We have a surgery date.
But first, look at Drew and Hank’s Jack-O-Lanterns! I bet you can’t guess which belongs to who?
November 24th. Thanksgiving week. A Monday. I am told discharge day is the following Wednesday.
Really? Only 2 nights for open heart surgery.
Sounds good to me.
Let’s see if Hank sticks to the plan.
He likes to prove everybody wrong.
We took the boys off to the annual Halloween party at The Country Club.
For Halloween, Drew originally wanted to be “Darth Vader-Shark Yellow Bird.” I got him to agree to pick one costume and he picked Darth Vader, only if Hank could be Yoda, so there you have it. Good thing Hank really doesn’t care.
While at the party, Drew ran into his best school friend Anna. After that, he pretty much ignored us.
My darling little Yoda. (who is now constantly saying “ma ma ma ma,” finally!)
Typical.
Today Hank had a follow-up appointment with his cardiologist at Primary’s. We were there to look at his pacemaker battery life and hopefully talk about a surgery.
But first, we had to make a pit stop in medical imaging. If you know Hank at all, you know he is delayed in his development, like he acts like he’s a 1 year old (except sometimes he acts like he’s a 6 month old), but he’s 5 months away from his 3rd birthday. Yeah. Except, he has lots of therapy and he is making teeny tiny baby steps, which is awesome. Anyways, his primary care pediatrician wanted to look at his brain because he is wondering why Hank is that way, because really there is no reason (he was premature, but he should be catching up faster than he is). So CT scan we did. (MRI is not allowed due to him being 100% pacer dependent).
So, it was expected that Hank would need a bit of versed to calm him so he could hold still for the 5 minute CT scan of his brain, but Hank wasn’t having any of it today. Steve and I knew we were up for a tough one when Hank started freaking out when they put his medical id on. Steve said he wished he had it on video to compare with this…
Literally, I had to hide the hospital bracelet under Hank’s sleeve because he just kept screaming, and he would pull up his sleeve, look at it and start screaming again. So funny, but not funny.
The IV insertion was ok, minus having to hold that kiddo so tight. He is so tough. Fighter. Once he had that bandage on, all he could do was hold up his hand, look at it, and start crying about it again. Funniest. He kept shoving it in my face to show me what those horrible people did to him.
After that we went into the CT scan room. Hank wasn’t having that either. The nurse gave him his first dose of versed. It did nothing, that kid wasn’t giving up today. Had to pull out the big guns. The ketamine did it’s job. He was nice and relaxed. Kid just laid there in a drunk stupor. He had his 5 minute scan and was done in no time.
The radiologist came in and talked with us while they were checking out Hank and his pacemaker. He was wondering really what he was looking for on the scan. I asked him what he saw and he said there were some calcifications. Funny, I remember when Hank was in the NICU and had a head ultrasound. They said there were some calcifications on his brain at that time. I remember being so worried that it was going to effect him developmentally, but I couldn’t do anything, it was awful. Turns out, they did a repeat ultrasound a few weeks later, and they didn’t see the calcifications. They were gone. They said that the first scan calcifications were probably just artifact (just noise on the images). Guess it wasn’t just noise. Funny how you are dealt what you can deal with at a particular time.
Regardless, we still don’t know exactly what “coarse calcifications in the gray-white junction of the bilateral cerebral hemispheres” mean for Hank, but we do know it’s not new changes. It’s all old, and it is not a tumor, nodules, or tubers which is great news. Hopefully that’s a good sign for Hank. We will just keep trucking along working hard!
Even in recovery, Hank was still obsessed with his bandaged up IV hand. It took him quite some time to wake up. He was really wobbly, but held down his graham crackers and apple juice like a champ. Then we were off to cardiology.
His card appointment went great. Hank looks great. His pacemaker generator (battery) is down to 3/4 to 1 year left. But last time, it was at 6 months. Because the readings are so unreliable, this usually means that we are getting down to the last of the battery. So yay! Surgery time. You all probably have the same look on your faces as Hank’s cardiologist did when he told me that it was time to schedule Hank’s surgery and I said “Yay”. It sounds horrible, and yes, nobody wants their two year old going on cardiopulmonary bypass, having their chest cut open and their little heart handled by some doctor. It is horrible, but we have to do it. We don’t want that blasted hole in his heart anymore. So, generator replacement and open heart surgery. We are ready to check this off our list. Hank is tough. We are so ready.
I will have the date in a few days. The schedulers can’t call soon enough.
Drew got into some trouble today. He got put into his room and to bed early.
Drew: I don’t want to go to my room.
Steve: Too late, you should have thought about that before.
Drew: I’m going to delete my room!
Steve: What?!
Drew: I’m going to delete my room.
Steve: How are you going to do that?
Drew: I’m gonna sign into delete my room dot com
PS…I’m not sure if that website exists, but if it does, please don’t give Drew access to your computer.
Drew loving school!
It’s autumn time.
Lagoon with the Darnells.
More canning.
Always crafting.
I love the fall. Despite the cold front that has come in, there have a been a few nice days still. It’s been a great motivation to get outside more. We’re going to have to take more trips up Green Canyon, especially since it’s right outside our front door. Plus, both the boys love it!
Now, who’s gonna teach me how to get the perfect shot during the golden hour? I need help!!
