We are home. We made it home last night. Dr. Monkeyology has returned to his spot in Grace’s room. He has once again upheld his responsibility of protecting her and serving as her comfort item during a tough time.
When my dad told Graham that we were headed home he insisted it was time for him to come home too. He did agree to wait until today though since it was a little late. He’s also been, in his own words “exhausted.”
Grace did a great job on the way home. We gave her a pretty big dose of pain meds and went for it. She played a little after we got home, not a lot. I’m encouraged by this but still a bit nervous. I’m hoping a night in her own bed with no one interrupting her sleep will do her a world of good.
Our last two days in the hospital weren’t exactly smooth. First, we were running out of seizure meds. Grace needs to take name brand seizure meds. Generics can have a varying amount of medicine in them. The hospital was not able to give name brand medications to her so we were using our home supply. We hadn’t planned on that and didn’t have enough with us to cover the length of a 10-day hospital stay. We actually only had enough to get her through her noon dose yesterday. It didn’t help that we’d been giving her extra meds because of the extra seizures going through what we had faster than we would have normally. I made calls to our pharmacy back here and we had a backup plan if we’d needed to stay. Since we were able to come home our neighbor Julie ended up making a trip to the pharmacy for us. The meds were on the kitchen table when we got home and we didn’t miss a dose. (Thank you, Julie!)
Next, Grace’s blood pressure went up. Not a lot but it ran high. This was true except when she was sleeping and managed to stay asleep while they took it. The nurses were worried about it. The surgeon and his resident were a little worried about it. The hospitalist was a little worried about it but no one had a reason for it. She wasn’t complaining so I didn’t think it was the pain. It could just have been that she was tired of people messing with her. So, we are thinking that now that we are home we may just run her to her doctor here a few times over the next few days and have them check her blood pressure, just so we make sure we aren’t missing something.
Then there was pooping drama. I promise just to share the highlights! We ended up getting an x-ray to see how much poop was in Grace to make sure there was no blockage. Luckily there wasn’t a lot, so we felt comfortable bringing her home. When we were discussing the possibility of the x-ray the surgeon (not ours, the one covering for the weekend) said that he wouldn’t take the x-ray if it were his daughter because she’d need her ovaries some day and he wouldn’t want her to have the extra radiation.
I looked at him. I actually couldn’t believe he’d said that.
He quickly went on to say. “Your daughter will never use hers. Do you want the x-ray? I will do whatever you say.” Yes, I told him. I wanted the x-ray.
We live four plus hours from Minnesota. No one in Des Moines could have done the surgery. Is something goes wrong now that we are home we are going to have to drive back to Minnesota. Many of the staff at the hospital, and the surgeon himself had commented to us during her stay that they see kids from a 5 state area with this procedure. Even though they talked about it, it is like they didn’t realize that it’s a really big deal to be that far away from the doctor who just rearranged your child’s insides and was sending you home with a kid still in pain, with holes and tubes in her that weren’t there before. I needed to know exactly what we were dealing with.
I stuffed the feelings I had about the “your daughter won’t use her ovaries” comment somewhere deep inside me because frankly you can’t deal with that stuff in the hospital. I’ll have to flesh that out now that we are home.
It took us forever to get Grace ready for bed last night. She came home with two catheters in her that we need to take care of for the next three weeks. At the end of the three weeks we will drive her to Minnesota and they both will come out. There is a lot to taking care of them that we haven’t done before. Kevin and I got it figured out. Our combined tired brains were able to get it done. I’m confident we will get better at is as we go. What choice do we have?
For those of you that pray, we need those tubes to stay right where they are for the next three weeks and we’d appreciate your prayers.
Starting as early as Sunday nurses started coming into the room at the end of their shift and saying “It has been a pleasure to know you, but I hope to never see you again.” They don’t want Grace to have to be in the hospital again. They don’t want her to have to undergo something this major again. Neither do I. But the reality is I don’t know what the future holds with Grace. We are making it up as we going along. Following her lead.