I think I mentioned in my last post that Harlie had "exercise induced intolerance." Which, in her case the word exercise means activity of any kind, like walking from one room to another. This has really been life limiting and has prevented her from having the energy to play or do much of anything.
We moved the Xbox down from the 3rd floor to our living room (oh, the sacrifices we make for our children!) because she couldn't go up there to play. We give her piggy back rides up the stairs at bedtime. She has moments where she plays, but they wear her out. Most days, just walking to the bathroom leaves her out of breath.
It is amazing to me how one problem seamlessly morphs into another one. Weeks later, I'm left wondering when "this" started. With that said, I think this activity intolerance started about 6-8 weeks ago. Probably around the same time we took her to see her ENT and he upsized her trach and discovered she has tracheomalacia (collapsing of the trachea). Once he upsized her trach, he said if we still had issues with her breathing we should see pulmonary. So, we did. And once we saw him, he said her lungs were good and we should see cardiology. She's had an echo, chest xrays, EKG and she's had her pacemaker interrogated. The only thing left to do was a heart cath.
So, here we are.
Yesterday, I had Harlie and Cooper in the car after swim practice. He asked if we could do something tomorrow (which would have been today) and in that moment I realized that I had not told Harlie about the heart cath yet. Oops!! So, I said, "No, buddy. I'm sorry, but Harlie and I have this thing in DC tomorrow." She looks up and says, "What?"
So, I told her she had to have a heart procedure called a heart cath. Without a worry, she said, "Mom, my heart is fiiiiiine." I explained that they were going to see if they could help her get more energy to play. She was cool with that.
Last night at bedtime, she asked, "How long am I going to be in the hospital?" I told her hopefully just one night. She smiled and said, "A night without two annoying brothers..." That girl can be so rude!! ☺ Her brothers are so good to her!
I had to have her in DC at 6:45 this morning. So, Tom woke her up at 4am. She told Tom she had a great night's sleep. She cracks me up. What kid sleeps great the night before going into the hospital for a heart procedure? Anyway, she was all smiles and silliness waiting to go back.
As for the results...
Two main things.
1. He found some narrowing in her Fontan. In simplest of terms, her Fontan is the name of the procedure where the surgeon re-plumbed her circulation to return blood from her body into her lungs (normally blood goes into your heart, and then gets pumped into your lungs). They use Gore-Tex and it was sutured in when she was three or four years old. Since then, she has grown, but of course, the Gore-Tex has not. So, it has narrowed, kinda. This increased pressures a bit. Here's a couple of pictures.
So, he put a stent in it to open it up more. I think he said it was 10mm and now it is 13mm.
He said this might help a little.
2. He noticed during her cath that her pressures changed with her heart function. When her heart was in sinus rhythm (the way your heart is supposed to beat with your atrium and ventricle working together, in rhythm) her pressures were 16. But when she went into junctional rhythm (not the way your heart is supposed to work, with the atrium and ventricle working separately, or out of rhythm) her pressures were 19.
Her heart is really hard to pace, with beats initiating from all over the place (sometimes from the atrium, sometimes from the ventricle, sometimes the middle, etc.) and at random times. So, they are going to come and take a look at her pacemaker at some point. And they are going to send her home with a holter monitor to see if it does it again.
So, overall, her heart is "good." Mine, however, is another story.
I don't think anything he did today is going to be the fix she needs to live her life like she was living five months ago. His recommendation was to look again at her airway. Sigh...
Needless to say, it is frustrating. To look at just her airway, although it is far from typical or ideal, it is "fine".
To look at just her lungs, although they are far from typical or ideal, they are "fine."
To look at just her heart, although it is far from typical or ideal, it is "fine."
But, put them all in one little girl and it isn't "fine." You've got yourself subpar results that you just can't fix.
I told her doctor that I still feel like I'm in shock. I STILL can't believe this is where we are. I said, "She is getting so complicated." He laughed and said, "Getting?!" Haha! Wow, is my perspective skewed. This new normal is so much worse than the old one.
So, at some point soon, we have to go back to the beginning and talk to her ENT.
I just want her to be able to play and be happy. I know other parents out there who want their kids to be the best at stuff. Me, I am not that greedy. Sorry Tiger moms and dads! But being happy is where its at. And, the less it takes to make you happy, the more often you can be happy.
Anyway, we are here for the night, in the recovery room. But, we have the whole hallway to ourselves, (the very unhappy child next to us just left) so I'm happy about that! See how easy it is to be happy? And this is where I'll be "sleeping" tonight...
Tomorrow morning, she will have her pacemaker checked again. She already came and made an adjustment. They will see how she does overnight with that change. And she'll have an echo and xrays, and then we can go home. She's fiestier than normal this time around. We just had to remove two dressings (jugular access and groin), while she yelled "leave me alone!" All's done now and she's resting.
Okay, this has taken me all day to write. I need to be done and get something to eat.
Thank you for all the love and support. I was talking with a friend this afternoon and she said she wished she could do something for me. I told her to just love me and cut me lots of slack. She said done! Honestly, you just don't know how much you reading this, caring about us, and cutting us slack does for my spirits. Thank you, from the bottom of my heart.
Much love,
Christy xoxo
