Monday, August 20, 2012

A little lighter...A little quieter!

Bean is a little lighter and a LOT quieter sleeper now that her tonsils and adenoids are out.  She did pretty good over all.  That picture to the left is her pre-surgery after they had given her some Verced.  She gets mighty happy when the Verced kicks in!

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

Tonsils and Adenoids are Coming Out...

I am hoping that tomorrow's surgery will be Bean's last surgery for a long, long time and I hope that it makes her feel like she looks in this picture.  Tomorrow, we are scheduled to have her tonsils and adenoids removed because of her severe sleep apnea.  For those of you who have followed her story, you know that we were at the pre-op appointment for this very surgery when they discovered her tricuspid valve leakage and resulting fluid in her chest cavity, which started us down the road to the open heart surgery that she had in May.  She has now recovered from that surgery and yesterday she got a good report at her clinic visit and we are ready to move on the tonsillectomy.  I was shocked that they were able to get it scheduled only two days later, but happy to have the chance to get it done before my Fall semester begins and mine and my husband's work and travel kicks in to full gear!  It sometimes seems cruel to put her through yet another surgery, but there are so many reasons to get it done that I just have to go ahead and do it.

For those unfamiliar with sleep apnea in children, here are some symptoms (I have identified the symptoms that Bean suffers by bolding them):

  • Snoring
  • Long pauses in breathing
  • Much tossing and turning in bed
  • Chronic mouth breathing
  • Night sweats
These symptoms can lead to some pretty big impacts, especially if it is let go for the long term.  Some of which we already see in Bean (again, I used bold to indicate the symptoms we have seen):

  • ADHD
  • Failure to thrive or lower growth rates
  • Sleep walking
  • Bed-wetting 
  • Hormonal and metabolic problems
So, we're hoping that getting the surgery now will stop any further cognitive impacts that may lead to ADHD in the future (and she may be a little hyperactive now, but its difficult to tell with a 3 year old).  We're also hoping it may get her growing faster and maybe even eating better.  Sleeping better will be a boon for all of us.  I am not looking forward to another surgery, but I am looking forward to improving her health!

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

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

Serious boating

And another summer comes to an end...

And, Six Years Later - Marking the Good Times

Hello!  Long time no write on this blog.  I have always included a link to this blog on my email signature to keep people reading Bean...