Thursday, March 26, 2009

It's hazy and drizzly out this Thursday morning. The roses are loving it, though and are blooming like crazy. My front porch looks and sounds like a sanctuary to get away from it all.

Joshua seems to be getting better and better each day this week. On Monday, his temperature on waking was over 100. He was so sweatty and pale and said his throat hurt. His oxygen and CO2 numbers were not so great - especially when he would be off his ventilator for any amount of time.

His temperature comes down a fraction of a degree each morning when he wakes. And we have noticed his CO2 is lower even when turning down his ventilator - more so each day. Last night, his nurse was able to turn his ventilator down to the lowest setting and keep him there all night and his oxygen and CO2 numbers were great. He woke up with a slightly elevated temperature, but much better than every other day this week. And he was not sweatty this morning.

We also had some GREAT news from school this week. Joshua took the reading portion of the TAKS test before spring break. We were all worried (because he has been so far below grade level in reading and math) that he might not pass the TAKS. If he did not pass, it would take an ARD (admission, review & dismissal from special education) committee decision to pass him on to 6th grade next year. He would have up to three chances to pass each portion of the test. But on MOnday, we learned Joshua not only passed the reading TAKS, but if he had not changed a couple of his answers at the last minute, he would have had commended results. That is so awesome, we were all jumping for joy!!!! He still must pass the Math and Science portions, and math has been pretty difficult for him so we'll keep our fingers crossed. But since he passed the reading portion, he does not have to keep doing these special assignments called RRJ (reading response journals). They were something that had his nurses and me working overtime to help him with. We are SO GLAD to say goodbye to the RRJs!

We do have a new challenge on the horizon. We have learned that the company that has provided Joshua with his two ventilators, oxygen concentrator and most of his medical supplies is going out of the ventilator business and will be transferring his care to another company. That means we must turn in his ventilators and O2 concentrator and get different ones from another company. Anytime you have to switch out equipment that you've had all hooked up as intricately as we have with his tubes, wires, carts, etc. it can be an ordeal. So, hopefully the new company will be able to provide the exact same kind of ventilators (or maybe better, smaller ones - but I doubt that).

Diaphragmatic Pacemaker

And we are still waiting to hear back from the doctors in Houston as to the next step in preparing for the surgeries for the diaphragmatic pacemakers. We know they wanted to get started on them soon after school is out for the summer. The last day of school here is June 4th

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