Saturday, August 27, 2011

G-tube update

Today is Saturday and we are 3 days post surgery for Reagan's g-tube and fundoplication surgery.  For the most part it has been very smooth sailing with only one minor complication the evening after surgery and going into the next morning.

She was in a lot of pain on Wednesday night and awake for most of the evening from 11pm to 7am the next day.  The morphine was not working as a drip so the nurse gave her a bolus of morphine around 3am in hopes of relieving some of her pain.  I noticed around 5am that her breathing became more shallow, there sounded like there was some fluid in her lungs, and she was still in pain (very concerning after all the morphine she had been given).  I had no idea what was wrong but told the nurse that I was concerned and to call the doctor.  Long story short, it was not until 7am when we called the emergency response team that our concerns were taken seriously and there were about 15 nurses and doctors in her room that were very concerned that her oxygen levels were below 80% and was not increasing with them giving her oxygen.  It was scary for about 2 hours as everyone tried to figure out what was going on with her oxygen.  The x-ray of her lungs showed spots not filling with air properly so they gave her 2 bronchial treatments and she finally started to breath easier and started to rest.  We were able to take her off the oxygen later that evening.  Our assumption is that she had a bad reaction to the morphine and that it slowed her breathing down.

She slept most of the day Thursday and Thursday night and started feeling much better on Friday.  We started the first tube feedings on Friday afternoon and she has been tolerating them very well so it is likely that we will be able to go home on Monday!

Here is the first smile that she gave me on Friday morning:

Wednesday, August 24, 2011

Surgery day

Thank you to all for the warm thoughts, well wishes, and prayers!  Reagan was a superstar today, from being calm during our 2.5 hour drive to Houston, to being patient (much more than Mommy) during the 4+ hours we waited for her surgery to start, and to having great anatomy (as her Dr. said, lol!) so that the procedure had no complications.

She has woken up once in pain because Mommy let the morphine wear off by accident, but promise that won't happen again.  She is sleeping comfortably in her bed and I hope that tonight goes smoothly for her.  Agains, thanks for all of the support and thank you to our amazing family for being here in Houston with us!

Here is a picture from her brief waking but after we got the pain back under control:

Monday, August 22, 2011

First day of school

Summer is officially over and I have survived with some small amount of sanity.  It was a very long and very hot summer for us and I am in no way sad to see it end.  Reagan will be going back to school tomorrow at a new school with an entirely new team.  Although I know that she will miss her old teacher and friends at the other school, she told me last night with a big smile that she is excited to go to school tomorrow to meet her new friends.  Her mom, on the other hand, has been very anxious and nervous about this new school and new team, hoping that they "get" Reagan and understand how Rett Syndrome controls her little body.  Time will tell.

Thursday, August 11, 2011

"Spending Time Ending Rett"

Check out the IRSF Texas fundraising events featuring Clint Black and Kevin Black at  I am so thankful to this family for their continued support in finding a cure for Rett and am excited to be a part of this year's events.  It is all going to be a blast and will be in true Texas style...BIG!  Clint also did a short video that you can watch here.

Please consider joining our Strollathon team, Reagan's Warriors, or making a contribution to sponsor us.  We appreciate all of your support!

Pool time!

Both of my girls have always been water babies, actually more life fish out of the water.  I love seeing Reagan continue to enjoy the water so much that she smiles and giggles.  I love that there is something we can do together as a family that we all enjoy so much, even when it is 110 degrees outside.  I love that I can get Reagan away from her favorite tv show for more than 10 minutes without a major meltdown.  I love marveling at Lauren's confidence and excitement when she jumps into the pool.  I love watching Lauren gain her independence as she tries to swim off by herself.  That's a lot of 'loves'!

Friday, August 5, 2011

The date is set

Reagan will be having surgery on August 24th in Houston for the gastric feeding tube (g-tube).  There are two things that are shocking to me right now: 1) that we are doing this procedure so early in her life, and 2) that I can not get past the emotions of having to feed my daughter by an alternate method.

Yes, I have read a lot about g-tubes and have heard a lot of personal stories from my Rett families.  I knew that it would be something we would have to do for Reagan eventually since it seems that at least 80% of children with Rett have a g-tube.  Yet, I thought she would be older before her eating declined this much.  It is bizarre to me that just 1 1/2 years ago she was feeding herself table foods, which progressed into us feeding her table food, and then soft food and then purees and now refusing almost all foods.  I was naive to think that we could do the temporary feeding tube and then coast on the increased weight for months until I came to grip with this decision. But we have only had the ng-tube removed for a week and she is already starting to slide backwards in weight.

I go back and forth between thoughts of 'this should not be something that my 3 1/2 year has to go through' and 'well, it's really not that big of a deal'.  I know that this is the right decision.  We must keep her healthy as possible until a cure if found.  Being underweight and malnourished leaves her more susceptible to getting sick, especially since she is in school and exposed to different germs.  Can someone please send my heart the message though?

Tuesday, August 2, 2011