Friday, June 03, 2011

check up

Wow. It's been a l-o-n-g time since I've posted anything at all. But that's a good thing in this case. Joshua is doing so well with his new & improved heart that I forget there's anything wrong inside that chest of his at all. His attitude, well that's another story.  The emotional aspect of recovery has been a bumpy road, but we count our blessings that his heart is doing so well. 
Joshua had a check up today & everything looked absolutely perfect! His sats - - - 96!!! That's normal, even for a healthy person! Pretty awesome.

 I wasn't expecting such a huge improvement after the Fontan. I suppose I didn't want to be let down if the results weren't what I was hoping for.  But now that he's recovered & life is back to normal (sans the good attitude) I can honestly say I didn't see it coming! The boy runs & doesn't lose his breath. He can keep up with the other kids, no problem...finally!  He notices it too & says that he feels "super strong" now. 
As for the emotional aspect of this journey he's been on, it's been tough. Joshua used to be really happy all of the time, prior to surgery. But surgery & recovery were very difficult for Joshua & hard to understand. He's 3 years old for heavens sake! The child life specialist at UCSF told us that after all he'd been through we should expect that he'd need to release all of that pent up emotion. As I mentioned, Joshua used to be so happy & so silly, but that seems to be a distant memory these days.  He has done a lot of crying, he seems impossible to please & has been angry.  I have to remind myself what he's been through, because it's very difficult to get the brunt of it.  He needs patience, compassion & a little lenience, however his sunburn side is out in full force and when you give him an inch of lenience, he takes a mile. So it's been a tricky balance for us. 
About 3 weeks ago Jon took Joshua on a camp out. Just the two of them. They spent some good quality one on one time together. Joshua came back beaming & telling me story after story of their adventure. It was so refreshing to see him light up, the way he used to. Since that camping trip I feel like we are seeing pieces of our old Joshua each day. I was feeling almost hopeless about a month ago & very overwhelmed. As I sit here typing this I can say that I'm now hopeful that time will heal these emotional wounds & our silly goose will be back for good.  We've sure missed his goofy laugh & his mischievous ways...but whether he likes it or not, he can't help but find trouble with his little side kick Sammy.  I imagine next month I'll be posting about some sort of crazy plan my boys hatched up & have forgotten this hurdle we are trying to get behind us.
Anyway, life is good. Despite this trial we are SO happy knowing that Joshua's heart is doing so well & that he can play all day & not lose his breath any more!


kirk and carrie said...

I'm so glad to read all the great news you reported. I think he'll be the same crazy kid in due time. All traumatic events take a while to overcome. Kids are super resilient. He'll be a little goofball again!

Hetrick family said...

Thanks for the update Ally!! :) I am so happy to read his little ticker is doing amazing. Not so happy to read about the effects of his traumatic recovery :( Poor Joshie (poor family)!!! Sounds like he is on the up and up though. Nothing like camping with Dad to get a boy feeling himself again!! I hope this too is a distant memory in NO time!!

Kyle and Alli said...

I am so glad to see you type about the emotional impact that you have all taken post Fontan. I don't think anybody prepared me for that part of it and Grant is only 2.5 weeks post Fontan, but we are experiencing a lot of that too. Mood swings, night terrors, insecurities, anger, etc. At least I am glad to know that we are not the only ones trying to work through that part of it and it is absolutely wonderful to hear how well he is doing on the cardiac side of things! Hang in there and know that we can empathize with this experience!

Katie said...

Dito...I'm so glad you wrote about this as well AND so excited to read that his sats are 96! Wow!!! We were told Maddie's should come up with time and healing, she's satting low 80's right now but we're only 10 days post-op. Like Alli said, it's hard to be prepared for the emotional toll this takes. Sometimes I feel like I've lost my girl...we're still so fresh from it all, I know it will get better. So happy to read all is going great for you family. Josh is such a cutie.

Smilen Champ said...

Hi Joshua and Family,
My name is Jenna and I came across your site. Joshua is a courageous, strong and determined fighter. He is a brave warrior, smilen champ, inspirational hero and a super trooper. I understand a lot what he is going through emotionally. I was born with a rare life threatening disease, and I am on so much meds for pain, and just went through my 29th major operation. I used to be so full of life and energy but now I am always teary eyed, and angry and depressed. My mom says it is because of all I have been through.
I will be keeping Joshua in my thoughts.
I love it when people sign my guestbook.