Friday, February 24, 2012

lately - take 2

So here is the post I attempted to post earlier this week. Could blogger be any less user friendly?
After spending hours trying to figure out why my pictures aren't posting my sister told me it's because I have exceeded my picture quota & I need to pay to post pictures now. For real. I'm also pretty bugged that I have no control over the placement of my pictures in my posts...I'm not any good on computers, I'm probably the problem, but seriously blogger....dumb it down a bit!  Ok, I'm done ranting.  Here are some pictures of my babies:

Only a few days until Joshua will go back to UCSF for his procedure. I am so glad he's going because he is just so blue & runs short of breath more regularly. I am really hopeful that they will figure out what's going on. I'll post more on that soon. Thanks for checking in!

Monday, February 13, 2012

upcoming cath

Josh will head to UCSF in about 2 weeks to have his fenestration (hole in his heart) closed.  Normally, I think I would be nervous, but I have been a little worried about Joshua's health & there is no better place for him to be than UCSF.  So I welcome the experience because at least we'll know where we stand. Josh is thrilled to go back .Talk about short term memory, ha! He can't wait for the french fries and milk, too actually.
He asked if he'll need "an I.B."...he realizes that we are going for a procedure.  We talked a bit about it and he's okay with it, surprisingly not nervous. Like I said he's looking forward to the hospital food. Go figure.  Anyway, hopefully once he has this procedure he'll be a pinker kid. He seems pretty darn blue some times. I think I'll ask them about his diaphragm while we are there because he breathes harder than I like to see, and before his Fontan they felt like it was contributing to his shortness of breath.  It's probably wishful thinking that it could be as simple as his paralyzed diaphragm, but I'll wish any how. Some times all you can really do is wish & pray.

Joshua is doing gymnastics again...I think the pose they put him in for picture day is pretty funny. He loves gymnastics! It's fun to watch him having such a great time!

Saturday, February 11, 2012

another anniversary

Four years ago today Joshua had his second open heart surgery. He wasn't quite 5 months old. It's hard to believe this little baby is now my big strong boy. Upon hearing his diagnosis and being encouraged to terminate my pregnancy I knew it wouldn't be easy raising a child with a life threatening illness. But life is so much better than I ever dreamed it could be. We weren't given a lot of hope by the medical professionals who we worked with during my pregnancy. Truthfully, I was trying to emotionally prepare for a horrible quality of life for my baby. Despite the difficulty of hospitalizations, the medications, the surgeries, my Joshie boy has a very good quality of life. He is very normal and he is the happiest kid.
In light of Congenital Heart Defect Awareness Week I encourage any of you who can - to donate blood, and become an organ donor. Many children with CHD's will need a heart transplant in their life time. If you read any of the blogs I have linked on my sidebar you probably know that.
Hard to believe it's been 4 years...we look forward to many, many more with our little guy!

Wednesday, February 08, 2012

Heart update

Joshua went to the cardiologist today for a couple of tests. The news was okay. Not great, not awful. Basically he needs to be taking a bit more medicine than he's already on because his heart function is "mildly depressed"...but on the bright side, his leak has improved a bit and apparently his heart isn't as enlarged as it was when he was hospitalized a couple months ago. So he's making improvements.  Joshua was such a good little boy. He is always cooperative and polite, even when he seems a little nervous. It's such a blessing that he doesn't fight this process.

He most definitely isn't a fan of EKG's...he gets so anxious, but he is such a trooper.  It helps that his doctor is really, really good with Josh. If you notice in the picture below, Dr. Rivera has a helmet in his hand. He was showing Josh his "storm trooper helmet"...really it's his motorcycle helmet...Josh thinks he's the coolest guy ever! I think so too.

So anyway, Joshua's sats are in the low 80's which isn't great.  We are waiting for UCSF to call us in the next few days to schedule him to have his fenestration closed. It should be a fairly simple procedure and we are hoping his sats will be nice and high after he recovers.  Anyway, I expect that to happen in early March, but I'm not sure how soon it'll happen at this point.
Now for some really good news...a lady from Make-A-Wish called this afternoon & began discussing possible dates for a vacation for our family!  That call couldn't have came at a better time. I had been feeling pretty bummed out today because I was hoping for better news at the dr. appointment.  I couldn't help but get emotional imagining Joshua & the rest of the kids enjoying an amazing get away.  It's overwhelming.  More on that later.
And what kind of a heart mom would I be if I didn't mention it's Congenital Heart Defect Awareness Week...more on that later too!
Got to run, but thanks for checking in on us! 

Wednesday, February 01, 2012

doing good

Joshua seems to be doing pretty well lately. He plays hard and has been in a good mood lately.  He will go to his cardiologist next week and have a full day of exams. We are praying that things will look better this time. Last appointment he was still in heart failure, but hopefully this time they'll be pleased with what they see. I think I forgot to mention in the past that Joshua's fenestration (the whole that was created in the heart during the Fontan surgery to allow blood to off-flow preventing too much pressure) was still very open. The plan of action will be to send Joshua back to UCSF (when he's stable enough for it) to have it closed. They do the fenestration to help with the post-op recovery, they like for it to close on it's own and when it doesn't, they go back in and close it. I suspect they'll do it this Spring...or sooner. His sats (oxygen level in the blood) are low due to the fenestration and we'd all like to see it higher.

Anyway, if you are reading this - thanks for checking in on our boy. :)
I will have some real news to post next week. Praying it's good.

Also, our friends the McMillan family, could use a prayer as Tyler recovers from the Fontan.  We were roommates during past surgeries...Josh and Tyler were born only 2 weeks apart, both with HLHS.  We hold them dear to our hearts. I wish I lived closer so I could talk with Heidi in the hospital halls like old times. :) Anyway, say a prayer for their sweet Tyler...we are wishing them the best.