So much has happened since I last posted ... more than I ever wanted or expected to happen.
"Critical" was the condition she was in last week as we found ourselves in the ICU for three days.
Early Tuesday morning, La Petite Belle woke up vomiting. She had been vomiting for a few days, but it seemed different than before. She was having more nausea. The vomiting that occurred that morning and that would continue over the next day became more bloody and in high volumes. It's sad that I now can differentiate between fresh-blood vomit and old-blood vomit. But, it's something I've had to learn, along with so many other countless things I never wanted to even know about.
That morning, as I was helping La Petite Belle back from the bathroom to the bed, she collapsed on the floor. Most of the nursing staff rushed in to help get her to the bed. She was unable to put any weight on her feet or use her legs at all.
As she fell to the ground, she said, "I just have to lay here for a little while." There was no getting her up without help. As the nursing staff was helping, she became incoherent. One nurse was calling her name over and over and saying, "Are you still with us?"
This was, by far, the scariest moment yet until another one that would soon follow.
The nurses did get her back in bed after about 30 minutes. Turns out she had lost way too much blood. Her hemoglobin was the lowest it's ever been ... dangerously low. Her platelets were equally low. The string of transfusions began.
The GI doctors and surgery doctors were called to consult and she was scheduled for another scope the next day. The vomiting and blood loss continued throughout the night and she ended up getting the procedure done earlier in the morning. Our doctor was extremely anxious to get us down to the OR.
We sat in the waiting room. We waited. And, waited.
Some of my very best friends actually had driven up for the day, unbeknown to them that this was a day I was really going to need them. They sat with us.
Over two hours later, the doctor came out and took us into a private room. During this time, he proceeded to tell us that at the base of her stomach, near her small intestines, she was simply oozing blood. There was no certain vessel or anything that could be cauterized or taken care of. No quick fix. She basically had a large bleeding ulcer at the top of her small intestines.
The doctor said she was in critical condition and that she would need to be monitored in the ICU. They had to give her 12 units of platelets and 4 units of blood just in the two hours she was in the operating room. They called even more doctors into the OR as she was on the table to consult. She needed to get stabilized and they needed to try to stop the bleeding with medications. Overnight they would monitor her and be able to give her blood more quickly if she needed it. They also had placed an NG tube in her stomach to suction out all the blood so that they could measure how much was coming out. If the volume of blood was large and they couldn't get her bleeding under control, they would have to go in the next day to scope her lower than they were able to. Depending on what they saw then would determine if, as the doctor said, they would need to "open her up."
I'm sorry. What? "Open her up?"
This is not something you want to here as a possibility for your child who is having trouble stopping bleeding.
The next 24 hours would tell us which way this would go.
I have figured out on this roller coaster ride that being scared is a very real thing.
And, that being scared happens even when you trust God. It's part of being human. I don't beat myself up over that stuff anymore. There are moments when I'm definitely scared. And, there are moments when I definitely rest in God's arms.
Our time in the ICU was LONG. It was emotional. It was certainly uncomfortable as there are no couches in the rooms. Sleep was limited during this time. We were all exhausted. We lost our room on the BMT floor and had to move all our things out. Thank God for our friends who were here exactly when we needed them. They prayed with us, held our hands, hugged us, and moved all our stuff. Coincidence they were here on this day? I think not.
After the second night in the ICU, seeing countless containers of blood being pumped out of her stomach, something immediately changed. I know that it was God moving on our girl's behalf and in her body. Within just a short couple of hours, the container of blood was no more and the only thing coming out was normal stomach stuff ... bile and normal water/secretions. They continued to monitor it.
La Petite Belle hated not being able to shower or bathe. Like a good daddy, Beau washed and conditioned her hair using a basin. It helped her feel so much better.
By late that afternoon, a room became available back on the BMT floor and we were outta there. I'd never thought I'd see the day La Petite Belle was crying to go back to the 8th floor. It's what she knows. It's where she's comfortable. Everyone knows her there. She even gave the doctors a hug and cried about being able to finally go back up.
This was our second "serious" or "critical" moment. We had an earlier one before this, involving her kidneys and the words "kidney failure" and "renal failure" were also used.
This is very bumpy road that we're on. Just when she's improving in one area, she seems to experience setbacks. But, no more. I've had enough of this. This particular setback was caused by the treatment (steroids) for the GVHD.
There are so many other things going on that just would be too much information to post, but just know that this thing she's fighting is a beast. Not only physically, but mentally and spiritually. As I've told her from the time she was a little girl ... the enemy would fight against her. He would like nothing better than to see her dead. He ALWAYS comes to STEAL, KILL, and DESTROY. La Petite Belle has always been a force to be reckoned with and we've known from the beginning that she had a great call on her life. It's never been more evident than now.
We definitely have felt all of your prayers and love. Thank you for your support, messages, and comments.
We continue to believe God for La Petite Belle's TOTAL, COMPLETE healing. And, no more setbacks. We pray only for her to move forward toward a full recovery.
Another sweet friend sent a box of goodies to me and this Scripture (Psalm 91:4) was stamped on everything:
It's truly where I find myself most of the time ...
Simply hiding under His wings.
Although I don't understand most things about what we're going through, I still know He hides me. He holds me. It's the only place we can feel safe when life is hard and we have no answers. Even when we don't where He's leading us or what He's doing, He still hides us. We can still hold onto Him for dear life. With everything that's within me, that's where I am. Not knowing. Not thinking. Just holding. Just hiding.
If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg. All funds go to cover medical bills and expenses.