Another 24

We're here for another 24 hours to let cultures grow. Our doctor wants to be cautious because of her immune deficiency. They are giving her IV antibiotics every 12 hour in addition to her normal oral antibiotic. The last doctor to visit us thought Fiona was the cutest patient he had ever seen.

hospital update

There really isn't a lot to update. So far all of her labs have come back normal, except the ones that aren't ever normal. We are still waiting for some labs and a respiratory panel. She's started coughing, but doesn't have any other symptoms.

Hospital stays are hard, doctors and nurses come in every few hours. There are lots of unfamiliar noises, and we are in an isolation room, which has constant airflow. There is also a double door entry so when anyone comes in or our we hear both doors.

Our TV is broken, so Fiona is extra restless. She gets short burts of energy then wears herself out and sleeps for hours. I'm convinced that a day in the hospital is like a week on the outside.

Fiona is drinking normally, but isn't eating much. She's about to crash, just in time for the doctor to come in. We've been up since 4 am.

Finding ways to play.

She thought this was lots of fun!

admitted

Fiona's fundraiser

We went to see the doctor and ended up being sent to the hospital. Our doctor was worried when she slept through an exam. Her energy level is way down and she's very pale. They said to be prepared for a blood transfusion.

We're in the emergency room waiting for a lumbar puncture before they send us to a room. I'm not sure how long they'll keep her. Her IV wasn't as difficult to start as it usually is. They are giving her some medicine to help with the lumbar puncture.

She hates hospital wrist bands and spent the first five minutes trying to pick it off. She almost has it. It's just hanging on by a tiny section.

greyish

Fiona is pale, and kind of grey. She has dark circles under her eyes and her eyes are a little sunken. It may just be another of her mysterious things, like the low grade fever and stomach issues. We are taking her to the infectious disease specialist tomorrow to get checked and to get her blood counts checked. The nurse I talked to seemed pretty concerned. She told me that if anything changes to take her to the emergency room.

I ordered a box of pediatric masks today. We are going to try to start masking her when she leaves the house. I'm sure it will take some getting used to. Going to doctor's offices and the hospital are making me increasingly nervous. Eventually she will get sick, but I'm hoping a mask will give her a little extra protection.

Our amazing daughter Katherine is working to get Fiona's story on the news. She is very driven and determined to help her sister. She is always coming up with new ideas to reach more people.

Fiona's fundraiser

blessings

When we met with the GI doctor we also met with a fellow. Cincinnati Children's is a teaching hospital, so we see residents and fellows often. It was interesting to hear her perspective on Fiona. She was amazed at how normal Fiona looks. She said that immune deficiency kids don't grow well, and they are always sick. For a few months I've felt like we are so blessed that Fiona hasn't been sick. As more numbers start to drop her health is nothing short of miraculous.

We are still waiting for the last labs and genetic tests to come back. I always feel so sure that her test results will find the thing that will confirm a diagnosis. Unfortunately, so far they haven't. This week the doctor's have ordered 3 sets of stool samples. TMI? Probably. They are trying to see if she is leaking protien and lymphocytes in her gut. They are also checking to see if she has any infections or parasites.

Fiona's fundraiser

Nap time update

It's nap time so I can finally write an update. Fiona had a CT scan yesterday, and a consultation with a GI doctor. The CT didn't find much, some enlarged lymph nodes. I don't know what that means, or how serious it is, but our hematologist is out of the office until next week. I'm sure we'll hear from them soon if it's a problem.

Fiona charmed all of the doctors and nurses. They said she was the cutest patient of the day. Because of her sedation she wasn't supposed to walk for a few hours. Once we let her out of the stroller she climbed up to stand on a chair. One of the nurses tried to help her balance and she said, "HEY YOU!", which translates to "leave me alone, don't touch me!".

The GI is planning on doing an upper GI scope, a colonoscopy, and a camera capsule. He mentioned that while she was under hematology should do a bone marrow biopsy. We're waiting to see if hematology agrees. We think she will also have a scope of her lungs.

Now we wait. I hate waiting.

bad news

Today we saw our home doctor. Fiona's t-cell function fell. Fell doesn't really do it justice though. It's more like it jumped off a cliff. Her numbers are scary low. She's being quarantined to home. She can't leave the house except for doctor's appointments. She isn't allowed to go outside. We can't have live plants in the house. She'll probably start a diet that will limit bacteria on her food.

The doctor here thinks our next appointment with Cincinnati will be scheduling the bone marrow transplant. He said her t-cells and b cells are failing. I'm trying to be calm. It's not working out for me.