Pulling for Hayden

Hayden was initially sent to University Hospital in Columbia, MO where she spent 5 weeks in the ICU. Both of her clavicles were broken, she had 6 broken ribs on each side, both sides of her pelvis were broken, and 3 of her lower spine, a hematoma at the base of her skull, and her right carotid artery (to her brain) was practically closed off. At University Hospital in Columbia, MO, the doctors repaired her clavicles, pelvis, spine and kept an eye on the carotid artery and hematoma. Hayden came through all of the surgeries well, and by the time she was getting ready to leave Columbia to her next destination, the doctors were going to put in a stint in her carotid artery, and it was miraculously open to 30% when they went in to check it! This was huge, the neurosurgeon decided to just keep an eye on it and see if it would continue to open back up.

Next phase, Shirley Ryan Ability Lab in Chicago, IL for intense rehabilitation. Hayden spent 4 months in Chicago working hard on regaining consciousness and physical movement. In a month she was doing great, becoming more aware, responding to commands at times, such as turning her head to voices, etc. Then, she had her first medical setback. She spent about 2 weeks at the Children’s Hospital before being able to get back to rehab. They found hematomas in her glutes, basically, pools of blood in her buttocks. None of the doctors have ever seen this, but she was on several blood thinners so those were stopped. Back to SRAL for light therapy for two weeks before she could get back to intense therapy again. Then she got an infection and had to stay in her room for therapy. Once better, back to intense and here came another infection. Seems she has had medical issue after medical issue. After about 3+ months there, we were told insurance was beginning to fight back because she was not improving to the level they (Insurance) expected. Although, she had gone from 16 to 23 on her DOCS score a couple of weeks before. But they apparently expected that kind of jump each week now. So, insurance decided to stop approving her intense rehab and she would have to move to a lower level of care.

Next stop, Rankin Jordan Pediatric Bridge Hospital in Maryland Heights, MO. The doctors and staff at RJPBH were great, but she was not receiving the kind of therapies that she was previously. The most physical movement she got daily was being rolled over to be changed and being hoisted up into her wheelchair. They did have a very nice outdoor area, where we could take her for short walks and sit outside when it was not too hot out. After 3 weeks at RJPBH, she ended up in the ICU at St Louis Children’s Hospital in St Louis, MO. She had strong dystonia, which made her heart rate and blood pressure continuously high. So, it was add more medications, adjust other medications, and see how she responds. After another 5 weeks at St Louis, we made the trip to Kennedy Krieger Institute in Baltimore, MD.

At Kennedy Krieger Institute, they have a Disorders of Consciousness program and we are working with the doctors and therapists to get her going again. Adjusting medications, adding and stopping medications, and she is receiving 3+ hours of therapy every day. She receives Physical Therapy, Occupational Therapy, Speech Therapy and some Recreational Therapy. She is improving but still has a very long way to go. We are still waiting on that magic moment when she will emerge, be fully aware and awake and be able to work on getting back to enjoying life. Right now, she is working hard in therapy and on becoming more aware.

Due to all of the different facilities we have been to, we have had a lot of costs in travel, besides trying to maintain our house at home. We are going to need to make handicap accessible improvements at home, and purchase a handicap vehicle. In addition to finding nursing care for Hayden at home and all of the continuous medical supplies she will need.

We are so very Thankful to everyone who has sent a prayer, donation, gifts, calls, texts, the list goes on. We are so blessed to know that so many people have been praying for our Baby Girl through this difficult time.