We are just back from a day at the hospital to go through the pre-op checklist with anesthesia. The hospital sent us a booklet a few weeks ago with instructions about what to feed Leah and when (and what not to feed her and when) on the day of surgery, and most of our appointments today were a reiteration of those instructions. We started in a small exam room where they took Leah's vitals, which were all good. Then we saw a surgical nurse who explained how the day would go: we will arrive at our appointment time (which we had not yet been assigned), park our car and enter the hospital in the surgical waiting area. A nurse will bring us to a small exam room where we will change her into a hospital gown and wait to speak with anesthesia again to review whether we had followed the pre-op instructions (apparently, if we have not, the surgery is cancelled, so it's a big deal). Our two surgeons will come into the room to review the procedures with us at that point. Our surgeons are Dr. Taylor, a pediatric plastic surgeon, and Dr. Heuer, a pediatric neurosurgeon.Then a nurse will take Leah from us, and they will give her general anesthesia through a mask. The nurse said that takes usually only a few seconds, and after she is asleep they will place her IV and finish surgical preparations.
The nurse said the surgeons had reserved the operating room for 4 hours, but she said that they always underestimate how long surgery will take because they only count the time they will need, rather than the pre-op and anesthesia time, so we are preparing for a bit more. A nurse will come to our waiting room every hour to provide us with updates, and when the surgery is over, our surgeons will come out to review the procedure with us again and let us know what to expect. Leah will go right to the pediatric intensive care unit, where she will stay for about 24 hours if all goes well. We will meet her there, and one of us will be able to stay in the PICU with her overnight (though they warned us that we shouldn't expect to get any sleep while there).
Because we have done a good deal of research, we know to prepare for substantial swelling, especially around Leah's eyes. We also know that the swelling will get worse over the next 48 hours, as excess fluid around her skull tries to drain. The surgeons will install a drain, but it won't be able to clear all the fluid, so her eyes will likely swell shut. That's going to be hard for her, because she won't understand why she can't see. We are preparing for that by taking a few of her softest stuffed animals and blankets (many of whom have been given to us by wonderful friends in the last days) and sleeping with them now so they will smell like us when she holds them in the hospital. I'm not sure how comforting that will be, given the amount of pain she is going to be in, but at this point we are willing to try whatever we can to make her feel more comfortable.
The nurses are hesitant to give us much information about what will happen after that first 24-48 hours because it depends so much on how the surgery goes and on how Leah responds to it. We expect to be in the main part of the hospital after the first 24 hours, though, and to stay there for an additional three to five days. Some of that is dependent on how quickly the swelling around her skull goes down, which will allow them to remove her drain, and some of it depends on whether or not she shows signs of infection and needs to be given antibiotics.
We also met with an anesthesiologist who wants to enter Leah into a clinical trial for FDA approval of IV Tylenol in babies younger than 6 months of age. She explained that usually babies are administered morphine when they indicate they are in pain after surgery, but in the clinical trial they would be administered Tylenol instead. I had to ask how they determine if babies are in pain at this age, and she explained their 10 point scale that assesses facial expression, vocalization, arm and leg movement, etc. She assured us that with or without the clinical trial, Leah would be given pain medication sufficient to alleviate any of her pain, so we opted to participate in the trial since it seems not to have any ill effects, and would only mean that she would possibly have less exposure to morphine.
Finally, we went to the lab to have Leah's blood drawn for type during the transfusions. We know she is A-, but the hospital obviously can't take our word for it, so they collect samples. They will use the same samples to do the genetic screening as well, so she only had one pin prick. Only one parent was allowed in the lab, and David volunteered, but I heard every scream from the waiting room, so I know she wasn't a big fan of the process.
We were then instructed to call the hospital between 3:30 pm and 6:00 pm to be assigned an arrival time, and to be instructed AGAIN about the feeding instructions. The nurse over the phone told us to arrive at 6:00 am on Monday, so we are going to take advantage of this weekend to get some extra rest.
