Tuesday, March 18, 2008

Happy but tired

Just two weeks ago, we passed the one year anniversary of the day I took Riley to the ER, which then led to those two additional open-heart operations and those eight weeks at UCSF.

Since he was discharged at the end of April 2007, Riley has gained back all of the weight he lost and then some, he's grown some permanent teeth and lost one baby tooth, he's joined a t-ball league, and he's been registered for kindergarten. We also moved to a new house which has a better outside area for play and bike riding.

Since we moved to the new house in January, he seems to get tired more easily. We're not sure if there is an underlying reason that he's getting more tired or if it is simply because he's exercising more outside. He really enjoys riding his bike, hitting the ball off the tee, and running the imaginary bases. There have been a handful of days when I had to carry him into the house, and he rested on the couch for a couple of hours before going to bed.

Yes we're feeling a little anxious that his increased level of exhaustion is something more than just more exercise. There has been nothing alarming enough that has made us take him in for a check up. Some subtle cues have been bluer lips, more frequent diarrhea, and a more regular upset stomach. Recall that diarrhea and upset stomach were prominent characteristics of PLE. I'm not suggesting that maybe it's come back. But mostly, I think I'm hypersensitive and the past two years during the months of March and April, he's been in the hospital.

For now, since I don't have anything more than heightened awareness and some symptoms that could very well be coincidental, we are going to wait until after his birthday (April 2) to go in for a check up. He will need a check up around his fifth birthday anyway, so I'm not going to offer him up any sooner than necessary.

Let's just keep our fingers crossed that he continues to do well and that his dad's birthday, his birthday, his brother's birthday, his mom's birthday, Halloween, Thanksgiving, and Christmas are all hospital-free. I can hardly let my mind think that we might actually get a whole year without hospitals or surgeries or interventions.

5 comments:

Dani said...

Glad to hear everything is going well. Hoping you get years without any hospital trips. *Hugs*

Andrea said...

I can imagine the anxiety you must feel through March and April. I'm hoping this year is free of any hospital trips and that you guys can enjoy your time at home. And that Riley can celebrate his birthday at home and with delicious cake!

Dina said...

So glad to read an update on Riley. I've been thinking about you guys alot lately - the months leading up to May do that to me as well since you and Ken were the first "heart" family who took us under their wings.
Hopefully nothing serious is going on with Riley and you can relax some and enjoy your summer.
Dina

Will Nelson said...

Thanks so much for the updates. We are staying focused on the good news. Bill and Eva Nelson

psssst.... said...

Glad to hear that Riley is well.I know that the waiting and praying between visits can be exhausting. I'm a mother of a 15 yr old with a severe CHD. I am new to blogging but I wanted to share a video with other families of my son talking about his experiences with heart surgery.
http://chifund.blogspot.com/
Your family is in our thoughts and prayers!