I’m sorry to keep you waiting for an update…this will be brief because I’ve been learning about wiring diagrams all day and my brain is fried. [OK…it didn’t turn out to be that brief but you’re probably used to that by now.]
On Sunday we drove the whole family down to Yale-New Haven Children’s Hospital to meet with Dr. Rivkees. It was kind of surreal being in a deserted section of the hospital and having a security guard come up to unlock the door and let us into the center. You’d think the Section Chief would have a key but apparently not.
While we were waiting in the reception area for the guard, we started discussing pediatric thyroid treatment and Norah’s case, while the kids explored the waiting room toys and climbed on the furniture like animals. Dr. Rivkees was WAY more patient with them than I was, which continued through our 1 1/2-hour meeting. He talked a lot about statistics and hopefully I’ve got these right. He said that about 300 kids/year have their thyroids removed, but 200 of them are due to thyroid cancer and most of them are older than Norah. There are only about 10 kids/year that are less than 5 years old who have their thyroid removed due to Graves Disease. She belongs to an elite group.
Dr. Rivkees went through everything from our phone call again, so Ben was able to catch up on anything I forgot to tell him. He looked at Norah, scanned through her paperwork and lab results, and reiterated that surgery was the correct approach for Norah. I had very much hoped to avoid surgery or RAI, but I’m now on-board with the surgery.
One thing that helped me accept this plan was our discussion about remission. It takes time to go into remission, and medication can give a patient time. The medication doesn’t help the patient go into remission, it just keeps their thyroid levels within range until eventually sometimes they go into remission. Dr. Rivkees said that it had only happened with one of their pediatric patients. When a child develops Graves at such a young age, it’s kind of like juvenile diabetes – it doesn’t typically resolve itself. High thyroid levels and a large goiter (both of which Norah has), also reduce the chances of remission. If she could take medication to give her body some time to work through the problem, there might be a few percent chance she would go into remission. But she doesn’t have the luxury of time since she’s allergic to the medication.
Another thing Dr. Rivkees told me was that 1 in 2,000 babies are born without a thyroid, which is why babies have a heel-stick at birth. Those kids are on synthroid forever (like me). Hypothyroidism is much easier to manage and Norah will only have to be tested every 6 months to make sure she’s on the right dose.
On Monday I called to schedule a pre-op appointment with the surgeon and the secretary was so confused because Norah wasn’t in the system. She asked if we had registered at the hospital and I said that there wasn’t anyone around when we came in on Sunday. She asked if Dr. Rivkees had us fill out any forms and I told her no, but he had written Norah’s name down on his pad. 🙂
So surgery is scheduled for October 7th, and Norah will be there overnight in the PICU with one-on-one nursing care to watch for bleeding. During the first 12 hours, there’s a slim chance that a ligature could come loose and she would have to go back to the O.R. for a repair. The next day she can go home and resume normal activity, except that she’s supposed to be careful about impacting her neck for a few days, so no football, hockey, or bike-riding. I asked Dr. Rivkees whether there were limitations on her activities and he said, “I’m not sure how you could limit Norah.” He got her number very quickly. She will be able to go back to school after the holiday weekend.
Through all of this, Norah is doing really well. She is much calmer than she was a few months ago, and is doing a great job in her preschool class. She loved Dr. Rivkees and she doesn’t seem worried about the surgery. She doesn’t want to have a shot or have blood taken out, but when she has to, she’s very brave. She keeps telling everyone that we’re going to have a sleepover at the hospital…I think she’s excited about having us all to herself for a night. She’s on a different medication to control her hyperthyroidism until the surgery (PTU). This is the medicine that’s no longer considered safe for kids because it has caused liver damage in some, but the doctor feels that it is fine for the short term, and we will be monitoring her liver function over the next two weeks. Going into surgery with controlled hyperthyroidism reduces potential complications, so the risk of a problem with the medicine is theoretically worth the reward. So far, so good.
That’s all I can think of for now…I’ll write more about the Dream Team later.
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