Thursday, July 22, 2010

Day 4-change of plans

Cloey's sleep study was moved to today, so we didn't make it to the zoo : (

The good news is we will probably go tomorrow, and be coming home Monday.

The not so good news is that we have decided to sign a modified DNR for Cloey, allowing respitory and pain control support only.

This trip, our last Mayo trip and her symptoms have concluded that there is irreversible damage to her brain, causing her autonomic nervous system (basically everything you're body does automatically: breathing drive, heart rhythm, pupil dilation, bladder/bowel control, etc.) to not function properly.

When she was born her skull was abnormal causing pressure on the lower part of her brain stem & spinal cord. This was discovered on our first trip to Mayo when she was 2 1/2. we did a decompression surgery (removing bone in her skull & spine) to relieve some pressure. It wasn't enough & subsequently fused her entire cervical spine to prevent damage to her brain or spinal cord. after the first surgery she showed some "signal changes", a black line on her MRI. she lost her pincher grasp in her left hand and had some overall left sided weakness, Hardly noticeable though. The spinal cord can usually grow around damage like that and she would probably recover. Since then her breathing etc. has deteriorated but there has always been another possible explanation. She has a spine x-ray every year and they have been perfect, no new growth or anything. It wasn't until this trip that all the pieces started to fit together and point to her brain & spine.

There is no way to tell if the damage was there when she was born or was caused during the surgeries, and it doesn't matter, she would be paralyzed from the neck down if we had not done it.

There is no "fixing" the brain. we have the choice to try to stay one step ahead of her symptoms (eventual 24hr vent dependence, colostomy bag, pacemaker, repeat spine surgeries, etc. etc) we could probably manage her for another 10 years, but it would be quantity not quality.

Cloey does not want that. she tells me she wants to take her g-tube and trach out. She wants to play with other kids. Today when we showed up to the hospital for a sleep study she wouldn't talk to me. She was kicking me and saying she wanted to go home.

As Ty and I talked about what to do, we remembered that all we have ever wanted was for her to be a kid. all the fighting has been to give her some kind of life. If we wanted her to just stick around and be on machines we could have stoped trying in the NICU. We could have put her in a group home.

What all of this means is that Cloey will still be on the vent, but minimal hours and rate, just enough to keep her comfortable. If she needs CPR they will do breaths only and not chest compressions. We might continue to do minor surgeries like ear tubes, just to keep her out of pain, but we will not be "fixing" anything. We will manage her care primarily at home, with a possible scheduled maintenance trip to Mayo once a year, should Cloey decide to fight the system like usual and stay with us for a few years. basically we will only be doing supportive care and allowing God and Cloey to decide when her work here is done

Are hearts have been heavy all week. we really hoped they would find something fixable. We truly appreciate every one's support & wish we could say "Thanks to you, Cloey will be fine" but instead it's "Thanks to you we were able to confidently make the hardest decision of our lives"

We will get the results from the sleep study in the morning but are not expecting any changes. Ty will be flying out here on Sunday to help me get Cloey home safely on Monday. Then we will start the process of signing the DNR and giving it to all of her nurses, care providers, etc.

While I am extremely sad and get physically sick when I think of losing her, I watch her and realize how much of her life she has spent being "handled" by doctors, nurses, therapists, caregivers, us~

It's time to let Cloey be a kid, even if it's only for a short while.

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