Thursday, June 2, 2011

June 1st-Discharged from Primary Children's Hospital

I'm sitting here on a soft couch, looking out my front windows, in our new, temporary home.....Much better than that stuffy hospital room. Abby just keeps saying, "Home is where the loooove is!" with this funny, little grin on her face. The docs decided that even though Abby's INR levels were too high, they would let us leave anyway, I think they were starting to worry about me and my state of mind, they probably knew I was going to lose it very soon if we had to stay. We have to go back up their this morning and have her tested again. They are also going to do a couple of tests that have to do with the transplant, just making sure what heart she can accept. We might have to go back again tomorrow too, but probably not until Monday. But that's okay, I will go up every day as long as I don't have to sleep on the hard couch for a while!

Once they decided we were going to be able to leave, things got crazy. I had to:

- arrange for her hospital bed and oxygen to be delivered to our house (Thanks dad for just hanging around at our house all day waiting for them and the cable guy to show up!) They were still there at 3:30 when we got home, it's a good thing because he had to go through all of the equipment with me. For some reason, everytime I talk to these people, this whole situation becomes so real to me, It kind of makes me feel sick. Especially when I'm learning about how to give Abby the oxygen, this scares me a little bit. They put a machine called a concentrator in our house. It produces oxygen for Abby. They connect a 50 foot tubing to it, so Abby can get around the house without changing tanks. It's loud, but I think we'll get used to it. They also delivered about 15 oxygen tanks of different sizes for us to use. Twice a month they will come and switch out the tanks. The guy kept asking me how many tanks I needed, I wanted to say, "Listen buddy, how am I supposed know, this is all new to me, don't ask me stupid questions like that!" But, I didn't, I just shrugged my shoulders and tried to be polite about it. Abby's hospital bed fit perfectly in her new room, plus there's another bed in there too (which is where I'll probably end up sleeping). Thanks Whit for buying those cute comforters for both of the beds and being here making her room look cute, and stocking our cupboards too! (no Britt and Abby, not "stalking" but "stocking")! It made a huge difference for Abby. All of the equipment is in, and I'm somewhat educated in using it!
-pick up all of Abby's meds at the pharmacy in the hospital. Two things to say about this: It's a good thing I'm insured, and this was weird because we're a family that hardly ever takes any medicine, ever, and I left the pharmacy with a huge back with lots and lots of instructions. I think I should program my phone to alert me of when to give her each med until I get a hang of this, I don't want to mess up.
-Go over our discharge papers. You think this would be easy and fast, nope, it wasn't. We had a thick packet of papers that had instructions for everything, plus notes about everything that has happened so far. They had highlighted many sections of things that were important-which was most of the packet. I've gotten really good at pretending I'm listening, and just storing the info in the back of my brain until I have a chance to process it all.
-Another 30 minute lesson on Coumadin. I guess they've learned my information overload coping strategy, and they know they have to keep telling me things.
-Clean out the room and get all of our crap out of there. This was harder than you think because we had so many signs and books and just things. But now it's all moved into our house, not all put away yet, but almost. I'm learning that it's so much easier to live without a lot of things. We've learned to really simplify. I look at all the stuff we used to think we needed, and we've gone the past 2 weeks without any of it, and we haven't even noticed. Hopefully this will be a lesson I'll remember when we're back in St. George.
- Say goodbye to all of I've the doctors and nurses that I've become friends with. Britt always makes fun of me for this, because I like to talk to and make friends with everyone. I know we'll be back there soon, but some of those doctors I've seen almost every day for the past two weeks. We've had not only medical discussions, but personal discussions too. It's amazing to me the relationships that you can develop when you're going through a tragedy. I've learned that that's when you truly get to know the people in your life, you can see their true intentions, and their true self. Anyway, there were lots of hugs going around, I know that many of the people at PCMC truly care about Abby and the Domans and that we'll be well taken care of when we end up back there. I will really miss some of my new friends. Britt and Abby wanted to go back last night and say goodbye to their favorite nurses that weren't working when we left. I know a bunch of them stopped by our room looking for us yesterday and were both happy and sad that we weren't there. I wish I would've taken pictures with them, but we'll have another chance.

Now we just get to sit back and relax a little bit and try to enjoy this next step. I've never had a time in my life when I wasn't working or busy. We usually just run from one activity to another.... all the time. It's strange to just have to think about taking care of Abby. I'm going to try to think of this time as a much-needed break from my crazy, busy, working, single-mom, life. Correct me if I'm wrong, but I think I might deserve it. We obviously still have lots and lots of worries and stress, but it's different. I'm going to try to make the most of this time. I want to read, play games, hang out with friends, scrapbook (well maybe, I'm not sure why I threw this in, maybe it's what I should be doing, but it might be too late for this since I haven't started yet), learn to play the guitar (always a dream of mine), and spend as much time with Abby, Britt, and Brock as possible. I know that the past 2 weeks have changed my priorities in many ways, things that I used to think were important aren't anymore. I think that this was a much-needed change for our family. I miss Brock but I know how much he loves football and I'm glad he's there with his friends. Remember if you see him to give him a big hug, he probably needs it. I know that things are slowing down a little bit now, but keep in touch, we still need it. I'm still amazed with all of the things that I hear are going on in our behalf. Thank you for all of it!!!!! We think and talk about how many people are helping us, thinking about us, and praying for us, every day and how lucky we are. Thank you.


  1. You are amazing! Everyday I read your blog and can't believe your strength. Will you post and address to your new place or email it to me, ~Amy Read

  2. I am glad you are in your home and can feel more human in a house. Your nurses were amazing though even through the short time I was there I was impressed with the quality of nurses and care givers. I am happy for Britt and Brock that they can feel like there is a home for you all together now.

  3. Michelle,

    You are such an inspiration to me. You are such a strong family. I think you were correct about what you said, to your friend that you would touch a lot of different peoples lives. and i am one of those. EVERY morning the FIRST think i do is go straight to my phone, or to the computer to read your post. They have touched my life and has made me more humble. I was a 7th grader this past year and i knew u and abby, you both were just so amazing! and you still are, you are not letting anything happen.
    I love you and your family! God bless you. you are in our prayers.