Chris, Kai and I spent most of today at the hospital and now have a much better understanding of what lies ahead. A day of meetings with cardiologists, nurses, social workers, child life specialists, lab technicians and staff. A lot of taking shirts and socks on and off, answering the same questions over and over again, watching cartoons, collecting stickers, crossing paths with other hospitalized children and their families in the waiting rooms. That part was very intense for me; to see children who'd gone through surgery just recently and to see the mixture of worry, fatigue, courage and resignation on the parents' faces. A brief glimpse into the crystal ball.
First on the schedule were an ekg and hour-long echocardiogram. We'd done both of these two months ago, but this time they wanted to get a better view of the coarctation itself, to see how long and thick it is. The coarctation turned out to be longer than initially thought. It was hard for them to see exactly how long it is which means that he might still need an MRI right before surgery. An MRI would offer a complete view of the coarctation and give the surgeon important information about how much to cut out. If the coarctation is too long, simply sewing the ends of the incision back together again would not work. They would need a graft. Not very encouraging news as the MRI would also mean that Kai would spend an extra hour under anesthesia. They did find that he has developed some collateral bypass vessels that help provide blood flow down to his lower extremities. This is good news, as it lessens the risk of paralysis associated with clamping off the blood flow through the spinal cord during surgery. Once the normal blood flow has been restored, these collaterals disintegrate over time.
Kai was a great sport and very cooperative. While sticking the ekg and echo sensors onto his stomach and chest, the technician asked whether he was ticklish. He answered "Yes ... but I love tickles."
After the tests, we got a tour of the general recovery area where Kai will, in the best-case scenario, spend 3-4 days after he leaves the overnight intensive care station. The facility was pretty crowded with every single bed occupied. Each room has three beds for pediatric patients and one sofa bed for a parent. I had hoped that one of us would be able to spend the nights in the hospital with Kai, but it looks like that may not work, as certainly a parent coming from afar should have priority. That was disheartening, as I'd like to minimize the time that Kai is alone. The floor has a pretty nice playroom with a fish tank, big train set, play telephone booth and other toys. They encourage the children to start walking the day after surgery and the playroom is a good motivator. The top floor has a spacious and light-filled family room with a library, computers, arts and crafts area, sofas and kitchenette area. On Thursday evenings, they have musical events there. The room leads out onto an outdoor rooftop terrace with a big play structure. That was the nicest area of the hospital. The Children's Hospital is currently undergoing construction, so eventually the facilities will be larger and more modern.
As part of the recovery experience, we can request that a musician come by and play music at Kai's bedside. A therapy dog can also drop by for a visit. For each procedure (ekg, echo, surgery, blood draw, radiation, intensive care unit, in/extubation), Kai collects a colored bead to make a necklace that will tell the tale of his hospital stay.
We then had a somewhat rushed meeting with our cardiologist, Dr. Armstrong, who explained what she saw (and didn't see) on the echocardiogram. She did reassure us, though, that given what she had seen of Kai's coarctation, surgery was really the only way to go. The less invasive balloon angioplasty (a technique in which she specializes) would not have worked for his particular anatomy and the character of his coarctation. It was good to have her definitively confirm our decision.
At the packed cafeteria, we learned what not to order again. A large window overlooking the tree tops of the arboretum and vast sky covered one entire side of the room. The cafeteria made somewhat of an impression on Kai because, when asked about his day later on, he replied that he drank some chocolate milk there.
After lunch we met with one of the social workers who introduced Kai to the different medical instruments and let him perform some medical tests on a hospital bear (picture above). She told us that this kind of medical play is particularly helpful after surgery when children process what they have experienced through play. She took us into a surgery preparation room where children go right before and after surgery. The room was packed with children of all ages preparing for or recovering from surgery. We didn't go into the actual surgery rooms, of course, but peered down a long light-blue hallway with a dozen white doctor's gowns hanging along the wall. We were sent home with a big bag of protective and anesthesia masks, rubber gloves, a head covering, and a few stress-release toys.
The formalities and practicalities of the surgery were presented to us at the very end. One interesting tidbit that could have been mentioned much sooner: don't take ibuprofen for 2 full weeks in advance of the surgery. One of the immune-boosting supplements I have been giving Kai recently to ward off colds etc contains echinacea. That is apparently a no-no for surgery-bound individuals as it can cause excessive bleeding. The nurse reassured me, though, that everything would be okay if he was off echinacea for this last week before surgery.
We have been reading hospital books to Kai and playing with the medical kit, but haven't told him yet that he will be hospitalized. So, he caught us a bit off guard with a question he asked over lunch: "So, what are WE doing here?" We explained that we were visiting the places described in his books and learning about how a hospital works. That seemed to satisfy him, a bit.
