Amy Sampsel: “Bad week. Really BAD week. And the week before this one. Was even worse.
On Monday, December 7th, Hailey’s head pain was absolutely horrible. So, she received 10 nerve blocks in her head, which brought the pain from 8 to 6. Unfortunately, that only lasted for one hour. She tried going to school and after 45 minutes of pain and dizziness, she wanted to come home.

On Tuesday, December 8th,  her head pain, body pain and dizziness was still an 8 out of 10. She received an IV with Toradol. Her pain then went to 7. She came home and went to bed.

On Wednesday, December 9th,  she woke up still and her pain was at a 7. She tried to go to school again. She only made it 45 minutes and had to come home.
On Thursday, December 10th,  her pain was still a 7 but she really wanted to make it to school. On way to school, she was trying to do “positive self-talk.” I heard her say, “I’m going to stay at school for my whole class today.” “Hailey you can do this.”

She only made it 30 minutes before she had to struggle down hall with horrible dizziness. When I picked her up, she was a 9 and she immediately started crying from the pain. She was so frustrated with herself, as she desperately wants to be able to go to school. She continued to cry for several hours in so much pain. She was so frustrated with her life.

On Friday, December 11th,  we went to the Neuro Science building to have some tests done that couldn’t be done at the Children’s Hospital. She was suppose to have sedation for these procedures but asked if she could have me there instead. The wonderful doctor agreed. He also said if at any point she needed it, then they would give it to her. They took her to OR and I put on shrubs, mask, hat and metal apron. I got to sit at head of bed and at times and was able to hold her hand. The sweet doctor kept the lights turned down and we kept a cold wet wash cloth on her head.

Hailey had a spinal tap first and then a myelogram. They checked her fluid pressures and to see if she had a leak somewhere. Results were all normal. She then rolled onto her back and they performed a venogram to check different pressure #’s throughout her brain. The wire for this would sometimes cause severe pain depending on where it was. As they were doing the procedures, the doctors warned her that something was going to really hurt. She wouldn’t even flinch. I asked her if it hurt and she would repeat, “The nerve blocks hurt much worse.”

The team in the OR commented on numerous occasions they couldn’t believe how tough and brave Hailey was. The tests lasted 3 hours. By the time we left the OR, her pain was at a 9. Moving her head made it worse. We went to a post operation room so she could lay flat and get fluids. The pain continued. Around 10:00 pm, the nurse asked her if she was ready to go home. I told him, No.”. His face was shocked and he asked me where we were going. I said, “That’s what you need to figure out. I’m not taking her home in this much pain.”

He hurried from the room and said he would call the doctor. The doctor was called at home and was shocked that we refused to leave due to her level of pain. He didn’t know what to do either. He also told me we couldn’t stay there. He said we had to leave.  “I again said I wasn’t taking her home.”

There was not any possible way to move Hailey from the bed. I couldn’t get her into the wheelchair. There was no way I could get her into our car and drive with her. Her pain was a 20 out of 10 by now. She couldn’t speak. She couldn’t turn her neck.

He told me he’d call me back. When he called back he told me I needed to take her to Children’s ER. I said, “You’re telling me I have to leave this hospital and take her to another hospital.” He said, “Yes, they won’t admit her age here.” They cannot admit anyone under the age of 18 years old.

The story goes on and on…a special doctor, let’s call him Dr. Superman, was called in the middle of the night to help with the situation. He helped get Hailey from the adult hospital and admitted to the children’s hospital. Hailey was admitted and spent yet another week in the hospital.

This update could be as long as a book. Hailey and I have been through so much. We went back and forth with our assigned doctor. He actually came in over the weekend when he wasn’t working to help us. They decided to take her off all of her meds. There were two medicines that should never interact with one another. There was one medicine that Hailey was too young to be on. Her meds were probably making her worse. So, they took her off of everything.

She suffered so much this week both physically and emotionally. We had moments of such hope! And, moments of such darkness. In the end, I had to be the mamma bear again. We were once again told to go out of state. This was what I was told the last time Hailey was admitted. I had been promised that we would not be abandoned. We would figure it out here at our home hospital.

As of this past Saturday, December 19th, we were released and headed home. We pray for a plan in place by the end of January. We pray that we can find another hospital and set up specialists that will take Hailey’s case on. How we will afford this….I do not know.

As a mother, I feel that ALL of the pressure is on me. Hailey’s life is in my hands. It is a lot of pressure to live in a diagnostic odyssey. I am not a doctor. Although, I have to make medical decisions every single day right now.

I pray for Hailey to have peace and quiet until her horrible 10/10 headaches go away.

I pray for her to be a gymnast again.

I pray she doesn’t give up on me.

Please do not give up on me.

Please hang in there until I can find the right team that will fix your headaches.

Please.

I beg of you.

Hold on.

Hold on.

Please hold on.

I love you Hailey.

Love,

Your Mamma Bear