we even had a reading in the high 40's one morning. Eli's next clinic visit is about 3 weeks out so we have some time between the official check points but we feel like things are going well.

I'll try to post another update soon so stay tuned and thanks for your continuing support and prayers.