I did have to take a little break for a while. Hospital life isn't easy and her attitude didn't help. I reached my breaking point today and had to walk it off. I also may or may not have asked the nurse if there were any bottles of wine stashed in the supply room! 😳. Luckily, a great volunteer came to do a craft with Abby and gave me an hour off! Her timing couldn't have been better! (I'm wondering if the nurse called her, figuring maybe this was the next best thing to wine!) 🍷
One great point of the day was getting to skype with her class one last time. She was able to say goodbye, sing some of the favorite class songs, and give lots of "I love you" signs!! She was thrilled to see everyone, but it also made her really sad. Abby loves school and was so disappointed that she couldn't be there for the last day. She definitely shed some tears today. She is sad to say goodbye to her teachers, but has told many people here that she's glad her helper Mrs. D will go with her to first grade because, "She'll stay with me as long as I need her!" 💓. Abby absolutely adores her and so do we!!
Another heartbreaking issue that has come up is that Abby feels like the need for bipap is a result of her not trying hard enough. When we put her on because of her breathing, she pleads with me that she will try harder. 😭. As much as I have tried to explain that it's nothing she does or doesn't do and that her body just needs a little extra help right now, she's been really down about it. We had Child Life come in to talk to her too, but it's still rough. We have had to hold her down to put her mask on during the day. 😔
Our pulmonologist at home has been in contact with me quite a bit and is concerned about Abby's decline....as are we! She has known her since birth and has seen her progress and relative lung health, so this is very different for Abby. Our pulm is not sure that Abby is ready to go home and would like to talk to the pulmonologist here to discuss the plan of care. I haven't heard the result of that phone call, but I'm really hoping we will hear tomorrow. I fully trust our pulmonologist and we will do anything we can to get Abby better.
Things are tough right now. I obviously don't want this for my daughter--having to be watched constantly for signs of respiratory distress, being tied down to a bipap machine multiple times a day...Abby is too spirited for that. But today, even after a 2 hour lung break on the bipap, she only lasted an hour before needing to be put back on it again. She got winded and couldn't catch her breath just walking halfway around the unit this evening. We just want to know why this is happening, and we want her to get better. She's not the same girl she was when she came into the hospital, and that breaks my heart.
We would appreciate your prayers for Abby's emotional and physical wellbeing, and for our stress as a family. We are thrilled to have the boys here this weekend and I'm looking forward to spending some time with Caleb. This has been tough on him too. It was good to be a family tonight. 💜