August 14, 2016

 
August 14, 2025 - Today was another tough day for me.  Thankfully Amy Kinzer texted me the night before and asked if I would like to join her for a 4:30, IN THE AM, run start and I agreed because it has been hard to get my head around getting up in the morning.  I have never regretted getting up early to share trail time with friends.

I told Amy about these constant reminders and how I feel each time I see them.  After work I emailed this one to her and reading the words seem harder than the memories.  Partly because I know what was really happening behind these often rosy Facebook updates. 

The brass tacks version of this update would likely have said something like, Hannah is hanging on...just barely with the assistance of her ventilator.  Her platelets have stabilized, sort of, and the inflammation from the blood in her lungs and kidneys is going to start shutting down organs if something doesn't change soon.  The doctors estimate that she is up 32 pounds from all her issues and lack of kidney function.  She is so swollen and distended that they have taken medical tape and taped her eyes closed so her eyeballs don't dry out.  I sit in her room every night and stare at the ventilator dreaming of the day I can acquire one of my very own from a hospital and take it to the desert and unleash all of my anger, frustration, and sadness on it.

I showed this Facebook entry to Hannah while we were sitting on the couch last night.  She has heard the stories but hadn't seen it in this level of detail.  She said, wow that sounds horrible.  I assured her that it was and I am happy that she has no recollection of any of this.

August 1, 2016

 August 1, 2025 - After surgery Hannah was placed on an IV infusion of platelets from the Red Cross.  At surgery her count was less than 1 and with the infusion the staff in the PICU was able to keep replacement outpacing the destruction with limited success.  Platelets have a shelf life of 5 days from collection to use so it requires critical planning on their part to first collect them, get the tested safe, and in the hospital where they are currently needed.  Hannah was getting 2-3 units an hour.  The Red Cross told me later that her use accounted for 10% of all platelets collected during that time in northwest region.

We had a lot of people contacting us to ask what we needed or to offer support and it really was overwhelming.  Both Michelle and I wanted to just focus on Hannah's situation and our other three children but keep our family and friends updated.  We had three levels of communication:

1. Facebook, which was essentially "we are hopeful for a speedy recovery and Hannah is hanging in there." 
2. Family group text updates with the highlights of the parade of doctors giving us terrible news every day from 8am to 12pm. 
3. Conversations and texts between me and Michelle about what was really going on and how we could possibly get through this while trying to not let the worst-case scenario destroy us.

August 1, 2016 - (Facebook) "Quick update on Hannah since I know there are lots of people pulling for her. Her blood platelet count is up to 83 from 44 at noon. Still below normal of 150 but a lot better than her original number of <1. She continues to be fully sedated while her body heals and recovers, and we are hopeful for a speedy recovery. Thanks to everyone who has offered help, came by to visit, helped with kids, mowed my lawn, picked my garden, brought breakfast, lunch, took me running, the list goes on. Michelle and I are truly grateful."

July 30th, 2016

   

July 31, 2025 - It has been a long time. Every time I try and write this down I am crippled by all of the horrible memories that come flooding back and never get anything down. Internally, I also struggle with the fact that as horrible as all of the following days, weeks, and months were, Hannah's survival and recovery was as close to a miracle as I will ever experience.

July 31, 2016 - (Facebook) "Yesterday Michelle and I took Hannah to the ER after she was having a severe headache and she ended up having surgery to remove pooling blood from her brain. She is doing as well as can be expected and is getting great care in the pediatric ICU unit at St Luke's. Once she is no longer in critical condition they will begin to try and figure out what might have caused it. As bad as today has been it has taught me that I am incredibly fortunate to have a wonderful family and friends who truly care about us. Thank you all for your kind words and thoughts."

During surgery they removed a large section of her skull on the left side to allow her brain tissue room to swell without creating pressure.  We found out that night that she had a condition called idiopathic thrombocytopenic purpura or ITP.  ITP is a condition where your body cannot produce enough platelets and once your platelet count falls to a certain level your blood will no longer stay in the circulatory system.  This results in bleeding gums, heavy menstrual periods, petechiae hemorrhaging on the skin, and brain bleeds.  Hannah had all of these symptom but we didn't know until she developed the brain bleed.  Normal platelet counts are between 150 and 450. When Hannah went in for surgery her platelet count on the blood draw was zero.

Normally when someone has this surgery, the bone flap that is removed is placed in your abdomen so that when you are well enough it can be removed and replaced in your skull.  We didn't learn this for some time afterward but when we asked what happened to her bone flap we were told that it was thrown away.  I asked why and they told us it was for two reasons. First, with her low platelet count they couldn't risk doing another surgery and have her bleed out.  Second, they didn't expect her to live through the night.