Jack had a cardiology appointment at BCH on October 14th. We loaded the kids (and grandrea) in the car and headed into town.
We got breakfast, gigantic coffees and got settled in for a long morning/afternoon at the cardiology clinic.
mmm... chocolate muffin. who needs socks?
We got called in to get our blue hospital bracelet (that he refuses to wear) and get weighed in and measured. As soon as we walk into the tiny room, Jack starts to cry. I swear, he has PTSD and he knows why we are here. It breaks my heart every. single. time. Jeremy heard him from the waiting room so he ran in to help. We stripped his little body down and the nurse managed to get his height and weight. I have no recollection as to what his numbers were... all I could see were the tears on his cheeks and the fear in his eyes. My mind was thinking "Baby, you've been through so much worse" but my mother's heart was saying "I know, baby. I know.. I'm here"
As soon as he was done, I scooped him up the threw his johnny on (he looks so cute in those little things!) and it was back to the waiting room for... you guessed it. More waiting.
Big hugs for all of his supporters!
Playing with "Meemaw" (his new name for grandrea) and Pluto
Evie always comes prepared with lots of friends to play with.
Next up, we headed in for the EKG. This is usually the easiest part. He loves stickers and he basically just gets covered in stickers. The poor little guy melted down as soon as we started getting stickered up. With most kids, you'd probably think to offer them Elmo videos or Mickey Mouse to soothe or distract them. Not my boy. I asked him if he wanted Sia and the tears immediately stopped. The nurse got a good chuckle out of that one. We made it through the EKG with flying colors and headed back to the waiting room... for more waiting.
Hugs and kisses for the little patient and his mama
At this point Evie was getting a little bored.. so thankfully Grandrea was there to whisk her away and have a little adventure exploring the Hospital. They played on the magical stairs and even found a stage where Evie was more than happy to perform The Evie Show for Grander and a Hospital worker.
She hates performing, can you tell?
While Mom and Evie kept each other entertained we got called in for his echo. I was absolutely DREADING this part because he is suppose to lay still while they take pictures of his heart. This always takes FOREVER and if you've met Jack, you know sitting still for even a short amount of time is a struggle. As soon as we walked into the dim room with the blinking machines, Jack tensed, grabbed my shoulder and started crying for his sissy (Evie). It was the sweetest, most heartbreaking part of my day.. to hear the love he has for his sibling but the fear he must have been feeling. The technician was so calm and kind. She told me I could lay next to him to try to keep him calm.. so we put Sesame Street on the TV monitor next to the bed, took a deep breath and got started. He was a little squirmy and upset at first.. But I just kept talking to him. I kept saying any silly little thing I could that popped into my head. I don't remember a single thing I actually said.. my only goal was to keep his mind off of what we were doing and kept his attention on me. And he did AMAZING. It was probably the easiest echo we've ever had.. minus the sedated one.. and the one he slept through on his own.
Pictures of Jack's precious little heart. And a boy and his mama.
Then it was back to the waiting room... for more waiting.
Checking his email.. just kidding, he's listening to Sia again.
She was just acting how we were all feeling at this point.
Finally, the last leg of our appointment was meeting with Dr. Tworetsky, Jack's amazingly talented cardiologist. This man has known my son since before he was born. When you have a child with such a rare, complex health issue it's difficult to let go and feel trust for anyone taking care of him-- even when they are the most educated doctors and nurses. I trust this man with my sons heart.. essentially trusting him with my sons life. It's an incredibly heavy thing to think about.
So Dr. T finally came in and said as far as his echo goes, everything looks the same. In Jack's case, this is a good thing. His leaky valve is still leaking but it's leaking about the same. It's not enough of a concern to have to rip him open just to fix that one leaky valve, so Dr. T assured us that it's something that we can just wait for his next surgery (The Fontan) to fix-- assuming it stays the same until then. He was happy with Jack's o2 sats, with his growth and color. He said he looks great and told us to just take him home, love him, feed him and come back in 6 months!
Thankfully, both Jack's AND Soxy cat's hearts both sound good.
Big smiles for a successful appointment!
Basically, we go back in April for a check up and the next appointment after that will probably be to talk about a cath lab to get ready for the Fontan. All we can do is celebrate the positive and good that came out of this last appointment.. and try to push the worries for the next operation away for now. I'm a firm believer in trying not to worry about anything until you absolutely have something to worry about. In this case, it's a little difficult not to worry. But we'll just do what Dr. Tworetsky told us to do... feed him and love him. Until next time, BCH!
Not even out of the BCH parking garage.
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