What a week!

Last week was not spent quite how I planned to. On Tuesday, Dallin had an appointment with the Nephrologist (kidney specialist) at the children's hospital in Indianapolis. That's a little over an hour from us, so it's not too far, but you have to plan for it. We saw the doctor, and he got his blood drawn, an ultrasound of his kidneys, and gave a urine sample. (Is it weird that I would rather he get blood drawn than a urine sample? At least with the blood I just hold him while someone else pokes him, but I do not like being the one who has to peel a very strongly adhered bag from his body.)

This was the first time meeting with this doctor and Dallin's first time seeing a Nephrologist since the one in Utah 2 months ago. It went pretty well. She was mainly concerned with his blood pressure being high and about his diet (just like everyone else.) I mentioned the low calcium formula that was being mailed to us and the plan to start him on that as soon as it got to us and she agreed that it would be good to start him on that. The doctor told me she would call in a few days to go over the lab results with me, and then we left.

It was about 5:30 pm and I had just gotten home from Indianapolis and picking Mckay up from school when I got a phone call from the Nephrologist. She said that Dallin's lab results had come back and that the calcium levels in his blood were extremely high. To give you an idea of how high, a normal calcium level would be from about 7 - 10.5. His calcium level was 15.2. She said that we needed to come back immediately to the emergency room. We talked to her for a few minutes and asked if it was really that necessary to take him to an ER an hour away. She felt it was. We called a few other people, including our nephrologist in Utah, and they said we should go to the ER.

We packed a few quick items, got in the car, and drove all the way back to the hospital. The doctor told us that she had notified the ER and that they would be expecting us. We got to the ER and checked in and they seemed to be in no hurry. We told them that the doctor had said they would be ready for us, but the ER nurses said they didn't have any beds and we'd have to wait. After waiting for an hour, they took us back. I've decided that if you need to go to the ER you should go in an ambulance. You get much faster service. Both times we've had ER/ambulance experiences (one for Mckay, one for Dallin), a room was ready for us as soon as we pulled up. I do not like being told that I need to rush my son to an ER, and then waiting around for an hour.

They got him a gown and a bed and still seemed in no hurry to do anything.

They asked us a ton of questions. They almost seemed more concerned about his other issues (low weight, not eating "normal" food, not walking, developmentally behind) than his calcium levels. I wanted to say, "Look guys, we know exactly why those other things are happening and they are being treated just fine already by the proper medical assistance. The only thing I need from you is an IV and drugs to lower his calcium!"

Dallin of course had no idea what was going on. He was just happy that he got to stay up past bedtime and play with his daddy.

Finally we had some nurses come put an IV in his arm. More nurses volunteered for the job than was actually needed. They just wanted to come play with Dallin.

At 1:30am we were finally admitted to the hospital and got checked into a room. We all tried to get some sleep, but it's hard to sleep when nurses keep coming in every 2 hours to take his vitals, give him medication, or draw his blood. And it was a shared room so we were woken up when they came in for the other patient too.

In the morning we talked to a bunch of doctors. This was a teaching hospital, so we had a lot of doctors "practicing" with us. And of course, Dallin is a medical rarity, so a bunch of doctors asked if they could come in just to listen to his heart or examine a patient with Williams Syndrome. I'm glad we could help them learn! Our team of doctors told us that the IV and medication he had was helping to flush the excess calcium out of his body. The blood test from that morning showed that his calcium had come down, but they wanted to get it much lower before releasing him. So we spent 4 days in the hospital waiting for his calcium to come down. Mckay talked to his teachers and worked out missing class so he could stay with us in the hospital.

Dallin was a good sport about the whole thing. He got really sick of being confined to a hospital bed, but he found ways to entertain himself.

Like eating the wires and IV attached to him.

He played with mommy and daddy.

He pulled the sensor off his finger.

He also did some not so fun things. He had to get his blood drawn 2 times a day. It was nice to see how his calcium levels were doing each day, but it was not fun to see him get poked so much. They always had a hard time finding a good vein. And once it was used, they couldn't use the vein again, so they were running out of places to stick him by the end of the week. One time they drew blood from a vein on his head.

He did not like that one very much. At least it was a really good vein and they were finished pretty quickly.

They also took his blood pressure a lot. He has always hated getting his blood pressure taken. Maybe it's the cuff squeezing him? I'm not sure, but he always cries. By the end of the week, he was so used to it, he wouldn't even make a sound when they took it. He would just smile and keep playing with his toys. His high blood pressure was related to the high calcium, so they wanted to get his blood pressure lower before releasing him as well. He is on a medication for it that has been keeping his blood pressure consistently low.

We didn't plan on being there that long and we did not bring enough extra clothes. The wonderful Ronald McDonald House organization saved our lives. They had showers, laundry facilities and a kitchen for families of patients to use anytime they wanted for free. They had snacks and meals every day made by volunteers, so we never starved. It is a great organization and I'm so grateful we were able to benefit from it. And we didn't have to wear dirty clothes the whole time!

Part of Dallin's medical plan for lowering his calcium was that we start him on the low calcium formula immediately and begin weaning from breast milk. I was already planning on doing this but not quite so abruptly. It's going ok though and he seems to be handling the change to bottles pretty well.

Saturday morning, the doctors said his calcium was low enough to release him. It was still a little high (12.2), but it would keep getting lower with continued medication at home and continued weaning to the formula. The medication that lowers his calcium also lowers his potassium, so he has to take medicine to keep his potassium up. We were released from the hospital with three prescriptions: calcium meds, potassium meds and blood pressure meds. He is supposed to have his blood drawn again on Wednesday to see how his calcium level is doing and a follow up with the doctor in 3 weeks.

Now we're home and Dallin is loving being able to crawl around and have his freedom back. He has to take medicine 3 times a day and the only way to get him to take it is to put it in his bottle. I'm trying to adjust to making and washing bottles all day AND getting the right medicine in the right bottle at the right time. It's a bit of a hassle.

It wasn't very much fun, but I'm glad we are getting his calcium situation taken care of. We had some really great doctors and a few great nurses in the hospital and that always makes things a little better. We were approved for Medicaid literally the day before all this happened, and I am so grateful for that! If it weren't for Medicaid, we would be in so much debt from all Dallin's medical bills.

This experience made me realize how lucky we were to be so close to family in Utah. When Dallin was hospitalized before at 3 weeks old, my siblings came to visit, brought us food and kept us company. No one could come visit us here since we're so far away from everybody and it got lonely. But we did appreciate the people that called to see how things were going.

So that was our fun experience! Now I'm off to do laundry and dishes and the things that were neglected for a week.