Crazy Heart Mama

Colman and I got started early this morning. I woke him up at 5:30 a.m. and we were checked in at TCH by 5:50 a.m. Then we waited for an hour and went to pre-op holding where the doctor met up with us to perform the metabolic cart, which pretty much consisted of Colman laying perfectly still for ten minutes while wearing a plastic bubble over his head. Seriously, it looked like the easiest test ever. That’s where I was wrong. I’ve never seen Colman sit still for ten minutes, and then he freaked and said he didn’t feel like he could breathe inside the bubble.

The doctor asked, “Is he always this wiggly?”

“Yeah, pretty much.”

“Well, that’s why he’s not gaining weight,” he said.

Ya think? He’s a genius, that one.

I finally threatened coaxed Colman into complying because I felt this was one test I really needed to establish a base line for growth. The doctor also came up with an alternate way to administer the test that involved a mask that was placed over Colman’s nose and mouth and Colman did much better during the second attempt.

The results of the metabolic testing showed that Colman burns, on average, 1250 calories a day while in the course of doing nothing. So, in effect, what that means to me is I have to try to get 2000 calories down that little guy each and every day for him to grow. We’ve been averaging around 1600 to 1800. I think it’s going to be tough to get 2000 calories into him.

After the metabolic cart was completed, we met with the anesthesiologist. He gave Colman a choice of taking the goofy medicine (Versed) or going to the back and breathing the anesthesia. Colman chose the goofy medicine.

(He takes after me. If given the choice, I will always choose heavy medication.)

The anesthesiologist remembered us from when we came in by air ambulance in the Summer of 2012, and he was asking about Colman’s nutrition and what I’m doing to help fortify his food since that’s one of the biggest problems we’re facing right now. I was telling him about my little bag of tricks and mentioned coconut oil since it’s one of my go-to fats and he said, “Oh, I love coconut oil. I use it in a lot of my food.” Then he pointed to his belly and said, “Maybe a little too much,” and we kind of laughed.

I spoke to the interventional cardiologist briefly since we’d already visited a couple of weeks ago about what was going to transpire during the cath. By this time, Colman was feeling ten feet tall and bulletproof as evidenced by his slurred speech, bloodshot eyes and the fact that he’d tried to take his pants off twice.

The nurse said to Colman, “You want to say ‘Bye’ to your mom and dad? You’re not going to see them till much later.”

Colman said, “It will be just like tick for me. For my mom and dad, it will be tick-tock, tick-tock, tick-tock.”

Truer words were never spoken.

Then he turned to the anesthesiologist and said, “Let’s go, fatso!” and pointed to the double doors.

Awkward.

I mouthed, “I’m so sorry,” to the anesthesiologist.

He said, “Oh, no big deal,” and he whisked Colman through the double doors.

After all the weeks and months Colman’s spent in the hospital, how does he not know the cardinal rule? The anesthesiologist is the last person in the hospital you want to piss off. At that point, I could only hope the guy would remember his Hippocratic oath to “do no harm.”

They took him back around 8 a.m. Around 8:20 a.m., Kevin asked, “How long do you think he’s going to be back there?”

Impatient much?

(It’s kind of funny because Kevin just says the things I feel. We both come up short in the patience department.)

By 9 a.m., he was completely under anesthesia, draped, had an IV placed and they were ready to proceed. They called to let me know at 10 a.m. that they still didn’t have access, which was a bummer. Finally, around 11, they’d gained access through his right neck and left groin. Colman’s heart and lung pressures were good. They test occluded his fenestration and his pressures held with the balloon in place. After much discussion with the cardiomyopathy/transplant team, they made the decision to patch the fenestration. In taking pictures of the patch, though, the cardiologist noticed that his left pulmonary artery was slightly more narrow than the right, so she decided to do an angioplasty and place a balloon to see if she could stretch the LPA. It barely budged and it looks to me about the same as it did before the angioplasty. She decided against placing a stent in the LPA. First, because that’s more hardware in the body. And, secondly, stents in the pulmonary arteries can make a heart transplant more difficult for the surgeons.

All in all, Colman was under anesthesia for a little over eight hours which made for a really long day for us. We talked to Dr. Liou, the interventional cardiologist, after the cath and she was “cautiously optimistic.” Her words. I’ve never seen her be even a tad optimistic before, so this was a good thing.

We went back to recovery and Colman was furious. He really has a hard time coming out of anesthesia. I’d told the anesthesiologist about the magic mix the anesthesiologist used in the previous cath last year where Colman woke up happy, but I doubt he bothered to look it up after Colman called him a fatso.

Colman’s numbers looked great in recovery. His oxygen saturations were bouncing in the normal range of 98 to 100 percent, which is unbelievable for him. I’ve never seen him get that high except one time when he was playing with the blow-by oxygen in the hospital PICU. Tonight, those oxygen saturations seem to be staying around the 96 percent mark, which is a bit better than the 85 to 93 range he’s been in. I’ll be curious to see what the oxygen saturations look like in San Antonio. Colman always is a bit higher here in Houston because we’re at sea level as opposed to the higher elevation of San Antonio. Who knew 800 feet could make that big of a difference?

Colman’s resting now. He’s had some pain that they’re managing with Tylenol, but he’s still pretty cranky. He’s feeling better now that the pressure bandages are off both sides of his groin area.

Instead of 24-hour observation, we’ve been admitted for “not more than two midnights” which is a little unusual. The team ordered a chest X-ray and an echocardiogram in the morning to check his heart function. If everything looks good, we’ll probably be sent home sometime tomorrow afternoon. He looked a little puffy to me coming out of the cath and even more puffy tonight. I’m hoping it’s just the anesthesia wearing off and tiredness after such a long procedure.

So far so good. It’s done. Now we just have to wait and see if his body will tolerate the added pressures.

Thanks to everybody who checked on us today. We appreciate all of your positive thoughts, prayers and support.