10th Annual Children's Heart Walk

Last year, we assembled 'Team Jaxson'  for the Children's Heart Foundation 9th Annual Walk With The Heart Of A Child event. At this event, we had only just found out that Jaxson would be having open heart surgery. We did not know when.

If it weren't for the Children's Heart Foundation- I wouldn't have been able to comfortably stay with Jaxson during his surgery. I was provided meals and care packages.

It's been a big year for us and are more than excited  for the 10th Annual Heart Walk!!

'Team Jaxson'  has been assembled for another go.

It looks like we will have a depressing lack of familial support, again. I don't understand why, but it is what it is, and that's for a whole different blog entry.

Please, if you can, donate to 'Team Jaxson' on behalf of our most amazing, lovable, strong warrior!

DONATE TO TEAM JAXSON!

DONATE TO TEAM JAXSON!

Thank You!

It Has Been A Long Journey

This is a long overdue update on Jaxson and his battle with CHD.

Since his surgery, we have been dealing with Jaxson's lips turning blue. He has been in and out of the cardiologist's office every few months and it has been decided that it is nothing. It seems that his lips are just the last thing on his heart's list to send blood to.

He also spent a week in and out of 2 hospitals, with the scariest rash I've ever seen. He underwent multiple blood tests and a couple different diagnosis, before we found out he had purpura. He had been fighting a few different colds, and his antibodies started attacking his small blood vessels, causing them to swell. His legs and feet swelled up so bad he couldn't even stand. He was already on the path to healing before they figured out what it was.

On December 26th, 8 months post OHS, we went and saw the cardiologist. I was nervous. Something crawled into my brain and told me we would get bad news. His appointment in September told us that he had arterial leakage and the hole wasn't closed. Turns out, the hole is completely closed. His heart healed over the patch so well that the cardiologist couldn't even see it in the ECG! He is now on 6 month visits, which is a HUGE deal to us. A year ago we were going to the cardiologist every 2-4 weeks, depending on his condition. 6 months visits did not seem reachable.

So here we are, 9 1/2 months post OHS. It seems like forever ago. Jaxson is growing great. From below the 3rd percentile his whole first year to 20th percentile. What a blessing. He is so smart, it's amazing. At almost 22 months, Jaxson can speak 4-5 word sentences, learning his colors and alphabet quickly and has AMAZING manners. And he loves showing off his boo-boo belly!

So proud to be his Mom.



I will attempt, yet again, to keep this updated. More with life in general, now that Jax is fully recovered.

4 Months

It has been 4 months since I have updated Jaxson's condition.

In July, One month after his open heart surgery (OHS), he still had a residual hole leftover from the patch and extra fluid around his heart. it was unclear if the fluid would go away, but he would be fine if it didn't. Still waiting for that residual hole to close.

In June, 2 months post OHS, we found out the residual hole is closed and the fluid is gone! Thank God! He is doing perfect and his chest is healing fabulously! His cardiologist appointments are going from every 2-4 weeks to 3 months. Then he will be on yearly appointments for the rest of his life.

What we are facing today-
Jaxson has been having issues at night with elevated heart rate while sleeping and nursing. This causes him to have a hard time breathing. I have also noticed that when he cries hard, his lips turn purple pretty much instantly. Yesterday, this happened 4 times. I have called his cardiologist and they said to bring him in today. Time to find out if anything is wrong.

I will be requesting a pulse oximeter for home use. It's the quickest way to know if something is wrong.

I will update after his appointment.
Until then, here are some pics of my CHD warrior!