Tagged with HLHS

Does this fluid make my butt look big?

Colman was released about 9 p.m. last night, which put us getting into San Antonio around midnight. That’s the main reason I wasn’t able to post an update last night. I woke up at 6 a.m. yesterday morning. Not because I was rested, but because I was freezing. I’d already stolen one of Colman’s blankets … Continue reading

Tick-tock, tick-tock

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 … Continue reading

Last-ditch attempt

Thursday. I’m dreading it, but I also want it to be behind us already. Time is doing that weird thing it seems to do when you dread something. It’s speeding up and slowing down all at once. I feel like a little girl again, pouting in the department store on a shopping expedition about how … Continue reading

Viva Fiesta!

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 … Continue reading

I have a ten-ager

First, I’d like to say, Thank goodness I’m still alive. Because based on the picture above, if looks could kill, I’d be a dead duck. I snapped this picture of Colman through the window yesterday after I told him I thought he should go outside to play for a bit. He gave me a horrible … Continue reading

Medical review board postponed

I wanted to give everybody a quick update. I heard late this afternoon, due to the unavailability of a couple of key doctors that comprise the transplant team, the medical review board did not meet this morning. Huge bummer. However, they are going to try to meet next Friday. You’ll be happy to know that … Continue reading

Embracing privilege

The medical review board is supposed to meet tomorrow and make a decision as far as listing Colman for a heart transplant. There are a few different scenarios that could play out tomorrow. The MRB could make the decision to list Colman, table the decision because they feel like he’s not quite sick enough or decide … Continue reading

Hospital headache

I know I’ve mentioned hospital headache before, but I swear it’s a real thing. I guess it’s brought on by crazy amounts of stress and sitting, but I’ve found it lasts for days and hardly anything will help it go away. Yesterday, I finally broke down and visited a chiropractor. After having a stress headache … Continue reading

Clean poop–Oxymoron or not?

The first day of Colman’s transplant evaluation was a pretty long one that started at the lab where they drew blood (and tears). We had appointments in the morning with immunology, infectious disease and nutrition. The afternoon consisted of occupational and physical therapy assessments. Colman was ready to kill me. Especially when we went to … Continue reading

A bitter little pill

We made it through the Christmas holiday in good shape. I came home after running a few errands on the 27th, and Kevin had taken down the Christmas tree and put all the decorations away. Needless to say, I fell in love with him all over again. New Year’s Eve, I received a call from … Continue reading