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.

Poor kid

What happens when you have two stomach viruses and take diflucan? You don't want to know. It was bad. Fiona had to have a bath. She has a really bad diaper rash, but at least it won't have yeast on it.

Fiona's mouth looks much better after 2 days of diflucan. She is eating a little more, but is still having trouble drinking. We have been able to avoid dehydration. I'm glad she's going to see a doctor tomorrow.

Today is treatment day, and I'm beyond excited to have supplies from BioRx again. Our rep found the tape we love, which is nice, because I've been buying it for $8 a roll. She also sent us barrier skin wipes, which aren't quite as sticky as the ones I found at Walgreens. This week we are trying a high flow needle set. I've heard that some people don't like them, but I'm trying to keep an open mind.

Fiona is feeling restless lately. After her brief taste of freedom she tries to escape the house every time the door opens. She cries when we drop James off at preschool. She wants to go to. I am grieving for her lost experiences. She'll never go to preschool, or nursery at church. I'm not sure she'll ever go to school. I'm going to ask the doctor tomorrow if it is safe for her to go to the zoo. She really loves animals, and this may be a good way to get her out of the house. We'll go when it's not crowded, keep her in her stroller, and not take her into any of the buildings.

Today

After talking to our local doctor's office and Cincinnati the plan is to switch Fiona to diflucan, which is a systemic antifungal. She has an appointment with our local doctor on Monday. Hopefully her thrush will clear up over the weekend.

I'm still trying to understand whether or not her stomach viruses are contagious. We don't know how long it will take for her body to clear the viruses. I read a journal article yesterday that said the mean time frame for someone with a compromised immune system to clear norovirus is 3 months. Ugh! I'm not comfortable taking her anywhere because I don't want her spreading a virus, and because the virus may be weakening her immune system.

Today we got our first box of hizentra and supplies from our old specialty pharmacy since January! They were able to find the tape we love, 3M kind tape, and skin barrier wipes. We are back to using 2 bottles for each infusion, instead of 5.

It's easy to forget that there is anything wrong when Fiona is healthy, but when she gets sick, she really gets sick. Hopefully it won't take 3 months for her to get better.

thrush still

Fiona still has thrush. The thrush on her bottom lip is almost gone, but her top lip still has white patches. I'm not sure how long it takes for nystatin to work. I've called our local doctor to have her checked. I wonder if she needs something stronger because of her low t-cells?

isolation or exposure

In the past we've talked about whether or not we should keep Fiona isolated. It seems like most exposure leads to one or more viruses. As a parent my first instinct is to protect her from the outside world. Last winter she was healthy. Once we started exposing her she was sick. It seems like an easy choice not to expose her. We'll be talking to her doctors about continuing isolation.

When she gets sick her responses are strange. I know this sounds funny, but she has norovirus and adenovirus, and she isn't throwing up. In fact we only found it because I told the doctor she had diarrhea, and she was complaining of stomach pain. I almost didn't tell him about the diarrhea, because it wasn't that bad. It seems like she should be sicker, which makes me wonder if her immune system isn't responding to illness?

skin barrier wipes

During yesterday's treatment we tried a new product called a skin barrier wipe. After I stuck her I wiped it on the skin around the butterfly of the needle. It's really messy, sticky stuff. Once it dried I put on her clear bandage and continued with her treatment. Peeling off the clear bandage was much easier than without the skin barrier, and less irritating to her skin. In the future I'll look for water soluble skin barrier wipes, the ones I used left a mess on my fingers, and could only be cleaned with alcohol. Another solution would be to wear gloves when handling the wipes. I found these at Walgreens. They were about $15 for 50 wipes, and I use three wipes for each treatment. I'm going to ask our specialty pharmacy to see if they can get them for me.

thrush

Fiona has thrush. I knew this was a risk because she's on an antibiotic, and her resistance to candida (the fungus that causes thrush and yeast infections) is reduced by her immune deficiency. In fact I'm surprised that it didn't happen sooner. I called Cincinnati and they are sending in a prescription for nystatin. If that doesn't work they'll give her something stronger. We also have to boil her pacifiers then replace them once the thrush is gone. I'm pretty sure we'll have to do the same with her sippy cups.

good news

Fiona's blood test came back negative for adenovirus. If we can keep her hydrated we'll avoid the hospital. For a sick kid she's got plenty of energy.

viruses

Fiona tested positive for two viruses, adenovirus and norovirus. She doesn't seem to ever get just one thing. She's had some diarrhea and stomach pain in the past few days, so they tested a stool sample yesterday. They did the same test in January, and everything was negative. When they ordered these tests I expected the same results. A new strain of norovirus is going around, and no one in the country is immune to it, so I wasn't surprised that she had it. Adenovirus is more troubling. I'll feel better when the blood test comes back.

The plan is to watch and wait. Her igg is down a little from the last test, but it's still good, over 900. We aren't going to lower her dose of hizentra as previously planned. We have to make sure she is hydrated. They are testing to see if she has adenovirus in her blood, which would change treatment to an aggressive IV medicine in the hospital. We don't know how long she will be infected. From now on when she goes to Cincinnati she will be put in isolation to prevent other patients from being infected.

We are going to put her back in isolation. We were cautiously exposing her to the world. Maybe that wasn't such a great idea. Last week I was walking through the grocery store and I had a feeling that I should restock my hospital travel bag, because she was going to get sick. I picked up some small toiletries, and really didn't think of it again until this morning when the test results came back. Christian joked that he's going to start calling me Moses.

We don't have any idea how she will respond to these viruses. We don't know how long she'll be infected or contagious. I feel a little helpless. For me that's the hardest part.

Cincinnati yesterday, local doctor today

We went to Cincinnati yesterday. We had a great conversation with Fiona's doctor. I think Christian understands the way a thymus works, and how that impacts a bone marrow transplant. There are some things a transplant won't fix, things that are structurally wrong with the thymus wouldn't be cured. Fiona is a strange case. Most kids with her symptoms are more easily diagnosed with standard lab testing.

Because of Fiona's recent crankiness post treatment, we are reducing her dose of hizentra (igg) by 1 gram. We raised the dose during flu season to better protect her from illness. Now that flu season is over we are hoping that the lower dose will help turn our beast back into a princess.

This weekend Fiona started complaining of stomach pain. She would stop playing, start crying, and say "ow ow ow". They are testing to see if she has any intestinal infections, markers for inflammation, or parasites. If they don't find anything we will probably do some scopes to take a look at her belly.

We have some labs back from her visit yesterday. There are some changes that I'm going to ask about. On her CBC they noted microcytes, which are smaller than normal red blood cells. Microcytes can signal anemia. Her lymphocytes (combined antibodies and t-cells) are lower than we've ever seen them. I'll be interested to see what her t-cell counts are. Her neutrophil count is going down too, which can be a side effect of Bactrim, the antibiotic she takes on weekends.

Today we go back to our local doctor, an infectious disease specialist. I like that we have two doctors who understand her issues so well. When something goes wrong we have two doctors working to figure it out.

treatment, and plumbing update

Fiona has been having a difficult time with infusion day. She does great with the treatment. About two hours later our lovely princess turns into a beast. The crankiness continues on Monday and has usually resolved by Tuesday, but not this week. She's also complaining of pain under her ribs on the right side. I think I may take her to be seen this afternoon.

Our adjuster came and looked at the damage yesterday. They are replacing the carpet in our dining room and living room. They are also replacing the linoleum in the bathroom, hall and kitchen. That's 2/3 of the flooring downstairs!