So in my last post, I alluded to the fact that things hadn't been great for Brigitte for a while. Sadly, they haven't gotten any better.
I went to Florida with Brenna for her National Cheerleading Competition back in March. We had a wonderful time together and I was finally starting to feel a little normalcy. It was wonderful to be away and I couldn't help but think about how great the summer was going to be. We arrived back home from Orlando on a Monday night at 10:45.....Brigitte hadn't been doing all that well on Monday, and she was admitted to Children's on Tuesday morning at 9:00 am. I didn't even get 12 hours at home.
We spent the next 10 days inpatient, where she underwent 3 different surgeries. During one of them, her blood pressure dipped dangerously low and she needed a very strong medication to avoid a code. The last was to remove the port she had in place because it was infected. She has been without central access since then....and it has been a downhill slide since then.
We knew that this was a big concern and I have to be honest and tell you that nobody on her team was comfortable with the decision that Bryan and I made to take her home without a line. But, we needed to put all of the "can she do it" wondering to rest and give her the opportunity. So for the last month, we have struggled and struggled with trying to feed her and keep her hydrated. From a health standpoint, we have also battled a pneumonia as well which hasn't helped things. From a nutrition standpoint, it is hard to ever recover from illness when you are are not optimizing nutrition and hydration. Brigitte is now below the 30lb mark....she will be 5 in August. Her size 2T pants are falling off of her. I feel like I am going to crush every little bone in her body when I hug her. It is so sad.
Thankfully, she has had a good week at school. It is the only place she is happy. It is the only place where everyone just leaves her alone and lets her be a little girl.
Her behavior has been absolutely horrendous. She is hitting herself, throwing temper tantrums, and slamming her head against the floor. We are attributing this to the fact that dehydration makes you feel just plain crummy and she can't express herself and this is how she reacts. It is awful to watch. My heart truly, truly aches to watch her like this. Add to this that food in her belly really just makes her sick, she is gagging and retching with quite a few of her daytime boluses and we spend every morning holding her hair back with a towel in front of her face waiting for her to say "I all done" while she vomits from the intolerance to the overnight feeds.
This is no way for a little girl who is typically so happy to live. None. Its not fair.
So, next Thursday her surgeon will again use up another precious access spot (you only have so many in your body) and place a central line. She will resume TPN and hydration immediately following the surgery. I honestly don't know where we go from here. I don't know what her future holds.....so please, don't ask me. I just wanted to keep you all up to date and again ask for prayers for Brigitte. Thank you so much for always thinking of us. It means so much to us. It really does.