It really is rather amazing how one's mind copes with a lot of new, mostly scary, information. I will admit that last weekend was hard, but a tough lesson for parents of babies like Lyra. No procedure should be considered "routine". Even if it is routine, it's not uncommon for such procedures to uncover unknown problems and while you can't expect it, you should at least be ready for the possibility. Our mistake was having a plan for the weekend. We had thought we'd be taking Lyra home, maybe even that same day. Suddenly being routed back to the PICU after a much, much longer cath, and then being stuck in the PICU for the entire weekend, with surgery first thing Monday morning, was difficult.
Lyra wasn't too happy wth it either. Friday evening she was uncomfortable and in pain from the cath until they found a happy medium with her medications. Maren would go back and forth from the hotel to the hospital to nurse her, which helped to keep her calmed down. Lyra wasn't sedated during this part of her stay and she was fairly grumpy the entire time. At one point they discovered that her femoral line, where they give drugs and draw blood for labs, wasn't working, and a lot of the fluid they were giving was leaking, so the plan was to get another peripheral IV into her so they could take out the non-working line. Unfortunately Lyra is quite small, her veins are small, and she was upset and moving around a lot. This made getting an IV into her a major challenge. Two nurses, two doctors, and about a half-dozen needle-jabs later, they finally got it, but as any parent who has witnessed their baby get inoculations can imagine, Lyra was seriously upset with that entire process.
That was also hard, seeing her cry like that, for a long time, and not being able to do much at all to help is not something I hope to see repeated any time soon. Lyra is funny though, later that night, still cranky, they gave her some different pain medication and it must have made her feel a whole lot better because rather than falling asleep, she was wide awake, and wanted to play. She'd look back and forth from me to Maren with a "what are we gonna do now" look on her face. Eventually the medication did allow her to finally get to sleep. Although, she'd wake up as soon as you tried to put her on her bed, so I just decided it wasn't worth it and let her sleep on me. Maren came in a little later and nursed her into a deeper sleep and put her down to bed. In the long run, her little play time probably helped her stay sleeping through getting her femoral line removed (amazing!) and she slept all the way down to the operating room, which was what we were hoping for.
Last night some changes were made to hopefully get Lyra's swelling down a bit more. They also cleaned her up a bit and that's always nice.
She's been doing very well, getting her fluids out so they can close her chest. Maybe before the end of the week that will happen, but Maren and I are patient with this stuff now. If it happens, great, if not, it'll happen sooner or later.
We've been visiting her all day since the surgery and she's resting well and getting stronger.
Lyra made it through the surgery without any major problems. The only complication was that they had to do more repair work on the aortic arch than expected. They did try to close her chest, but apparently Lyra wasn't cooperating with that decision, although I don't really know what they meant, medically, by "she wasn't happy with that". So they went back in and opened her chest back up and left it that way until the swelling goes down. This is what happened during her first surgery, so we're used to it... well, as used to it as one could be under the circumstances.
The surgery lasted about twice as long as we thought and although we were not kept very well informed during the procedure, we now know enough of the staff to stop people in the hallways and badger them for information. I found out Lyra was back in the PICU only because I saw her anesthesiologist in the hall and asked how things were going.
So far Lyra has been doing well in the PICU. We did get to see her after she was stabilized and all her medications and support had been set up. I also called a couple times last night and this morning and she's doing fine and they're working on weaning her off of several medications.
Friday morning we had our first real setback with Lyra. She had a cardiac catheterization at 8am that morning, which, was supposed to be a routine procedure in preparation for her second stage of surgery. However, during the cath, they discovered some narrowing of her aortic arch, and unfortunately the area where her shunt connects to the pulmonary arteries, which had been balooned in a previous cath, had also narrowed. The result of this was that Lyra's body had started to grow a number of collateral arteries that lead to the lungs. Normally these are very small, but with the reduced blood flow caused by the aortic and pulmonary arterial narrowing, her body started to grow the collateral arteries to supplement the blood flow. The result of that was that her pulmonary arteries haven't been growing.
So, tomorrow (7/26), she will undergo her second open-heart surgery that will remove the current shunt, repair some of the narrowing of her pulmonary arteries and install a new shunt in a different location. There is also the possibility that they will have to do some repair work to the aorta as well.
Currently Lyra is doing okay and is in the Duke PICU. She's awake and alert, not sedated and while she's not too comfortable or happy, we're at least able to hold her and comfort her. Maren is still nursing her when she's hungry and we've been with her the whole time, except late at night and even then Maren has gone in to nurse her when she wakes up.
I'll post again when I have more information.