pentamidine

Fiona is scheduled to get her first dose of pentamidine on March 1st. I'm a little worried, but feel better that it's scheduled. I talked to our care coordinator this morning and have a better understanding of the process. It will take about 2 hours to give her the IV. The biggest risk is increased heart rate. If her heart rate increases they would stop the IV and restart it at a slower rate. They will also premedicate her. I'm not sure what the premeds are yet.

I should have Fiona's latest labs today or tomorrow. I'm really curious to see what her lymphocyte levels are now that she hasn't had a virus in over a month. Hopefully they're higher. We go back to Cincinnati on April 1st.

We hit our $8,000 out of pocket this month. I think we will be able to use $3,499 of the copay assistance Hizentra offers. Now we wait to get the medical bills. If the website is right we will need to pay just over $4,000 in medical bills. Thanks to generous donations we were able to pay off last year's bills, and have a start on this year. Fiona's medical fund has helped so much!

opportunistic infections

Because Fiona can't take Bactrim she's at risk for opportunistic infections. The one they are most worried about is pneumocystis pneumonia, or PCP. We are working on getting her started on another medicine called Pentamidine. It has to be administered in an IV, and they have to monitor her heart while they give it to her. I'm a little nervous about it.

We drew labs on Monday to check Fiona's lymphocytes. I'm still waiting to see the results. One of the things I love most about Cincinnati Children's is that they post her labs to her account. I usually have the results within a day. I hate waiting for someone to call me with her results.

Updates

I've been working on this post for at lease a week. Things have been so crazy I haven't had time to finish it. Christian had surgery last Friday, so I decided to just post this and write a new post to update for the past week.

We want to thank everyone who supported our City Barbeque! It was an amazing day for us, we took all of the kids to dinner, thanks Grandpa! Because Fiona rarely leaves the house, she loved it. We raised $459.43! We also want to thank the donors to her online fundraiser.

We reached our $5,000 deductible before the end of January. Most of the cost was at the pharmacy. Fiona's medicine was almost $3,200. We think the manufacturer's copay assistance will pay that, plus the cost of her medicine until we reach our $8,000 out of pocket maximum. With the money from the fundraiser we think we can pay the rest of the medical bills from last year, and keep up with this year. I'm keeping my fingers crossed.

We got Fiona's beads of courage necklace and beads a few weeks ago. She has too many beads to fit on one necklace. Each bead represents a blood draw, infusion, lab test, hospital stay, proceedure, etc... Looking at her beads was sad for me. She's been through so much, fought so much, and she's been so brave. My hope for her is that someday she'll be cured, and she won't have any more beads to add to her necklace.

Because Fiona's t-cell counts were so low in December we are going to recheck her lymphocyte counts again next week. Her last helper t-cell (cd4) count was 131. To understand how bad that is, an HIV diagnosis changes to an AIDS diagnosis when their count drops below 200. At 150 they would diagnose advanced AIDS. She doesn't have HIV or AIDS. She was born with an unknown genetic defect that is causing her immune system to fail. Hopefully her numbers will be a little higher. They may have been lower last time because she was sick.

We figured out that Fiona's restlessness and irritibility wasn't caused by her infusions. It's caused by her preventative antibiotic, so I stopped giving it to her. Our doctor came up with a new dosing schedule, but she's still miserable. I'm lowering the dose and hoping that she can stay on it. The only benefit of not taking it is that it can lower your immune counts. She is now at high risk for opportunistic infections. Those are infections normal people wouldn't get.