Rough, rough, day today. So many doctors, so many procedures, so many tests, so many needles, just very tiring for Abby. I took good notes today, so you could get an idea of what Abby is going through.
-poking for blood from the IV team
-vitals signs check from the nurse team
-Check up from the resident pediatrician-checking on source of fever
-Rehab team-3 doctors working with her memory and mental capacity, giving her mental tests
-Visit from the head of pediatric nurse unit-wanted to hear how she's been treated and hear her story
-Major doctor visit-about 8 doctors ranging from the cardiology team to the transplant team. They pushed and poked and listened and discussed things about Abby for about 1 hour
-Life skills counselor-talk to Abby about how she's doing emotionally
-Rehab team, memory specialist-tested Abby on immediate and short-term memory
-vitals signs check from the nurse team
-transplant team visit, talk about status and look and defibrillator
-social worker visit
-another IV team-more blood needed
-Nose swab-to look for a certain virus
-Visit from friends from school! YES, she needed this in a bad way
-another life skills counselors-talk about what a transplant is
-Back on IV
-dental check-still trying to find out cause of fever
-vitals signs check
-room change due to possible virus
-Birthday party with cousins and aunts and uncles and gmas and gpas and bro and sis
Sounds rough, I know, it was. Abby didn't falter though, she stayed strong through the whole day. I even finally asked her if she'd had enough today, and she just said, "I'm okay, no big deal!" WOW!!! She does say she is sick of giving blook and being poked, and I don't blame her. She has bruises up and down her arms and hands. Her blood was clotting today, they were squeezing her little hand so hard and the blood was as thick as mud!! She also had to spend the day sucking on a little machine (I think it might be called an incentive spyrometer, or that's what it sounded like the doctor said anyway) 10 times/hour to loosen up her lungs and get some fluid out, she might have a little pneumonia too. This helps her to expand her lungs, they still haven't expanded yet. We also discovered today that yes, she did have mono about 4 months ago, there's still traces of that virus in her. You'd think she'd be acting sick through all of this, but she acts fine, it's weird. I felt like today was a real bummer day. It seemed like every time someone came to talk to us, they told us bad news. One good piece of news is that her memory is coming back and she's passing all of the rehab team tests! She even said once today that she remembered falling in pe, but she didn't want to say more about that. I'm glad that have people here to talk her through things because I have no idea what to say, how can I know what to say to her when I don't even know how to explain it to myself?
I have so many things I want to say on this blog, and they're all in my head, but when I go to type them, I forget what I wanted to say! This is probably what an AlZheimer's patient feels like. I did make a decision on where we are going to be living for a while. We're going to try to find a little place as close to Primary Children's as possible. We're going to be spending a lot of time here in the next little while, and we need to be close. I had so many offers from friends and family, I love that you offered to let us stay with you, but I think this might be better for us right now. When we get to leave the hospital, I expect lots of people to come stay with me, because that was the only drawback of not staying with other people, we will just be alone. I think that Brittany and Brock will just be traveling back and forth for a while. This is going to be hard on us, we are such a close family, but I can't think of any other way. I am going to need all of my St. George support to become our family and take care of my kids for me when I'm here, and they're there. Especially when they have to go back to school. Luckily, my parents and my sister and bro live there and can help with that too. I'm still trying not to look to far ahead......that's too hard, we'll just take baby steps right now. Now I just have to find a place we can live, I think this will just fall into place like everything else has.
It was so nice today for Abby to get to visit with some of her friends from school. Ellie Larkin and Hadley Cowin drove all the way here (with their moms and brothers and sisters of course) to visit with Abby. She loved it, especially just being able to have normal conversation that didn't involve anything medical. I can't believe they drove here and back in one day just to see Abby! you are amazing. It was great for Brock to see his friends too, he REALLY needed that! I was also so glad to see my sister Meri here today too. It will be nice to have her around for a couple of days, we need people. Britt and Brock will be in St. George for the next few days. The saddest thing I saw yesterday was when they had to say goodbye to Abby when they were leaving, it makes me cry just thinking about it. But they will be back soon! Please help them while they are there! Britt will be having her surgery tomorrow, my dad will be with her. Just text them and ask them what they need, they're like me and will say that everything is fine and that they don't need anything, but they do. They need to know that they will be taken care of when they are in St. George. I need to know that too. That is one of my biggest worries now. Please help me take care of my awesome kids!!!
I hope today is better. I went to bed feeling pretty mad at everyone and everything. Making us move rooms last night was the breaking point. I was so frustrated because I spent a lot of time in the morning organizing our room (this is one thing I can do right now) and then we had to move it all, it's because of Abby's possible virus. If you saw how much stuff we had in that tiny room, you'd completely understand. We've also tried so hard to make it cute for Abby and we had to start all over again. We also will probably being moving back in a few days, so we'll have to start all over again. Well, that covers most of May 23rd, not one of our better days, probably one of my worst, although, they've all been my worst. May 24th, Abby's birthday, just better be one of our best!