Thursday, November 17, 2016


Josh's cath is done, now we can breath a sigh of relief. Comparing his current pressures to his previous cath they found the results were nearly unchanged. Actually, the resting value has slightly improved this time. What's more, his pump is functioning just fine. This is probably the best news we received because the pump's function has been something of a worry for a couple of years now. 

While his pressures aren't great, he has adapted well to the slightly high pressures and his doctors are pleased to see they aren't rising. 
Overall, Dr. Peng (his cath doc) said she is pretty happy with everything she saw.

We also discussed the results with Dr. Kaufman. She is his primary cardiologist at Stanford and the driving force behind his treatment plan.  We discussed the plan moving forward based off today's results. In short, she thinks we need to "keep doing what we're doing."  At this point neither of us feel compelled to list Josh for transplant.

This is really what we aim for with his treatment plan, safely buying as much time as we can before transplant. 
We really feel good about the results today. Last time we were a little disheartened by his numbers, but this time, armed with the knowledge they aren't declining we are pleased. 

Josh was such a trooper through the whole process. His buddy Owen, who is an old pro when it comes to heart procedures, had given him a pep talk the day before which helped settle some nerves. 
Josh didn't need to be intubated during surgery so I feel like we were pretty lucky in that regard. He only needed to lay flat in recovery for 4 hours which was wonderful compared to the typical 6 hours. He woke up really groggy and it took him so much effort to mutter his first few words. He only had a tiny voice and closed eyes as he worked them out. Those whispers I eventually deciphered to be "Xbox" and "jalapeƱo Cheetos".  When he's in these situations he knows he can get just about anything he wants. Ha!

Unfortunately for Josh he did so well during the procedure he didn't get to recover in the bed they reserved for him in the CVICU. He stayed on the recovery floor, which lacks some of the perks of ICU that he's accustom to. 
But regardless, he had a great nurse and the stay was relatively short lived. 
He bounced back pretty fast as soon as he was back on his own two feet, he was darting all over the place making me nervous. I can tell the hardest part of recovery will be keeping him from playing harder than he should. 
I am so grateful that's my biggest worry tonight.

I'm really feeling thankful for the positive report and that he's been in good spirits. Thanks to everyone who has been there for us, who

has been thinking of us, praying for us, reached out with encouragement, visited, helped with the kids etc, etc. We truly feel loved and we appreciate it all immensely!

Monday, November 14, 2016

Upcoming Catheterization

This post has been a long time coming. I've slipped into bad habits and sort of let the blog go. I do intend to keep updating, but with Instagram and Facebook always at the finger tips I find those platforms to be the quick (lazy) way for me to pass along information.

A lot has happened since my last update. Josh is a big third grader now, and he's at a new school. The school is a really good fit for him and he transitioned almost seamlessly. That's not to say life as a third grader is glorious because it's proven to be quite rigorous, and a bit overwhelming. But he's getting through and I can see he's really growing as a student. Of course, we are very happy for that!

On the medical front, everything has been stable. I hesitate to type anything too optimistic because we could have the rug swiftly pulled from beneath us later this week.  Josh will have another heart catheterization on Thursday.  His last cath was +2 years ago and they weren't too thrilled with his pressures at that point. The purpose of Josh's caths are to determine if Josh is ready to be listed for transplant. We personally weren't ready to list him for transplant 2 years ago because his quality of life seemed too high to list him, though the team at Stanford felt he was certainly a candidate. If I'm honest, I hope for improvement with the results this week, but I don't expect it. I think best case scenario his pressures won't have gotten any worse.

On my end (this is not scientific or backed by medical findings), I think he's doing better than he has in years. He rarely vomits anymore & when he does it's generally anxiety induced.  He's finally growing a bit and he's very active.  There was a time when he was vomiting up to 3x a day, and for years his growth practically plateaued.  So I'm definitely very much hoping to hear good news on Thursday, but the past 9 years won't allow me to put too many eggs in that basket.

Josh has handled himself pretty well knowing he has this surgery on the horizon.  He's definitely been a bit more anxious, and it comes out in unexpected ways at times, but overall he's hanging in there.  I'm hoping we can get his therapist to stop by and talk with him either before or after the procedure.  He began seeing a psychologist a couple years back and has seen her on and off depending on how he's doing emotionally.  It's been helpful to him and I'm really happy we have her as a resource.

I'll do my best to give an update on the blog, more than the 1 or 2 sentences I'll likely share on Instagram and Facebook Thursday evening. However, it may not happen until a few days after the cath.  Thanks to everyone who still checks for updates, and shares in our love for Josh. I'm always blown away by the love and support we've felt over the years. ♡