Here we are, back at PCMC, right next door to "our" room, neither Abby or I can believe that they didn't save it for us! Here's a little recap of what's been going on the past week or so........
-Last Tuesday, we got word that Abby's white blood count had dropped even more. We decided to get started on Neupogen injections.
-Thursday, we finally got the injections and she had her first dose.
-Friday, Saturday, and Sunday, Abby hurt like crazy, she said it her way down in her bones, especially her back :(
-Satuday-We went to the lab in St. George to have another blood draw to check her counts and to see if we could figure out what's causing it.
-Saturday and Sunday-Abby starts running a temperature. Not too high, but higher than it should be, right around 100 degrees.
-Monday morning I called and let the transplant team know about her temperature. They still didn't have results back from her tests.
-Monday, as I was leaving school, the transplant team called and told us to head to the pediatricians office for a blood culture, some more labs, and a dose of rocephin (it's used to treat bacterial infections.) Abby was already feeling like she'd had way too many pokes up to this point, then she found out the rocephin came as injections too! and they hurt......a lot. She said it was one of the worst things that she'd had so far, through her entire transplant!
-Monday night-this was the fun part! Even though Abby didn't feel that great, we went to Red Robin because that was the night the proceeds were going towards Abby's wish. Thank you Desert Hills Middle School National Junior Honor Society! There was a huge turnout and we loved seeing so many friends there. We heard the walk-a-thon was alos a huge success!
- Tuesday morning-Abby woke up feeling better than she had in a long time, her fever was gone! I thought she was better, and I was trying to talk her into going to school.
-Tuesday morning-Right after I finished teaching 1st period, and was on my prep period, I got a call from the tranplant team telling us that they had received Abby's labs and that she had a viral infection called CMV. When healthy people get this virus, they usually show very few symptoms, but it's a much bigger deal for someone that is immunosuppressed. I think that Abby has had this for over month, but the symptoms got worse when she went off one of her meds called Valcyte, that prevents this virus. Abby has never done very well with going off meds, she always has problems when we try to take her off of them. They said they wanted to admit Abby to PCMC to give her IV meds that should help her. They wanted us to be here by 3:00, so I rushed out of school, called Britt and Brock and told them to meet us at home (they were right in between classes, so that worked out well!) and I headed home. I called Abby and told her to pack up for a week or two. I got home and packed, I had about 15 minutes, which is 15 minutes more than last time we were going to be admitted to PCMC on May 18th, explained to Britt and Brock what was going on, said our goodbyes (which I always hate to do!!) and we jumped in the car and started driving. We made it, we pulled in the parking lot, right at 3:00!
Tuesday afternoon and night-When we got settled in our room, they came to start an IV-2 more pokes for Abby, the poor thing! Then Dr. E. came up and checked out Abby and told us a little bit about what was going on and that they were going to put a pic line in later because the IV med is pretty intense, it would ruin a regular IV. Abby ordered from room service and we actually got to hang out and breathe for a few minutes, then the crappy part started-they came in to put in her picc line. We decided to go in her arm that they had used before so she didn't have to have another scar, we also decided not to sedate her because she had just eaten dinner, they were just going to use a local anesthetic instead. They started the procedure, which is very painful, got about 3/4 of the way in, and her vein started spasming and it became blocked, so they had to pull it out and start over again. The second time, the same thing happened! By now, Abby was a mess and really didn't even want them to try anymore, she wanted to wait until the next morning. But, being the mean mom that I am, I told them just to do it so she wouldn't have to worry about it anymore. Thank goodness they got it placed in her other arm and we started administering the antiviral medication. The rest of the night was pretty peaceful, although we were both so wound up we didn't sleep much!
Wednesday-Right now, everything is going okay. The day has been filled with ups and downs. Abby's white blood count is dropping again, so they're thinking we might have to go back to doing some neupogen injections again later this week. Her antibodies are also down, so they started an IVIG infusion to help boost those. She feels okay, until she tries to eat, then she feels sick. She really isn't keeping anything in her, it just comes right back out. We will definitely be here for one week, but it will probably be more depending on how she reacts to these medications.
We've spent time talking to all of our favorite nurse friends (We love them all!), having a visit with Dr. Kaza (Abby's transplant surgeon), having visits from friends, meeting with doctors (she even went to an opthamologist because this virus can efffect her eyes too), and playing games. It's been quite relaxing really, I don't think Abby minds being here at all. I'm good here for about 5 days, then I start going a little crazy!!!! We have so many memories here, both good and bad, that it makes it kind of hard to be here sometimes, but I will admit that it actually feels very comfortable here now.that just shows how much time we've spent here the this past year.
Brittany and Brock had to stay home because they have school they need to go to, they also both have dates to prom on Saturday night. It makes me sad that I'll be missing it, it's Britt's last formal high school dance, and Brocks first one, even his first time wearing a tux. I won't be able to get pictures, and they better not plan a big party at the Doman house after the dance!! I'm trying to find them a ride up here on Sunday morning so that they can spend a few days with us. Brock also has an appointment with a sports medicine doctor here in Salt Lake on Monday to check out his messed up ankle. I scheduled it Monday because we were supposed to be coming here for clinic Monday too. If he ends up needing surgery on it, it might just be my final straw, I might lose it completely!! We're hoping it will be something easy, maybe a little physical therapy or something.
Thanks everyone for calling, texting, and checking in with us, we can feel your love and support. Also, thanks for taking care of Britt and Brock, they let me know they already have had offers for rides and dinners and whatever else we might need. I know we have a lot of places we can turn if we need help, and that's very reassuring. I'm hoping Abby is feeling good and is ready to go home next Tuesday. I take complete blame for us being here this time. Last week, I was feeling so overwhelmed with everything-working, taking care of Abby's needs,worrying all the time, making sure Britt and Brock were also getting what they needed, etc.etc, that I was just wishing for some kind of a break, and look what happened..... I guess in a way, I get my break.