So it seems once again that the title of this blog is more than appropriate. We are always medically managing Brigitte to help her...to maintain her quality of life. Last night, we were truly Saving Brigitte.
On Tuesday night, Brigitte began getting sick at the football field. As I stood with friends, I said "Here we go, she's going to end up with a pneumonia." Little did I know that 24 hours later, Brigitte would literally be on her deathbed. She was dying and I didn't know it. I hadn't spent the night before hugging and kissing her. Hadn't spent the afternoon loving on her or sitting on the carpet playing baby dolls. Instead, I was so thankful when the bus had come to pick her up because I was going to get some quiet. I let her walk around the football field talking up everyone who would listen to her. All while talking with friends, I couldn't wait to get home and get all the kids to bed so I could rest. That was until 6pm and she walked to me vomitting. Not a terribly unusual happening, but I knew I was in for a long night.
I took her home, got her settled. Friends were good enough to bring Jake home later. Brigitte began to wretch and vomit more and more. She was up all night. I was buying time to get the kids on the bus and get her to the pediatrician. I decided to keep Sean home so as not to get a call from the school saying he had a headache while I was trying to deal with Brigge drama. So the bus came, we hopped in the car. I stopped at the gas station realizing Sean hadn't had breakfast...so I grabbed him a box of Wheat Thins and myself a Vitamin Water....meanwhile, Brigitte was tanking in the car.
Upon arrival at the pediatricians office we endured the nasty looks of those in the waiting room as my daughter's tounge was literally hanging out of her mouth while she wretched. The doctor immediately saw us....and immediately called for an ambulance. We were headed to Boston. The EMT's arrived and refused to transport her. We had to then wait again for a paramedic to come and off we went. Thankfully we were able to secure a direct admit and bypassed the ED all together. She got to the floor and was the sickest I had ever seen her. Her BP was dropping, as were her vitals. When Brigitte crashes, she crashes hard and she crashes fast. She had an XRAY which was alarming, and then a subsequent CT Scan which was worse. Within the hour she was prepped and headed in to the operating room.
The surgeon said "Pray for a miracle. She is a sick little girl, and things don't look good." She was showing signs of a necrotic bowel. We were told to expect her to lose most of her bowel along with some of her liver. They even talked about putting her on the transplant list if she met the criteria after surgery. We were told to pray....and so we did.
About 4 hours later we were told that she had a complete small bowel obstruction due to adhesions from a previous surgery. Her bowel was gray and dying......but after removing the blockage, they did see signs of blood returning and the bowel had started to pinken up. This was good news. This was our miracle.
She was transferred to ICU following surgery. She currently has a central line, 2 peripheral IV's, an Arterial line, Foley Catheter for urine, Gtube for drainage, a naso-gastric tube for even more drainage, and an epidural for pain. She has barely been awake since Tuesday night. She has a large bruise on her bowel that has the potential to further damage her organs. We won't know if it has caused a further blockage requiring removal of some of the bowel until she can begin getting fed again.....which could be up to a week away. She's alive, but very sick.
So here we are again planning for another long admission. This having been the scariest yet. We once again have to change the entire house around to accomodate her when she comes home. She will need to be kept away from as much illness, bacteria, etc. Its proving to be our biggest challenge yet.
Adding to this is that poor Sean is still recovering from major brain surgery less than two weeks ago.
I want to sit here and complain. But I can't. The nurse just walked in and said "The pain service will be in shortly, they got held up in the end of life room." Yes, such a place exists in our reality. So while I know that I have much to be unhappy about. I have so much more to be grateful for. We're going to get through this.
Brigitte is alive. Its all that matters.