12 hours later

I have said before we have not experienced the same 12 hours since the transplant 5 1/2 weeks ago. It still holds true. If I were to predict Sarah’s today based on her yesterday, I couldn’t have been more wrong.
Let me start off by saying sorry. As I reread my post from last night I found it a bit depressing. We wanted these imageposts to be as uplifting as we could make them and I missed the point last night. It would have been much shorter had I left out the frustration. I’ll share more about that in a minute. First I need to tell you about our new Sarah.
This morning she was pleased to report to me she felt rested and had a comfortable night. I am so grateful I insisted on having her receive the Zyprexa – that’s the drug that calms her down and helps her sleep. It did its job. She did have one short episode this morning while Dr Everett was examining her but it was short and she helped talk herself back. What a huge improvement. After participating in the rounds report with the doctors we were excited with the assessment that she needed to get out of ICU and up to the regular surgical unit. The nurses were kind enough to hold her room so we wouldn’t have to move all her stuff.
While she was having an extended music therapy session, I went up to the room to straighten it up. We left rather hastily Sunday and it was in need of a tidy up. I made sure everything was in order, the blinds were up with the outside light shining in and the lights on. I didn’t want her to have any feelings of chaos, frustration or any unnecessary distractions. We were back up by noon and Sarah settled right in. Fifteen minutes after arrival she was getting herself up to go to the bathroom and she did it mostly unassisted. I know that sounds routine, but for her it was huge.
At her own request we went for a walk. Last I was here, she was unsteady on her feet and was very apprehensive in trusting herself to walk. Today I asked her if she could make to the end of the hall to the window and back. She said sure. I asked her if she need a wheelchair behind us as a backup and she just shrugged her shoulders and said no. We went down to the window and back and she wanted to keep going. She didn’t even hang on to my arm. This was a totally new girl. We went down the other hall which is about twice the distance. Finished, she was tired but extremely proud of herself.
We changed the sheets on her bed from the hospital ones to her own brightly flowered ones. She put on her own pajamas and brushed her teeth. Wow.
I just need to follow up on my post from last night. We had a care conference scheduled this afternoon. That’s the one where everyone involved in her care meet to review and coordinate her care. It’s a lot of people in one room. It is an incredible experience to sit will all of the people to discuss Sarah. After thinking through my last post, I was prepared to charge in and speak my mind. But as I made my way through the day, a thought came to me. I could be the problem parent or I could be the parent trying to solve a problem. I settled on the latter. What a great meeting. I was scared to share my concerns and criticisms with the people taking care of my daughter. People we have grown to love. People who saved Sarah’s life. More than once.
I tried to do it as humbly as possible. My feelings are still very fresh. My emotions are raw. However I was able to let them know of the struggles we had had. To have them feel the feelings we felt. To see the loneliness we experienced and the absolute terror in seeing our daughter suffer so badly. I told them how tired and abandoned we had been. I shared specific instances.
I let them know I wasn’t searching for someone to be held accountable but that with everything I had in me, I never want another parent to live through the same thing we did because there wasn’t a standard operating procedure to handle the issue of ICU psychosis. Which through this meeting we all discovered it should more appropriately be called delirium. This has never been adequately addressed here. In preparation for the meeting it was reported that 80% of adults in an ICU, long care facility environment experience some level of delirium. It can manifest in many different ways and levels. So, if can be that prevalent among adults, why not kids. Mainly because they are seen more as being difficult and because they cannot communicate the same as adults, this had not been raised as a problem. Well, I think, now it has in a personal, rational, passionate and emphatic way.
There was a firm commitment to researching the issue, putting in procedures and training the entire hospital staff to better deal with the issue of delirium. 30% of delirium can be stopped in the early stages if the signs are caught in time. I think when your mission is to heal the whole child, this is one area that can no longer be avoided. I asked to make sure that there are procedures also to include instructions to parents on their roles in this difficult experience. I offered our family as a resource to use our experience as a template to move forward.
For the first time in four days I felt listened to. I believe it was productive and useful. For me it was therapeutic.
I expressed my appreciation and love to them. I still trust them with Sarah’s life. While this was traumatic, there is still no place else I would want her to be. Her care has been superior and this will make us stronger and better advocates. When completed, this project will make Primary Children’s Medical Center an even more miraculous place.
The numbers on the monitor in this picture may not mean much to those not familiar with Sarah. For all of her life she has been “blue”. Her blood was mixed. A regular person’s oxygen saturation in their blood may be in the high 90s. Maybe 98 or 99. Sarah has had her stats in the low 80s. As a result she never really had energy. But she lived life anyway, despite how bad she felt. As we were settling back in to her room today, I looked up at the monitor and for a brief moment, she hit 100%. Now that’s a miracle.
So, here’s to another 12 hours. I wonder what they’ll bring…
-Steve

1 thought on “12 hours later

  1. Thanks for your taking the time to give this extensive review of the day. Not easy to do when mentally one is nearly exhausted, but nevertheless a blessing to many. Mom and I enjoyed immensely being with you and Sarah yesterday at such a significant moment in Sarah’s road to recovery. The hand of Providence has been evident all along that road, and one must not be distracted by short-term setbacks, but remember promises made through sacred administrations. Love to you.

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