Buster's House

235p
I just dropped Gabe off at the Cath Lab.
First update from the Cath Lab should come in about 1 – 1.5 hours.
Waiting patiently for Daddy to arrive. Hopefully he’ll be here soon.
Cellphone is dead and I’m not leaving the Surgical Family Hospitality Room until the procedure is over and I meet with Dr. Cheatham. Please don’t call me or expect any phone calls from me until later tonight.
He said the tricuspid valve leak is a soft indicator that there is a problem with the blood flow in the heart. It shows up when the ventricle is working too hard to get the blood out to the body and the coronary arteries. Gabe only has one ventricle doing all the work, so it is important to not overwork it. Dr. Wheller did say yesterday that his ventricular function looks great. The most likely solution will be placement of a balloon stent, the location is yet to be determined. The goal of this procedure is to buy him a little more time and get him through to the 4-6 month old range so that they can do the second surgery. It’s still a little too early for that surgery at this point.

415p
SFH Room receptionist just came over and told me that all is going well, they are in the process of measuring the pressures in Gabe’s heart.
I have a feeling this is going to be one of the longest procedures yet.
I’d give anything to trade places with our tough little guy.
He doesn’t deserve to have to go through all of this.
I’ve never loved anybody the way that I love him.

510p
The narrowing was in his PDA. We knew from the pictures they gave us after the last procedure that there was some buildup of tissue in that area, however, at that time it was not causing any problems. Dr. Cheatham has inserted one balloon stent in that area and will be re-evaluating the pressures and flows in order to determine if a second balloon stent is needed. The problem with inserting another stent in that area is that it could restrict flow to the retrograde arch and they don’t want to do that. They can adjust the size of a second stent, but only to a certain degree and it may not be enough to avoid causing other problems. Right now, the flow looks good through the retrograde arch, which is the other location where they thought they might find a problem.
Gabe has been doing well. He has experienced a few heart arrhythmias, however, that can and does happen to people with healthy hearts during a heart catherization procedure.

521p
SFH Room receptionist just called me over to tell me that they are done with the procedure and that Dr. Cheatham will be down to talk to me in about 15 minutes.
That was fast. I’m guessing they decided to not do a second stent.
I’ll have more information for you shortly.

6p
I just met with Dr. Cheatham. All went well and Gabe is already in the CICU.
Dr. Cheatham conferred with Dr. Galantowicz during Gabe’s procedure and they decided to only do one additional stent in the PDA. Even though there is some tissue buildup at the opening to the retrograde arch, the majority of the problem was inside the PDA and that’s where the new stent is doing the most good. It reopened that area and has restored it to the size it was when the first two stents were placed during the hybrid procedure. The balloon stent is a stiffer stent and will not give in to the tissue buildup like the more flexible stents that are there.
They are very pleased with Gabe’s progress at home and think that going home tomorrow is a good possibility.
When I get back home, I’ll try to scan and post some of these pictures so that you can actually see what I’ve tried to describe. The things they are able to do with an organ the size of a 2.5 month old’s fist are simply amazing.
Off I go to the CICU to see my baby and be there when he wakes up.

For those of you who might think I am using this blog to make light of our son’s heart condition, let me make this perfectly clear: congenital heart defects are no laughing matter. Sure, I post funny pictures of Gabriel and sleep deprivation drives me to do crazy things like rewrite the theme to Gilligan’s Island to fit our situation. Laughing hurts a lot less than crying – and I do more than my fair share of crying, believe me. I don’t think it would be right for me to always bring you tales of how difficult it is to be in this situation, simply because there’s one thing I’ve learned from all this – it could be a lot worse. In the grand scheme of things, we are very blessed to have such a strong, resilient little boy whose only problem is his heart.

Today Gabe is going in for another catherization procedure. There is a blockage or narrowing somewhere in his heart, but they won’t know exactly where until they go into his heart and check it out. They can only tell so much via the echo. Today is the first day that I can honestly say I’ve seen him turn blue around his mouth after eating. And that scared the hell out of me. His O2 sats were at 86 and he didn’t appear to have any difficulty breathing. I noticed it as the cath lab nurse came in to talk to me about today’s procedure. When I mentioned it to her, she said it was the first thing she saw when she came in. They suspect that there may some narrowing of his PDA, which has to stay open until the second surgery in order for him to stay alive. If the problem isn’t there, it may be in the aortic arch, which helps to get blood out to his body and the coronary artieries. The changes in his EKG & echo were very subtle, but noticable enough to the trained eye to raise the red flags. There was nothing we would have seen on the outside that would have alerted us to these changes until the situation became much more serious. That’s why we have to come down here for a checkup at least every 2 weeks, if not every week. In the doctor’s words, they keep such a close eye on these little ones because they are so fragile and the slightest change could cause big problems for them. Waiting for those changes to present themselves on the outside could spell disaster. So yet again, bringing Gabe to Columbus for his cardiology appointments has paid off.

Well, it’s about 1245p here and the cath lab will be calling for Gabe within the hour, so I’m headed back to the room to wait. As soon as I leave him in the hands of the cath lab staff and have landed in the Surgical Hospitality Room, I will be back to bring you updates. Depending on what they find when they get into his heart, the procedure could take anywhere from 2.5-4 hours. They think we will end up spending the night in the CICU for recovery due to the procedure being done so late in the day. Please stay tuned for updates as they become available. Thank you in advance for keeping us close in your thoughts and prayers.

[with credit and apologies to the writers of The Ballad of Gilligan's Island]

Just sit right back and I’ll tell you a tale
A tale of a fateful trip
That started from the Port of Lorain
Aboard a Practically Transparent Cruiser

The mate was a mighty travelin’ dude
The skipper put on her brave face
They hit the road yesterday
For two three hour tours

The doctor’s news was not good
There are still problems with the echo
If not for the courage of the fearless Gabe
All would be lost

The Cruiser was docked in the parking garage
With Gabriel
His Momma too
The doctors and the nurses
The echo tech
Nothing but hospital cafeteria food
Here on Gabriel’s Isle

So this is the tale of the heart baby
He’s here for another night
We’re making the best of things
Everything will work out all right

Gabriel and his Momma too
Await the decision of the team
As they talk about velocities
And tricuspid valve leaks

The cellphone’s dead, we’ve got a view of the roof
Not a single luxury
Momma didn’t come prepared to stay
That won’t happen again

So join us here tomorrow, my friends
We’ll do our best to make you smile
Meanwhile, Momma and Gabriel
Are still here on Gabriel’s Isle

We came to Columbus today for our regularly scheduled 2 week checkup. They saw a few things on the echo that they didn’t like and decided to keep us. Right now the concerns are a leaky tricuspid valve and some of the flows and pressures in his heart. Since they don’t know if what they saw is because he was fidgety and fussy during the echo, the plan is to sedate him early in the morning and send him downstairs for another echo. We won’t know anything more until after they assemble “the team” to take a look at the echo and decide what comes next. It was suggested that, depending on what they see, they may decide to do the next surgery sooner rather than later. I’ll let you know what’s going on as soon as I know.