I never really liked that song that much anyways. I have always prided myself on not being a big worrier. I was able to let things go pretty easily and I didn't waste a lot of energy worrying about things outside my control. But, I will always have an undercurrent of worry about my life now. An immunosuppressed child is nothing but worry. I worry about people touching her (we have little signs on her stroller and car seat that I ordered at My Tiny Hands, but obviously people don't always see it, or we are carrying her, etc. It is especially bad at this time of year, with the flu and colds and such floating around everywhere. I also worry about her being in enclosed places - we were warned on release from the hospital not to go to malls, grocery stores, etc. with her. Some of that is held over for flu season as well. But, now my husband and I worry about everywhere we go - are there too many people? Is the airflow poor? The funny thing is, I know there are transplant kids who have to fly places at this point post-transplant and that seems like the worse possible thing to avoid germs, so I'm sure us taking her into a small restaurant is not such a big deal.
But, the worry is there. I am friends with some other transplant moms online and two of them have ended up back in the hospital this week due to fevers/cold symptoms/low white cell counts. Luckily, one of them is already out again after a blast of some IV antibiotics. I'm hoping the other gets out just as quickly. But, I sit at home, thinking - we could be back in the hospital tomorrow...am I ready? Do I have things at home settled enough that I could leave at the drop of a hat and not come back for a few days. That is what I always much be ready for now. Last time, my husband took her for her regular clinic appointment and ended up staying for two days. So, I think its best for me to always be prepared.
I think I do pretty good with it. She always has a basic diaper bag packed. She has plenty of clean clothes and blankets ready to go. We don't have any plants to water and the dog always goes to my sister's or my mom's house when we go. Right now, the house is pretty picked up (there is nothing worse than spending three days in the hospital and then coming home to a dirty house). Her medicines are all kept in a little plastic tub that can be grabbed on the go quickly. So, yeah, I'm ready to go. I hope I don't have to go...not for an emergency anyways. We do have a biopsy scheduled for January 5 that will require us to leave on the 4th and stay at my sister's or mom's house for a night (to make the morning a little less early than 3 a.m.) and then I have to work in the Bay Area for the next four days after that, so it will be an extended period of time away from home...which requires even more preparation - a pack-n-play, toys, more clothes and blankets, syringes, bottles, formula, food, spoons, etc. Its like traveling with a circus really - and we only have one child! I can't imagine if I had two or three! I don't think I would ever leave the house overnight voluntarily!
Well, Bean is now awake from her nap and crying, so I have to go. But...are you ready to leave at the drop of a hat if an emergency happens? Even if you don't have an immuno-compromised child, its always good to be prepared. The Boys Scouts knew what they were talking about on that one!
This blog is named for my daughter's heart transplant. In July, 2009, "Bean" received a new heart. It is my hope that this blog may help others going through major changes or living with major challenges.
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