Five Minute Friday – We are Different
Today was a long day. It was a day spent doing something that is different from what most families were doing today. Last night, right after my last final of the Fall semester 2017, I came home, threw some clothes in a bag and drove two hours to my sister’s house. We then transferred our overnight bags to her car and she drove us three more hours to Palo Alto CA. We arrived around 9 p.m. at the hotel down the street from the hospital my daughter has been a regular “guest” of since the ripe age of 2 months old. This morning, we got up at 6:30 a.m. to get to her 7:45 a.m. appointment in their Heart Clinic.
My daughter first got vitals taken. We then waited a bit longer in the waiting room and got called back for her echocardiogram. Once that was done, we once again sat in the waiting room for a bit before we got called back to a clinic room for the nurse and doctor visit. Our nurse that we’ve seen since she first arrived at the hospital came and we chatted while she observed our daughter and listened to her heart, etc. She told us she wasn’t supposed to work today, but when she saw that my daughter was on the schedule, she switched her days. She has been our guardian angel at the hospital. My daughter loves her. It was nice to hear she also loves our daughter. The electrophysiologist then came in to check on her pacemaker. That took a while. Turns out her pacemaker was not connecting well with the lower ventricle and it was causing it to pace all the time. So, she had to do some serious adjustments on it and it took a while. While she was doing that, the doctor came in. This doctor has also been with us ever since my daughter got her transplant. He is what my husband calls “overly cautious,” which isn’t always a bad thing when you’re dealing with heart transplants. But, he hasn’t been on our rotation for years and he immediately called for her to get an ultrasound on her liver and start getting an annual MRI on both the liver and the heart because of a leaky valve she has. This is all new stuff and when she heard MRI, she immediately burst into tears because she had a bad experience at her last MRI two years ago. We finally got her calmed down and understanding that the MRI was not going to happen any time soon. The electrophysiologist finished up and we headed over to the new hospital (just finished in October) to get blood draws and check on getting the ultrasound. The blood draw took a little bit and the ultrasound could not be done because you have to be 8 hours without food. So, we headed back to the heart clinic and my daughter got her Zio Patch put on her chest for heart monitoring over the next week to two weeks. Another thing she hasn’t had done since she got her pacemaker a year and a half ago, but the doctor is thorough. After all of that, we hopped back in my sister’s car and drove three hours back to her house, transferred everything into our car and drove the two hours back to our house.
My house is a disaster because…well, finals. And six pets. And…well, life. And that is probably the same as most people at this point leading up to Christmas. But, most did not have a long medical appointment at which their daughter’s heart and liver were discussed as if they were parts in a car – “we’d like to avoid having to do anything to that valve until she’s reached her full growth.” Most did not have to travel some 10-12 hours in two days to get that appointment and back home again. Most do not have to plan on spending their Spring Break in a hospital getting a heart cath done. Most did not have to sort out their six or seven medicines into their daily medicine dispensers when they got home. Most do not have to worry about blood draws and prograf levels and pacemaker reports and heart monitors. We are different from most. But, we are the same as we’ve always been. So, sometimes I forget how different we are. But some days, the difference is too much to forget. Tomorrow will not be so different. Just medicine in the morning and evening for the most part. Showering instead of bathing until the heart monitor comes off. But, not that different. And most of our days will be those days. Not so different.
But, some of our days will be vastly different. And all of my days are spent with an ache in the back of my mind that hopes this is as different as we get. That we will all grow old and my husband and I will die first and we will not spend months or years in a hospital or worse. That is the big difference. The one difference that I don’t like to think about or talk about or even recognize as being there. I’m sure it makes me different. I’m sure it makes my daughter different. But, that difference is not one we can be rid of. We can only deal with it. And deal with it we will.