Antibiotics for the winter

I've started trying to post once a day, but I talked to Cincinnati after I posted. Another test came back normal. Fiona is having some sleeping trouble, sometimes too little, sometimes too much. She also has a low grade fever. They've checked for lots of viruses, but nothing has come back positive. In an effort to add an extra layer of protection she's starting amoxicillin for the winter. Hopefully it will prevent any bacterial infections. Now all we have to worry about are viruses. The IGG we give her comes from a huge donor pool and temporarily transfers their immunity to her, so it will help with viruses. The last part of her protection comes from an antibiotic they give to people with t-cell deficiencies called bactrim. Bactrim should protect her from opportunistic infections. So to recap, she takes IGG to replace what her b cells aren't making, bactrim to protect her because of her low t-cell counts, and amoxicillin to cover all of the bases.

Fiona's fundraiser

little bird

Christian and I were talking a few days ago about how fitting we think the bird in the cage at the top of Fiona's blog is. When my dear friend designed it for us I loved the bird, and as I've looked at it for a few months I've grown to love it more. There are a few reasons we feel it fits our situation so well. First, we think it represents Fiona and the layer of protection we try to wrap around her. Second, we feel caged by not finding the real problem. Having a better diagnosis would be so freeing. Third, Fiona is like a tiny trapped bird. She can't go out, she can't see other kids her age. She is so limited by her immune condition. She used to run for the door when it opened to try to get out, but now she's forgetting to try to escape. That makes me sad.

Yesterday our wall hand sanitizer dispenser came in the mail. I never thought I would love having hospital equipment stuck on the wall of my front hall. It doesn't look as bad as I thought it would. It is a novelty for the kids, especially James, who has the cleanest hands he's ever had! I'm starting to wonder how long each package of hand sanitizer will last?

treatment changes

Fiona's fundraiser

Last week's treatment was pretty painful for Fiona. We looked into lots of skin numbing products and got permission from our doctor to try 20% benzocaine. I went to our local Walgreen's and asked our awesome pharmacist if she had any suggestions. She suggested trying teething ointment. Brilliant idea! It didn't work as well as lidocaine, but with Tylenol the sticks were much better. We're thirty minutes into the infusion, and she only complained when I stuck her.

Along with a new bigger pump we have new bigger syringes. I was very surprised by the difference in function. The smaller syringes were smoother to push (does that even make sense?). The bigger syringes are also more difficult to hold in my hand while sticking her and opening the bandages. The old syringes had blue caps on the ends, but the new ones have caps attached to the plunger, which have to be broken out of the plunger. I'm sure in time I'll get used to the changes.

You can see the new syringe at the bottom. It holds up to 50ml, or 10 teaspoons.

Fundraiser update

Thank you to all of the amazing people in our lives who have donated outside of the fundraiser. In the past few weeks we've been given more than $2,000. With every donation I can feel my stress level go down. Knowing that we will meet the out of pocket for our insurance in the next two weeks is a scary feeling. I'll be glad once we have though because it will be done for the year.

We've learned a lot about Fiona's medical expenses in the past week, and I'm sure we'll learn a lot more in the next two weeks. We have learned that most of her visits to Cincinnati Children's are about $9,000. We still don't know how much we will be charged by the medical supply company for Fiona's infusion medication.

Fiona's fundraiser

reminder

Today I've been reminded that we are the lucky ones. Fiona is growing. Fiona isn't sick. No matter how scary or how difficult this is for us, we are blessed. Her infusions and antibiotics are protecting her. What we're doing now is keeping her safe until we can figure this out.

Fiona's fundraiser

new pump!

Our medical supply company sent us a new electronic pump that will accommodate 50 mls. Her current dose is 5 gms in 25 mls. That means they can double the dose she's on before she'll need a new pump. The new pump also allows a longer infusion time, which may help her feel less pain as the medicine goes in. When we got the first pump I thought it would last us at least a year. It's been 2 months and they've almost doubled her original dose.

I've been going over our insurance statements. Because we paid our out of pocket so early we haven't seen any of the statements in a few months. Since Fiona was diagnosed in July they've paid out over $78,000 (that doesn't include her hizentra or infusion supplies). I'm pretty sure we will reach our deductible and out of pocket in January. I'm so thankful for insurance!

Fiona's fundraiser

What I want...

Another test came back from an outside lab. In the charting system I have access to I can't see outside lab results. Once again I am impatiently waiting. I'm sure that if it was something really important they would have called me by now. Being in diagnosis limbo really messes with your perspective. I want to know things, and I want to know them now. I used to be such a patient person, I think I need to work on that.