Saturday, November 21, 2009


Josh had a sleep study done Wednesday evening of the 11th... we went up to the room for him to be "wired up" at 4.30, and it took awhile to place all the monitors in the right place. This is a pic with only about half done.

The study was arranged months ago, and was meant to be done while he was an out-patient, but since the date had come around, they decided to go ahead anyway. The purpose was to monitor things like his oxygen levels, and heart rate while he was asleep. Josh had not slept properly, especially not through the night, for about 2 months, so I was interested to see what kind of results would be obtained.

Realising I was in for a long night, I took along the portable DVD player, but was told that once Josh was asleep properly, and monitoring commenced, that all devices, especially electrical, would need to be turned off. So that included the DVD player. And my phone. And the TV. Josh was in a bed with an air mattress, and on IV, and technically these both may have interfered with the reading. (As it turns out, this was indeed the case, and we may need to re-do the study soon).

As soon as Josh went to sleep, around 10pm, I figured Id try and sleep too, knowing I was in for a long night with suctioning etc. And whaddayaknow? Josh slept all night! Unfortunately, Ididn't, because there were problems with the IV and his feed and it kept beeping intermittently, and as there was no nurse actually looking after Josh, they had to call down to the ward each time, and wait for someone to come up.

Thursday afternoon, we we got the okay for Joey to go home, since his temperature had remained stable for a few days, and all else seemed fine. We didn't get home until 8.30pm though. Sigh.

But guess what? Josh has slept all night every night since!

That can only mean that he is indeed feeling "well" and the infection(s) have cleared!

He still gets ventolin and hypertonic saline through a nebuliser twice a day, but now he also receives an antibiotic this way as well.

So, while sleeping is brilliant, another important thing has taken (quite a few) steps back. Josh is still extremely stiff, and is not much fun to get in to his pram, or car seat. It makes moving him around anywhere extremely difficult, not to mention trying to put his splints on, or do any exercise or movements with him.

This pic was taken toward the end of October and shows the stiffness in Jojo's legs. We're working with the rehab team to try alleviate this...

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