We headed out Wednesday afternoon and she had a sleep study that night. This was our most successful study yet (it was her third one)! She didn't freak out when they attached the million wires to her body and she actually slept pretty well throughout the night. The results of the study were also better than last. Her apnea episodes decreased from 16 to 8 per hour and her overall oxygen saturation was higher. I think last time her average was 88 and this time it was somewhere in the 90s. I can't remember?? She still needs to wear oxygen at night to keep her levels in the higher 90s. I'm really hoping one day we will be able to ditch the nightly oxygen.
The next day she had a swallow study to make sure she is able to safely swallow liquids without silently aspirating. Results came back showing some mild trace of aspiration, but the doctors weren't too concerned. For the most part, she is able to protect her airway and the trace aspiration only happened one time when she was using a straw, so for now, we are holding back on the straw drinking.
The next day was a busy day at the PWS clinic. She saw a total of 8 specialists!! These clinics, while helpful, are also extremely exhausting....for both me and Clover. I was frustrated right from the start because the very first doctor she saw was the ENT and he decided he wanted to scope her....which means he had to stick a little probe thing with a camera on the end up her nose and down the back of her throat. Yeah, that's not at all traumatic for the poor girl!! So that kind of set the tone for the rest of the day....Clover wanted absolutely nothing to do with anyone else after that....and our day was just getting started. It was a very long day and emotionally draining.
The clinic ended with me learning that we would be staying one day longer than planned because Clover needed to have her g-tube site surgically closed since it didn't close up on its own. I knew this was something that needed to be done, but had been dreading it because I did not want Clover to have to be intubated. It's always a scary thing with any child, but even more so with PWS kids. They don't handle anesthesia well, they can't have any narcotics for pain and their breathing issues are always a concern.
The surgery went well though and I'm glad we stayed and got it over with. The hardest part about it all was coming back to see her after surgery and seeing the i.v. in her neck. I warned them that they would have trouble placing it, and I guess they tried and tried and as a last resort, placed it in her neck. That whole thing just made me really, really sad. Poor little thing. She was pretty upset when she first woke up, but after some cuddling and some apple juice, she was back to her happy self and even smiled and waved at the doctor when he came in to discharge us.
It was SOOO good to finally get back home. Four days away from Henry and Curtis was WAY too long. I'm so thankful though that my hubby is so dang awesome that he was able to take such good care of Henry for so long.....completely by himself!! That man....he's a sexy one!!
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