more test results

Fiona's helper t-cells are really low again. Normal range is 500-2400, her level is 139. Low helper cells explain the thrush. There are still lots of tests we're waiting for. The good news of the day is that her IGG level is 1030, well within normal range. That means her treatments are working, and giving her protection. I'll keep posting as her test results come back.

Possible genetic cause

Fiona had an appointment in Cincinnati today. They've found a gene mutation on the STK4 gene. We don't know if it is manifesting or not. They need to do more tests to see if it is causing her immune deficiency. Her mutation is one that hasn't been described before, she may be the first person to have it. I'll write more later as the tests come back. Our doctor cautioned us not to get our hopes up because they haven't finished all of the testing.

appointments

Fiona has an appointment with our local doctor tomorrow. A week from tomorrow we go to Cincinnati. I'm not sure what they will say about her thrush. I've decided to take away her binky. Even though we replaced them after she got over thrush last time, I'm worried that they still may be "infected".

A long overdue update

I just realized that it's been almost a month since I've written anything. Over the past month we've been exposing Fiona to the world. I take her to grocery stores, church, and to pick James up from preschool. We've talked about the children's museum and the zoo, but I'm not quite ready yet. Every exposure causes me to worry.

This week Fiona got thrush again. It was about a month ago that she had it the first time, twice in four and a half weeks. I stopped giving her amoxicillin after she got over her last case of thrush. She's on diflucan again. When I called they said that her doctor in Cincinnati may want to see her again. Our next appointment is in July. I'm not sure what this means yet. I'm expecting a call this afternoon.

A new test result came back. It was normal. She doesn't have hyper IGM syndrome. Hopefully someday a test will show us what she has.

Treatments have been going pretty well. Three weeks ago I decided to try a treatment without anti-anxiety meds. I gave her benadryl, tylenol, and numbing cream. She did really well. Two weeks ago I tried the same meds and her treatment was awful. She cried through most of it. Yesterday we switched from three needle sites to four, and we increased her infusion time from an hour and a half to two hours. It made a big difference. She was calm during the whole treatment.

She has developed diarrhea again. I'm going to ask for a stool culture again. Hopefully it's still the same viruses that she had before. We know that they may take some time to go away. She's also running low grade fevers, around 100 degrees.

having a life...

Yesterday our transplant coordinator said that somehow Fiona needs to have a life. She needs to get out. He said he thinks that we can take her to the zoo. Once it warms up a little we can take her outside, before 10am, and after 4pm (she can't be in the sun too much because of her antibiotic). Trying to protect a 2 year old from the world is a hard thing. She just wants to run and play. I just want to keep her healthy.

She looks good

We saw our local doctor today. He said she looks good. Of course she was running around his office climbing on everything. I forgot to ask about the zoo.

One of Fiona's labs came back showing that she has no resistance to tetanus. The actual number was 80, they want it to be over 4761. Her response to yeast was about a tenth of what it should be.

I keep having this feeling that she's about to get sicker. I'm not sure if it's just one of those funny feelings, or a real thing.

ER visit

Fiona had a fever this afternoon, so we went to the ER to get checked. Her white blood cells are high (for her), and they are culturing her blood to see if anything grows. They gave her rocephin, an antibiotic, and sent us home. Hurray!!!

One of the problems we have is in getting an accurate temperature. Her axillary temperature is always low, around 97, even when she has a fever. Because of risk of infection we can't take a rectal temperature. Ear thermometers are inaccurate. We have a temporal artery thermometer at home, but they don't have them in the hospital. She bites on oral thermometers, and won't let us put one under her tongue. I wonder if I take our thermometer to the hospital next time if they will let us use it?

Her thrush seems to be gone. We follow up with our local doctor tomorrow, and hopefully she will be able to stop taking diflucan, which is giving her horrible diarrhea.