I can confidently say that this is THE BEST I have felt in months (although, still trying not to ride the roller coaster 🙂 ). Let me tell you how we got here.
Bea’s muscle layer was closed last Monday and that day and Tuesday were, by far, the worst days of this whole experience. They couldn’t get her pain under control and seeing your child crying out in excruciating pain for HOURS is torture. Complete torture. And I was still a patient at that point so I only saw it for a little…Jordan lived in her room and was up with her all night until they were able to calm her down. Just horrible.
After that, she’s been ticking up, up, up. Today, they even said they are discharging her WEDNESDAY. Like tomorrow. Although her incision looks really scary (be aware of photo below), she is feeling great. She is all smiles, laughter, and just LOVE for her mom and dad. She is kicking, trying to roll over, and is just being so freaking CUTE and happy I can’t even stand it! I am in HEAVEN when I am with her. Absolute heaven. There is NO better feeling than seeing her as a smile-y, normal, little non-yellowy (see below picture that was taken right before her transplant) baby. I thankful, blessed, and just happy to be where we are in her recovery.
As for me, I had a little bit of a meltdown last week. I was trying to do too much (shocker) and was trying to be tough and not take my pain meds (shocker) and it basically caught up with me. I still can’t drive and can’t pick her up, but that will change in a couple of weeks. I am so lucky that my mom and mother-in-law have split days to sit with Bea at the hospital and I pop in for a couple of hours in the morning and at night to sit with her. Jordan has been BEYOND pulling his weight and is going from the hospital to work, back to the hospital to spend the night with her, and then back to work again. I will be so thankful for Wednesday when we can all sleep under the same roof.
When we transition home, we have A LOT to keep track of. We have nurse visits 2x/week and then have to go to a doc appointment 2x/week. When we are home, we have to keep track of and administer 10 medications, take her temp 1x/day, take her blood pressure 2x/day, and flush her central line (which is stitched into her chest) 1x/day.
All in all – it is A LOT but I am BEYOND thankful for how well Bea is doing and for the incredible care we have received at Cincinnati Children’s Hospital. We are truly blessed!