cleft palate surgery

It's 6:30 AM on Tuesday in the Pediatric Intensive Care Unit and here we are with our little D. Dalia's surgery was yesterday. Both the ear tubes and the palate repair surgeries went well, nothing unusual, though her ears were terribly clogged with fluid on top of hardened layers of old fluid. But. She lost a lot of blood during the surgery, which lasted 4 and 1/2 hours rather than 2 1/2. After 3 hours and not hearing anything, I started to get worried. They think that her bleeding is a side effect of her INH medication (for positive TB), which causes a decrease in platelets. Her platelet count went down to 40; normal starts at 150. So...they kept her in the OR, gave her a blood transfusion and a platelet transfusion, then moved her to the PICU, with a breathing tube, sedation medicine in a drip and more as needed if she "wakes up", IV fluids and anti-inflammatroies.

She did wake up a few times when we were here last night. Man, is that little girl strong! As the nurses said this morning when switching over shifts, “Dalia gets up with a bang. I had to ask the parents to help hold her down. It took four people to hold her til we gave her the Versed.” “Dalia’s got game!.”

And since writing… she just woke up again for many minutes, blew through all kinds of additional sedation while Jeanne added more. The respiratory specialist is here, too. The pediatrician last night said “she’s a professional,” i.e. she takes a lot of sedation…

All of her nurses here, Pat (male), Katie (overnight) and now Jeanne have been wonderful. Her hair was sticking straight up and full of gunk -- blood, saline, who knows - it was punk rock. Katie washed it over night and she looks much better.

The positive aspect of her being sedated all night is that she wasn't able to squirm around and use her tongue to fidget with her palate. Palate had a chance to heal a bit. What we are hoping for is that the blood is clotting properly (and not going in to her lungs) so she can breathe on her own without bleeding.

So far so good. The (second) anesthesiologist from her surgery stopped by, as did Dr. Laub, her surgeon. He took a look in her mouth - looks good.

Sunday night (before surgery) we didn’t sleep too well as Dalia decided to wake up from 2-3:30 to have some conversation about the previous day’s events. “Horsey. Dalia. Horsey. Neigh!” then a review of select body parts: “Toe. Leg. Arm, Nose. Hair. Hair. Hair.” then family “Nana. Gaga. Dalia. Guh Guh. Hen. Cawker.”

We got to the hospital at 6 AM thinking that her surgery was at 7:45 AM. Turns out it was at 10:45. Dalia, her usual good-spirited and curious self, had a blast looking through magazines at colorful photos, practicing her words, looking at the art up and down the halls, going around the revolving doors, and then playing with the wonderful toys once we waited in the pre-op area. We played with 2 Child Life specialists, and our friend Gretchen came to visit again.

Tal and I spent the night in the “teen room” up on Baird 5, the pediatrics ward where Dalia will likely be moved to today. Amidst the playstations, the tv, the fusbol game, the air hockey and books, we slept on the pull-out couch. The nurses let me into the Ronald McDonald House family room this morning -- what a pleasure. I took a shower and made some tea for me and coffee for Tal, then rushed down to see Dalia.

Over the weekend, I thought, “Dalia’s biological parents must be some kind of amazing people. I could never have created this kid!” Sometimes I get really sad for them. But then I realize that those are my emotions. Maybe they were relieved to place Dalia in others’ care. I will never know. All I can do is be grateful, and hope that when they think of her, they believe that she is well loved and healthy, their special little girl.

… more later.