June 29: Day -3

Mommy got Bella to crack a smile for her even through the fever...

Well, day number 2 of an apparent infection. Bella's temp has been elevated (febrile if you're a doc - stay tuned for more 'docisms' as they surface...) all day, and she threw up again tonight when we sat her up for only about 30 seconds. She was very docile during bandage changes and has been sleeping most of the day. The blood culture they drew last night came back positive for a bacteria, so they have adjusted her antibiotics to a more specific med that can treat it more directly.

Dr. Wagner came by today while Ang was here to check in. He mentioned that something like 90% of infections they see up here come from the stomach. This made me relax a little about obsessing over her wounds. I've had an ongoing issue with controlling this disease, and knowing that I can't control her gut, actually provides an opening for some serenity to creep in and calm me down. I will be as vigilant as ever, but I don't have to obsess. That's reassuring. When Bella got an infection, I blamed me/us for it. My irrational thinking was that if we keep her wounds in good shape, we can control whether she gets an infection. What folly.

Ang's best friend Jen came in to town last night for the week to help out and take Ang to the next episode of the Twilight! The two of them have been to the first two together, so it was really sweet of Jen to volunteer to come up so they wouldn't break their streak! Ang is a big Twilight fan and there was a period of several months where not a night would pass without seeing her in bed with a Stephanie Meyer book in her hands. Today, Jen took Ali to Nickelodeon Universe at Mall of America. Tomorrow, Jen and Ang go to "Eclipse," the latest episode of the series while Ali gets a play date with her new BFF Ellery. Me? I got a hall pass today to walk over to Applebee's to watch Spain beat Portugal in the World Cup Round of 16.

My biggest dilemma is that there are no games till Friday. First 3, then 2 matches a day have really helped the time pass and my brain shift gears! My other dilemma is that I seemed to have torn my lateral left meniscus again. That's the cartilage that acts as a shock absorber in your knee. I have torn my lateral (outside of the knee) meniscus in both knees previously and it is a very specific feeling. This happened when I played soccer two Saturdays ago. I have rested the knee since then fearing this is what I did, and I tried just jogging about 20 yards today and immediately could feel the pain with every step. That's a drag, because I'm not really in a position to get my knee operated on! Even though it is an outpatient procedure (arthroscopy), I was laid up for quite a bit on both prior occasions, not to mention 6 weeks of physical therapy. So, it'll have to wait till we're back in OC. That way, I can have my same orthopedic surgeon do the work again. It'll be like dejavu! It also makes me sad, because I was really looking forward to venting my stress out on the field. Sooo, my classical guitar made the trip over to the unit today, and I guess I'll be pouring my stress out through my fingers instead of my feet.

Trying to "air out" to cool off a little...

Yay! Tomorrow is Bella's last day on cytoxan! Weeeee! She began a new drug today also called cyclosporine, or CsA. It is an immunosuppressant used in transplants to help Ali's cells take root and start growing without Bella's cells killing them off. She will be on CsA for quite a while, and it will make her hair dark and increase her body hair, so she just may end up a brunette for a while after all. The hair effects go away once she is off the drug, but some patients report a permanent change in either their hair color or density. The other side effect is that her blood pressure will most likely go up from it. This actually already occurred. I do her vitals every 4 hours while I'm awake, and the nurses or nursing assistants do them overnight, and at one point today, Bella's BP was almost the same as mine. Mine usually runs 110 over 60 and hers was 103 over 58! That just didn't seem right. Up till today her BP was always in the 80s or 90s, but we hit triple digits on the CsA! Good times. Really, it's not too big a deal at this point. Just something else to watch and notice.

Alright. All in all, a pretty quiet day.

P.S. Check out the new video I put up... it's a grand tour of Bella's hospital room! Woo hoo!

P.P.S. Only one more day to pick up a copy of Bella's book and have half the proceeds go to DebRA! Please consider buying a copy if you haven't already. Thank you.

Thank you for all your comments. Ang and I talk about them with big smiles every day. Also, when you sign your name, put your location as well. It can be either city/state or just MN for example (or country if you're outside the US). It always fascinates us how many people from how far around are praying for Bella. It really moves us to consider this web of prayer coming in over her from all over. Will you add that little piece for us? Thanks!

Good night, and God bless you.