Monday, August 20, 2012
The surgery went smoothly and we thought we were going to have the predicted 24 hour monitoring and release, but no such luck. Her oxygen saturation was really poor post surgery even with receiving oxygen through a nasal cannula. So, the first night they had to put an oxygen mask on her,which really ticked her off. She woke up screaming and grabbing at the mask every 15-20 minutes throughout the night. And the next day, she looked like this (with her new hammerhead shark puppet from Aunt Dawn):
During the day, she had to keep oxygen going through the cannula at a pretty high rate, but she didn't have to wear the mask, which was good. She gradually started coughing more and clearing out some of what was in her lungs, but it was obvious we weren't getting out of the hospital in 24 hours! She stayed on the cannula until this morning (surgery was Friday morning - so almost a full 48 hours of oxygen support was needed) and although she is still dipping down into the high 80s for oxygen while sleeping, she usually recovers back up into the 90s quickly and the ENT doctor said it was probably still much better than she was before, so he wasn't too worried about it. So, we are still here in the hospital for one more night for observation now that she doesn't have oxygen support - so far she has dipped into the 80s a few times, but has almost immediately recovered into the 90s (sometimes it takes a cough or two) each time. So, we should be out early tomorrow morning (early in hospital time, as it seems like discharge always takes hours to complete) and back home in Chico tomorrow with a much quieter sleeper!
I am also hoping that her growth takes a jump now that she isn't having to work so hard every night in her sleep. We shall see if that part actually comes to fruition.
Because of the heart valve issue (which seems to be working "beautifully" according to the transplant team last Wednesday), she will have her annual biopsy late (usually it takes place right around the heart birthday, but they are moving it out to March or April to give her a break after the heart valve surgery and this surgery) and then we will move to a once a year schedule to try to avoid any more accidental bumps - the less biopsies, the less chances for bumps. I'm happy about that. Even though she has had some issues with low-level rejection, her prograf numbers have been pretty predictive of the issues (good numbers = good biopsy results; bad numbers = worse biopsy results), so I think as long as we are on top of her prograf numbers, we should be okay. It was a little low a few weeks ago, so we had it rechecked last week after an increased dosage and the numbers were back up in goal range and they did a draw yesterday here at the hospital and it was on the high side of goal range. So, that is looking good.
Overall, I'm really going to be focused on getting her on a better sleeping schedule now that her sleep should be better. And in the interest of that, I will be trying to build a better schedule around the sleeping as well. She's very good at remembering things, so I think if we had a basic outline of a day for her, she would remember it well from day-to-day and probably be happy to follow along. Now, if only we can do the same!
Hope everyone reading this is doing well! Thanks for following our story!
Thursday, August 16, 2012
For those unfamiliar with sleep apnea in children, here are some symptoms (I have identified the symptoms that Bean suffers by bolding them):
- Long pauses in breathing
- Much tossing and turning in bed
- Chronic mouth breathing
- Night sweats
- Failure to thrive or lower growth rates
- Sleep walking
- Hormonal and metabolic problems
The surgery is relatively easy and short (compared to open heart surgery, most are). But, because of her health history, we will have to stay overnight in the Pediatric Intensive Care Unit. I am hoping that all goes smoothly and it really is just a 24 hour stay.
The summer has been pretty good since she recovered from the surgery (I would say she started feeling "herself" around the end of June, beginning of July - it was a long recovery - more mental than physical I think). She has gone to Monterey Bay Aquarium twice, went on a week long "camping" vacation in Chester, CA near Lake Almanor (we stayed in a cabin), and spent a lot of time at my parent's house, where she gets treated like a princess. But, she is also looking forward to going back to "playschool" and seeing all her friends there! Sorry I have been so bad about updating the blog. I always say I want to make it a priority, but it always falls down the list. Again, I will try to keep it updated more often!
Here are some pics from our summer adventures!
|Playing in Chico's downtown fountains|
|Swinging at the park by Grandma and Grandpa's|
|Juniper Lake in Lassen National Park|
|Mom and Bean's feet|
|Being a princess at Grandma and Grandpa's - literally!|
|Enjoying some fireworks on the 4th of July, with Daddy!|
|Spending some time with her favorite Uncle - Jeremy!|
|Enjoying the pool at Uncle Jeremy and Aunt Sydney's new house!|
|Warming up after the pool!|
|Under a turkey at Bravo Farms coming back home from Papa and Gigi's|
|Swimmin' with Aunt Dawn at the hotel at Monterey Bay Aquarium|
|Looking at a tiny, tiny starfish with Grandma at Monterey Bay Aquarium|
|Playing in the sand at the park|
|Back to the downtown fountains...|
|Legos and Star Wars at Barnes and Noble...future Nerd Girl in action|
|Playing near the giant slip n slide at Chico's Family Night Out|
|On the slide at the park|
|Summer runnin' at the park|
|Spooning with Nosey|
|Tiny pool, big goggles! A little swimming in the front yard.|
|Swimming with dino!|
|Tap dancing in a pincess dress.|
|On the boat in Lake Almanor with Gigi|
|And another summer comes to an end...|