We’ve officially kicked off Fiesta here in San Antonio. For those of you who may not live in San Antonio, this is the time of year when the entire city goes into party mode for three weeks. I’ve become so accustomed to this time of year, that when my sister was down from Dallas, I didn’t think it odd at all when an ambulance running lights and sirens pulled over in order to let a police-escorted motorcade of Cadillacs that make up King Antonio’s royal court drive past on 281.
“What the hell? That ambulance just pulled over for those Cadillacs filled with a bunch of old dudes wearing God-awful suits,” Holly said incredulously.
(I wasn’t sure if her incredulousness was due to the ugliness of the Cavaliers’ clothing, or the fact an ambulance pulled over for them to pass by. She can be kind of hateful about people’s clothing choices.)
“Oh, that would be the Cavaliers. That’s King Antonio’s entourage.”
“I don’t care if it was the freaking President of the United States. That was an ambulance,” she said. “Do you realize how screwed up that is?”
“Yeah, I guess that’s bad, huh? Maybe the person in the back of the ambulance isn’t really all that critical. Like, maybe a minor heart attack. Or maybe the person is a frequent flyer with the ambulance service and calls them, like, all the time.”
Holly just shot me a dirty look. Anybody else make up stories about people you have no idea about?
Anyway, at TCH’s direction, I quit giving Colman his beta blocker, which Dr. Rogers put him on in January of 2013 for persistent tachycardia. They wanted to see what his heart would do without it, which made me want to say, “I know. I know. It’s going to make his heart beat really, really fast!”
When Dr. Rogers made the decision, he’d never put a kid with a Fontan circulation on a beta blocker, but felt it would take some of the workload off of Colman’s heart and help to save the ventricle all that extra work. TCH wanted to trial Colman off of it because beta blockers can make you feel kind of crappy, and they were hoping it would make Colman feel better to not take it.
The good news is, Colman seems to be feeling better the last couple of weeks. The bad news is Colman’s heart is definitely beating fast. (Yay, me, for predicting the totally predictable!) Colman sat on my lap at Liam’s baseball game last week while eating his hot dog. When I put my hand over his chest, it felt like his little heart was going to beat right out of his chest. I checked his heart rate with the stop watch on my iPhone and clocked it at 140 beats per minute. I checked it after we got home, and it was 120. Then when he was sleeping, I used my stethoscope and timed it at 110 beats per minute. After keeping track of his heart rate for a couple of days, I called TCH and they wanted him to get a 24-hour Holter monitor done before we see them in transplant clinic on April 24th. So Colman and I headed down to Dr. Rogers’ office on Friday afternoon and hooked him up.
Dr. Rogers called me today with the results and is faxing me the report. From what the Holter showed, Colman’s heart rate is averaging 115. During the hours he was sleeping, it did go down to 82. During the day, there was a maximum heart rate of 178, which is entirely too fast. I’ve got a call into TCH and also emailed the transplant coordinator there to see what they’d like me to do. I’ve also asked for a status on the heart cath situation. Last time I checked, they had Colman as “pending” in the cath lab, which sounds like they’re trying to schedule him. I’m just not sure for what.
I know they want to try to close the fenestration on his Fontan conduit, which I don’t think is a good idea at all. What they have assured me of, though, is they can test the closure first by placing a balloon in his Fontan conduit. The results of closing the pop-off in his conduit will be immediate, so they can see exactly how his heart pressures will respond. Then they wait for thirty to forty-five minutes to see how Colman’s heart and lungs withstand the pressure of the closure. If it raises his pressures too much, they’ll take the balloon out and leave it open. If he tolerates the closure, then they’ll go ahead and try to patch the fenestration.
So I should have more information after our clinic appointment in Houston on April 24th. I’m also going to try to pin them down on what they think is an okay length of time for a kid not to grow. Their threshold for non growth is obviously very different than mine, and I need to know what their threshold is. Our pediatrician has again sent copies of Colman’s growth charts to Houston. We’re now going on two years with no growth, and they refer to Colman as “Failure to Thrive.” They say it every time. And every time, I have to steel myself for those words because I often think of that diagnosis as being for children and babies who are unloved. It breaks my heart even though I know his failure to thrive is due to his heart, not from lack of love.
I took this picture of Rowan and Colman last night to show size. My three-year-old is catching my ten-year-old. I’m going to show this picture to the heart team at TCH so they can see what I see every day. Also, I’d like for them to see that I do, in fact, know how to grow a kid.
In other news, our bathroom remodel is taking forever. The tub I ordered finally came in and it was the wrong one. It was a right-handed tub and we needed a left-handed tub. I was under intense pressure from the contractor and Kevin to cancel the tub I ordered and go with an acrylic tub rather than the cast iron tub I wanted, but I didn’t buckle. I stood firm. On Friday, the cast iron tub finally came in. On Saturday, it was installed after much groaning, grunting and “Oh, no! Oh, no! Oh, no!” I actually had to go hide in the other end of the house with my hands over my ears, so I couldn’t hear all of the carrying on. Apparently, cast iron tubs are really, really heavy.
Kevin came in and saw me curled up in the chair and said, “Somebody’s going to be crushed trying to get that tub in. It’s awful!”
“God, I hope not. That would really ruin any future baths if every time I take a hot bath, I have to think about how one of them lost a hand under it. By the way, I came down here, so I wouldn’t have to listen to all of that. Please don’t give me any more updates, other than ‘It’s done.’ Thank you.”
The tub was finally positioned with no major mishaps. Then the contractor and plumbers took a two-hour break where they disappeared. I imagined they went to go get tacos and give each other back massages before they came back and finished the installation.
Now we wait on the wall tile. It’s supposed to ship on April 25th, so we’re going to be living in a mess for a while still. Kevin in his infinite optimism thinks this will all be done by the end of May. I think he’s insane in the membrane. There’s no freaking way. Especially since we just discovered the existence of powderpost beetles in our wood floor in our bedroom. What are they? Well, supposedly they’re some wood-destroying insect that’s much easier to kill than termites, but they are incredibly rare. The bug man that came out yesterday said he’s only seen them once in his twenty years of being in the bug business and that was some remote place in Tennessee. We had to go to google images to do our research.
Then he went on to describe how they differ from termites and habitats and blah, blah, blah. I glazed over.
Why do I always get the super talkative bug guys? It’s agony. I just need to know that they’re going to kill them and my bed is not going to fall through the floor. That is all. I managed to cut him off before I was asleep on my feet by saying, “Wow! Powderpost beetles, that’s fascinating. Call me with a bid to get rid of them, and I’ll call my wood floor people to replace the boards.”
So, now, on top of two bathroom remodels, we have to replace several of the boards in our room. And my sweet husband thinks this will all be done by the end of May.
Um, okay. I’ll keep dreaming that the only butt cracks I’ll have to see after May are the ones that belong to my three little boys. Because from what I’ve seen in the last eight weeks is nobody in the construction industry believes in the power of a belt.