Another problem was discovered early yesterday when Lyra's doctors and nurses were having trouble keeping her blood pressure stable. After an echo that was inconclusive, her primary surgeon decided it was time to perform another catheterization to find out what was going on.
They found that Lyra was having some clotting issues and had, during the course of the cath, clotted off both of her pulmonary arteries, which was making it extremely difficult to keep her blood oxygenated. They managed to get some areas opened, which in itself was fairly risky after only a week out of surgery.
They have also put her on a strong anti-coagulating medication that should break up the clots, but that also exposes her to increased risk of bleeding.
Maren and I are hopeful that these decisions are helping her get through these next few days. They plan on doing another cath early this coming week to determine how well the medication is working.
Currently she's stable and resting, and continuing to get a lot of the excess fluid out of her body.
A lot has happened since the last update, but I'd rather not go into too much detail. Lyra is doing okay right now, but she still has a long road ahead.
One of the problems she's experiencing has to do with the new physiology of her circulation following the Glenn procedure. Basically, blood flow returns to the lungs by gravity and the bellows action of her lungs, but because her arteries are small, sometimes the pressure in her lungs causes reduced blood flow. Because of this they put her on a different kind of ventilator that can provide the same volume of air at a lower pressure.
All of her vitals are good, but she's still pretty swollen. She needs to get a lot of the excess fluid out of her body so the doctors can get a better picture of how well she's adapting to the new physiology, which may take a good bit of time.
Lyra's surgery began around 9am on Wednesday morning and wasn't completed until nearly 6pm. Following the procedure, her heart function was good, but she experienced a lot of bleeding, the extent of which, I don't think anyone wanted to tell us. The upshot was that she was fairly unstable for the following 24 hours, requiring a lot of blood and plasma to maintain her blood pressure.
The second day she became much more stable and required less intervention to maintain her pressure. Soon, her heart rate started coming down and her pressure was more stable and everyone started to relax a bit. I don't mind saying that for a while there, things were not looking very good, but Lyra continues to amaze us though, as she always does.
Today, she's starting to get a lot of the excess fluid out as the diuretics start to work, hopefully she'll begin to look a little more like herself in the next day or two. Right now, she's really swollen and puffy from about her chest, up.
Tomorrow we take Lyra in to have her stage II surgery, the Glenn procedure, finally done. It's taken a bit longer than we thought to get scheduled, but it's happening tomorrow. I'd say it's definately happening tomorrow, but I've been around hospitals in recent months and I know that nothing is definate until it's actually done.
The surgery was originally scheduled a couple of weeks ago, but because of space issues, it was pushed back. Also, it was decided that Lyra should try to get a little weight put on or at least be moving towards a positive weight gain. Well, that proved more difficult than it might seem. Lyra is a very active little girl, always kicking and moving around and lately even has been rolling over and grabbing her feet and working on sitting up. Maren and I eventually threw in the towel on the conventional methods revolving around solid foods and use of bottles and sippy cups. Lyra simply isn't interested in them as avenues of nutrition. Entertainment, sure, but nutrition? No way. So, during the evenings, we had to put a nasogastric tube in and give her formula supplements. Those generally were not as bad as it might sound. It's certainly no fun putting the tube in, but at that time of the night, she usually fell asleep not long afterwards and typically kept sleeping until we took it out a few hours later. We only gave her a couple of supplements and then took it out to let her sleep normally.
Anyway... the tube feedings had a fairly small effect, but she did gain a little bit of weight. We're hopeful that following the Glenn, her heart function won't be making her burn so many calories and she'll gain weight without resorting to anything drastic.
Tomorrow we're supposed to be at the hospital at 7am. The surgery is expected to last about 4 hours, maybe a little bit longer. Please click the link on the left regarding the second stage if you're curious about what's going to happen. Lyra has the added bonus of having two superior vena cavas (most people only have one, and if you have two you probably won't find out unless you end up with other heart problems), so she'll be getting a bilateral, bidirectional Glenn. Basically, that just means the surgeon will have to connect both SVCs to the pulmonary arteries.
I'll try to keep things more updated now that there's more going on again.
We really shouldn't be surprised. It seems to happen with such regularity that we should expect things like this, but again we're blindsided.
We took Lyra into the hospital today for what was scheduled to be a pre-operative appointment. After checking her in and getting her vitals done, we were then told that there was no room in the PICU, so they couldn't do the surgery.
Then, we were told that there was some concern about Lyra's weight gain (or lack thereof). This was news to us. Througout her visits with her cardiologist, we were given the impression that her weight was fine to go ahead with the surgery. Now we're back to trying to get extra calories into Lyra for another couple of weeks.
This is now the second time we've gone into the hospital to have her Glenn done only to come away empty. I know it's a "temporary" setback, but I also know that time has a tendency to stretch when dealing with a hospital. It's two weeks now, but in a blink of an eye, it's another two weeks, or more.
The thing is, Lyra is a fun, happy, and active little girl. Before long she's going to be crawling and then burning even more calories. I very much hope we're allowed to get this surgery completed soon.