Crazy Heart Mama

Colman’s heart cath has been scheduled for tomorrow at 9:00 a.m. The cath lab at Texas Children’s Hospital called on Thursday of last week to schedule Colman. The woman who called me introduced herself as the cath lab nurse coordinator and said something like, “Hi, we need to get Colman scheduled for his heart cath. We have Wednesday, March 20th available.” I didn’t say anything for a few seconds thinking she might add another date from which I could choose…

Crickets.

You would think as many times as we have been in and out of the hospital with Colman, I would get used to doctors and hospitals ordering me around, but it totally annoys me. Give me a choice. She could have said, “Hi, we need to get Colman scheduled. We have Wednesday, March 20th, and we have November 10th, 2014.” This would have made me feel better. I would have been, like, “Oh, hell. You better give me the appointment next week.” Most importantly, I would have been happy because I would have felt like I had a choice, even though I really didn’t. Because, really, forget the sick kids, making me happy should be their numero uno priority.

(Insert chuckle.)

(Okay. That’s completely ridiculous. Attitude adjustment needed. They say, “Jump!” I say, “How high?” And I will be happy about it.)

I got off the phone and realized in my annoyance at my dearth of choices, I forgot to ask about scheduling the surgeon to come by and remove the wire in Colman’s sternum while he’s under anesthesia. I quickly sent an email to the transplant coordinator, who also takes care of her fair share of heart failure kids not yet listed, and she’s on it.

I received a call yesterday from Dr. Fraser’s office (cardiothoracic surgeon) asking if we could come in at 2:00 today to meet with Dr. Fraser to talk about removing the wire from Colman’s chest. I wasn’t annoyed, though, because she was so nice in the way she asked and apologized for the short notice because she had been on Spring Break. I was kind of surprised that Dr. Fraser would be coming by the cath lab to remove Colman’s sternal wire. I figured they would send a Fellow by to do it or maybe somebody from general surgery. You know, somebody…lesser. But I am really glad he is going to do it.

Then I received an email yesterday from the transplant coordinator that Dr. Fraser wanted to see all of Colman’s operative reports. I ran home at lunch to look in Colman’s medical file and they weren’t there. That’s when I remembered that I took them to Houston with me when we were taken by air ambulance this past Summer just in case we needed them for some reason. CHOSA had sent a packet of all of Colman’s medical records with the flight team that was handed off to the people in the CVICU at TCH, but somehow, in all the confusion, they were lost. That’s when I patted myself on the back for bringing my copies, which I turned over…and never saw again.

Thank goodness for Dr. Calhoon’s nurse, Brenda! I called her and she had the reports faxed to me in under an hour. In the words of Colman Collins, “Phewf!”

Quick changes of plans are tough. Kevin had a bunch of stuff at work to finish up today before heading to Houston. This also means Colman is going to miss his field trip to the Empire Theater. I hope a stop at Buc-ee’s and a promise of “You can have all the candy you can eat,” followed with the threat of, “But if you puke in my car, you’re going to get it!” will be enough to satisfy Colman in missing his field trip.

So instead of Kevin and I taking Colman down to Houston together, I am going to take Colman to Houston today and Kevin is going to pick up Liam from school later today and come and meet us in Houston tonight. We were going to leave Liam with my parents and Rowan, but he was having terrible anxiety about Colman’s cath on Wednesday and felt he needed to be with us and be near Colman. Maybe he just suckered us into missing a day of school. I don’t know. I know he has been pretty upset lately regarding Colman, so I don’t blame him for wanting to be with us and know what’s going on. If he was at school, he probably wouldn’t be able to concentrate anyway.

We had an appointment on Thursday of last week with the Hem/Onc Clinic at CHOSA to discuss the clot in Colman’s left ventricle and to do a blood draw to check his Lovenox levels. The clot was still present in Colman’s left ventricle when they did the echo at TCH on February 19, so we still have to continue with the injections twice daily, which is a bummer. I thought that he would only have to do the injections for one month, maybe two, but it looks like that’s not going to be the case. I am not sure if we are going to be able to stop them in the foreseeable future. The doctor that we spoke with thinks that we may be able to eventually go down to a management dose of the Lovenox, but that is only a decrease in the medication and would still require the injections twice a day. She was really nervous that the clot would recur.

TCH recommended going to Warfarin as the blood thinner of choice, which is a pill, but requires frequent blood draws to check levels and you have to watch your diet on that particular medication. In discussing this with the hematologist here, she thinks the main reason for them suggesting Warfarin is because that’s the drug that is usually cited in all the studies with cardiac patients. Lovenox is a little more stable and easy, as far as once you have the level, you’ve got the level and you only have to check it on a monthly basis. Three out of three hematologists that we’ve seen agree on the Lovenox, so I think we will continue with the injections, but it stinks that there is no end in sight.

I received the results of Colman’s blood work on Friday and his Lovenox levels had risen a bit. Therapeutic level is .5 to 1.0. Last month Colman’s level was 1.0. This month his level was 1.1. We were instructed to take his dosage from 20 mg down to 15 mg and to have TCH do a blood test tomorrow to check his kidney function.

I wanted to stick my fingers in my ears and go, “Lalalalalalalalalalala.” I can’t think about anything being wrong with his kidneys when I’m already worried about his heart, lungs, liver, blood clots and excessive bleeding because of the blood thinner.

Then there’s the fact that Colman keeps losing weight despite the fact that I am sneaking extra calories in all of his food. I have been giving him peanut butter with everything. If he eats an apple, I’m like, “You want some peanut butter to dip that in?” I tried to make him his favorite, waffles, the other morning and he said, “No, I’ll just each this plate of strawberries,” which is great, but not good in the weight-gaining department. I wish I could be happy with a whole plate of strawberries for breakfast, but forget it. I’ll take the strawberries AND a warm Trader Joe’s chocolate croissant with a ginormous cup of coffee.

(I know ginormous is a stupid word, but it’s fun. And if you haven’t tried the chocolate croissants from Trader Joe’s, you’re missing out. They’re delicious. You can find them in their frozen foods section.)

After Colman’s discharge from TCH last August, we finally got him back to his regular weight, even on the low-fat diet, of 42 pounds. Last month, he weighed 41 pounds. Then this month, he was down almost a pound and a half to 39.6. To give a little perspective, Rowan weighs 31 pounds and he’s two and a half. Colman will be nine at the end of this month.

I will update again this week after we have some information from the cath. Please don’t last six hours like the last one!