Once again, the we’re out message comes later than the we’re back in message! We have been enjoying being out!
We were discharged mid-day on Friday and got to go home. Kate is still sore and very cuddly but in good spirits. We went out to see a friend on Friday and went for a walk outside Saturday (and ended up at a brewery)! Kate enjoyed both a lot. For overnights, we now can use the feeding tube to giver her a “slow drip” feed over the course of several hours. This lets us catch her up to her calorie goal for the day and also lets all of us sleep through the night! Yay!
It’s reassuring that we finally have a way to help Kate get the nutrition she needs without having to try to force a bottle in her mouth every 30 minutes. Previously, it was quite stressful wondering if she will have a large enough feed or not. If not, we would usually stay at home and wait to try to get her to eat a bit more. Now, we are still working our tail off to get her to eat but if she only eats a portion of what she should for a feed, we have the option to side-step the mouth and give her that nutrition. We are trying very hard to make sure we don’t get lazy and use the feeding tube too often but it’s a huge relief to know it’s there.
This past hospitalization was quite different from our previous two. This is the first one where Audrey and I were both extremely concerned for her health. After her surgery, we were struggling to keep her calm enough to keep her pulse under 180 bpm. That’s crazy fast and that was the “calm” pulse for a while. She was pissed that she wasn’t being given anything to drink. If we ran into these symptoms at home, we would be rushing to the Children’s Emergency Room. It was scary. For the 24 hours post-surgery, we don’t think Kate slept at all. Up until 10pm Wednesday, we were planning that Dave or Audrey would have to be holding Kate the entire night to keep her calm. Late Wednesday evening we were able to get her calm enough to lay in bed but at best she was only lightly asleep. Thursday after the NPO (nothing by mouth) order was lifted and she ate something, she was out and asleep…for almost 24 hours straight.
We’re extremely grateful for the staff at Children’s Hospital. They were great. For the most part, we were able to talk to the people we needed to before discharge day. This got us set-up with our plan for moving forward and helped ensure Kate had the support she needed.
If you are ever looking for a charity to support, or a cause to jump behind, I strongly recommend helping out Children’s Hospital. Their Child’s Life department does a good job trying to provide toys and comfort items to the kids stuck in the hospital. For programs, I am going to start promoting transplant awareness. It sucks to think about but I strongly suggest you think about being an organ donor. You have no use for them after you go and you can save lots of lives. If you are interested, make sure your loved ones know your wishes. Kate is relying on someone in this situation. It’s horrible to think about but at the same time, it’s an amazing way to leave a legacy.
Thanks everyone for the support. We really appreciate the thoughts and notes of support. This was a tough hospital time and it helped hearing from everyone!
Audrey, Dave & Kate
Thanks so much for the update. Kate is beautiful and you two are awesome parents. I’m thrilled she’s doing well and I’m keeping all of you in my prayers every day.