I am sitting in Scarlette's hospital room typing this up on Saturday morning. I hope to briefly catch you all up on the last 24 hours. We arrived at Children's yesterday morning around 10 a.m. We were pulled into pre-op at about 11. Scarlette's vitals were taken and at that point she fell asleep while we met with the cardiologist, anaesthesiologist, surgical resident and surgeon. Basically just answered a few questions, made sure everything was good to go and then waited for a while as they were preparing her O.R.
The cardiologist being there was a surprise, they informed us that they wanted to perform an internal ultrasound to get more clear and precise pictures of her heart and this was the best opportunity to do so as she was already going to be sedated.
I had requested that they inform us when she was safely intubated, as that had been a hiccup in her cleft palate surgery. The anaesthesia resident took Scarlette from me, and at that point we went back to the waiting room. Fifteen minutes later, we were informed that she had been safely intubated. That was a huge relief and the first 1/4 of the surgery had been performed safely.
About half an hour later, the cardiologist came in to speak with us. It was a very good thing that they had decided to do the internal ultrasound because they found a new abnormality in her heart. It's very hard to explain but I will try my best. There are four chambers in the heart, two atria, and two ventricles. The two atria have a septum or wall dividing the two, but Scarlette has a hole in this wall. That we already knew, however what we didn't know is she also has a thin membrane of tissue that seperates the top portion of both atria from the bottom. This is called cor triatriatum. What's amazing is she does have a hole in this also, which is how her blood is being pulled out of her atria into her pulmonary arteries. Right now this only needs to be monitored, however if the hole starts to close, or the tissue starts to form on top of itself, then it would prevent her blood from leaving her heart and becoming oxygenated. The treatment for this would be open heart surgery. Thankfully the doctors were made aware of it now, so that it can be monitored closely to detect whether or not it's getting worse. I know how hard this is to understand, especially without pictures, but basically all it means is that her heart is slightly different than ours and may eventually have to be surgically fixed, but for now she is perfectly fine living with this.
We did not get another update until after lunch and all we were told was that she was still in surgery and doing fine. An hour and a half after that (about 5 p.m.) Dr. Safford came in to the waiting room. He told us the surgery went as perfectly as it could have. He was very pleased at how the esophageal wrap came out and the g-tube placement was perfect. He did not feel the need for her to stay in ICU overnight, and we could see her as soon as they had woken her up.
We got to see her about a half hour after that and of course she was crying and completely overwhelmed. The nurses were busy giving her pain medication, and as soon as that was administered she calmed down and went to sleep. Mitch wanted to take the night shift, so my mom and I left last night at about 8 p.m.
Scarlette was only comfortable through the night if she her pain medication was effective. As soon as it began wearing off she would start to cry and her oxygen saturation levels would drop causing alarms to go off which further disturbed her. Mitch said it was not a very peaceful night.
I arrived this morning around 8:30 and she was crying very hard and in an extreme amount of pain. They would not let her have any more morphine until 9 a.m. but it was heartbreaking as you could tell how much she needed it. Mitch left around 8:45 and Scarlette would not calm down. I practically begged the nurses to please give her pain meds and they let me know that they had paged the attending with a stat page to come and check on her. They finally let me hold her at 9 and I tried to calm her down but to no avail. The doctors arrived at 9:30 and I was on the verge of breaking down myself because I could tell just how much pain she was in and it was so agonizing to not be able to help her. At 9:45 she finally FINALLY got her morphine and by 10 a.m. was sleeping peacefully and has been since! It is now 12:30 and she can have more morphine at 1:45 and I am just hoping this dose lasts until then.
The doctors JUST came in and said her belly is nice and soft and her stats are very good and the nurse can take the NG tube in her nose out just as soon as she wakes up! A couple hours after that she will get her first little bit of pedialyte through her new G-tube and they will gradually increase feeding (and then start on formula) and monitor how she is tolerating the feeds. As long as she doesn't start throwing up or continues to be in as much pain, it's just a matter of getting her to eat normally and then we will be able to go home!
At best approximation we will be home Monday afternoon, at worst probably Wednesday or Thursday. Thank you all so much for your prayers! Now we need a few prayers for fast healing and no more pain for miss Scarlette!