Tuesday, April 28, 2015

Surprise appointment

Yesterday I found out that Fiona could see gastroenterology (belly doctor) today, or we would have to wait until June to get in. I was worried that it would be a short appointment, but I was wrong. I really like the doctor we see. He is very thorough. His nurse is in the room taking notes and ordering tests while he tells us what he wants to do.

Today Fi got an xray, they ordered stool and urine tests, and they're scheduling an endoscopy and a colonoscopy. An endoscope is a camera they feed into her belly through her mouth to look at the stomach and large intestine. A colonoscopy is a camera they use to look at the small intestine. They will be looking for abnormalities, and lymph (fluid with white blood cells, protein, and albumin) leakage into her gut. Her xray results are back, and they look normal.

Fiona has been doing pretty well. Her stools are looser than normal this week. TMI? Probably. She also has some belly cramping. Usually that means she has a stomach virus. Her nasal discharge is thick and green. Usually that means she has a sinus infection, but allergy season is pretty bad this year, so it could be that. We'll see.

Here's what I'm thinking... Lymph is a fluid. It contains lymphocytes (t-cells, b cells, and natural killer (nk)) cells. Her b cell, and nk cell levels are normal. If she's leaking lymph, shouldn't all of her lymphocytes be low?

I bought her a bag of m&m's at the hospital gift shop. After she ate them I asked her what she wanted for lunch. "Candy!" was her reply. Then she fell asleep for most of the ride home.

Friday, April 10, 2015

new tests

Our trip to Cincinnati on Wednesday was an adventure! Just as we were leaving it started to rain, which quickly turned to hail, not the bouncy pea sized fluffy hail I grew up with. This hail was huge, quarter sized chunks of ice. We waited it out for about 40 minutes under the drive through at our favorite Walgreens. We had to go back home to drive some of the older kids to school because they couldn't get to the bus stop. Luckily even though we left 45 minutes late, and we had to drive through heavy rain, we were only 15 minutes late.

At the appointment our doctor talked about how Fiona doesn't present like a typical kid with an immune deficiency. She doesn't get that sick, she's growing well, and her body responds to infections. He thinks she may be losing t-cells in her digestive system, or in her lymphatic system. We're waiting for a call from gastroenterology to schedule a scope of her digestive system, and they want to check the vessels of her lymphatic system for leaks. They will inject dye into her lymphatic system and watch to see if it stays in the vessels. Some of you may remember that we've already tested for lymphocyte loss in her digestive system. The new testing will be more in depth.

The lymphatic system is made of organs, lymph nodes, and lymph ducts, with vessels that run between them like blood vessels, but instead of blood they carry lymph. Lymph is made of lymphocytes (white blood cells), and other fluids, including albumin. Since we've been testing, Fiona's albumin has been low. She's also had a slightly larger than normal belly since just after she was born. It may be that there is extra fluid accumulating in her abdomen. I'm hopeful that this might be the right diagnosis, but I'm trying not to be too invested, because every new test we try comes back normal.

We don't go back to immunology at Cincinnati Children's until July. For our next visit they're going to let us have her labs drawn here, which is good because the lab tech at our local doctor usually doesn't have to stick Fiona more than once. I like seeing her results before her visit, rather than waiting for them and calling the doctor after.

This week Fiona is creating artwork on our new carpet, ugh! Our steam cleaner has been able to remove everything so far, with the added benefit of extra clean carpet for Fiona to play on. I'm working on clearing out the kids outgrown clothes, and figuring out what they need for summer. It was 80 degrees here yesterday, so I better work fast.

Fiona's last antibiotic infusion was great! Only one poke, which surprised the nurses who remembered her from her previous visit. I have a new protocol for IV's and blood draws, we give her as many juice boxes as she'll drink, which add fluid and make her blood vessels bigger.