Friday, September 23, 2016

Night #1 & Day #1 of Hospital Visit

After a very long day at the hospital on Tuesday, Ellie and I came home and everything seemed normal. We all ate dinner, put the girls to bed, and then Mike and I settled in to watch TV for going to bed ourselves. Around 10 pm we were ready to go to sleep. Like every other night, we always go in to check on all three girls. I opened up Ellie's door and immediately heard her move and make noise. She was awake. Red flag #1. As I approached her crib, I smelled something, probably vomit. Red flag #2. So, in the dark I asked Ellie if she was sick and had thrown up. She said she she did not, so I turned on the lamp to check out the situation. No vomit. Instead, Ellie's area around her port, her shirt and her sheets where she was laying were soaked in blood. She was bleeding from where her port had been accessed earlier in the day. This was not good.

If I may, let me pause for a moment. There have been so many instances during Ellie's treatment, and certainly during this week, where she has had major, crazy stuff happen to her. (That's the technical phrasing.) But in the moment, in never seems that way. Then, I reread what I have posted, or relay to someone else what a doctor said. It's then that I realize how utterly unreal this entire experience is. 

"Ellie is having an allergic reaction to the platelets she's getting. She's having difficulty breathing."

"Ellie is bleeding out from her port and her side is covered in blood."

"Ellie's number are not going up. She needs platelets and blood, yet again."

Any one of these on their own are a risky and scary situation, and Ellie had all of these happen on Tuesday! Cancer is not normal. None of this is normal. Miraculously, as we have gone through this process we have never felt too overwhelmed with Ellie's treatment. While all of this has become our new normal, Mike and I have never lost sight of how extreme all of this truly is. 

All of this to say, we may have become desensitized to the severity of every decision along the way. We may talk nonchalantly about lumbar punctures, blood transfusions and chemotherapy, but we still realize that this is not a normal experience that Ellie is living right now. Within the bubble of pediatric cancer? Yup, totally normal. Outside of that bubble? Real life? This is a crazy, unbelievable experience. 

I don't know if I was able to convey that properly. So, thank you for indulging me.

Now, back to the blood. In that moment, we were pretty calm. We already knew that Ellie's platelets were low, and they were likely still low, even after the transfusion because she was not clotting properly. The spot where Ellie had been accessed earlier in the day must have clotted at some point because she was not bleeding when she went to bed. Somehow it became dislodged, and that's when the slow bleeding began. We immediately called the NP on call, and she suggested putting pressure on it to see if it would clot. After about 15 minutes of doing that, we realized that while the flow was slowing down, it was not clotting. We already knew that she was neutropenic, so that combined with the low platelet count, labored breathing, low grade fever, pale coloring and general irritability, we made the decision to take her to the hospital that night.

I snapped this picture of her just before we left.
The blood had already been cleaned up.

Mike stayed at home with Eva and Nora, and Ellie and I arrived at the hospital around 11:15 pm. She was immediately admitted to the floor and our long day turned into a long night. Ellie was immediately given an antibiotic in case there was an infection, and then ordered to get a chest x-ray. 

This all went down at 1:20 am.

Both of us finally got to sleep around 2:30. There was a couple of interruptions during the night, specifically regarding platelets. The doctor wanted her to receive more, but I was hesitant. Since Ellie had an allergic reaction to her transfusion earlier in the day, and it was now 4 am and I would likely be asleep when the platelets arrived, I didn't want to risk another reaction and me miss it. Valid point. However, the doctor reminded me that if she did not receive the platelets then she could continue to bleed. Better point. You win. So, Ellie received her second platelet transfusion around 6 am on Wednesday morning. After a long night, we were both able to sleep in a bit. 

In case you are wondering, that pillow says "World's Best Mom".
The girls gave it to me for Mother's Day this year.
Ellie quickly commandeered it as her own and now sleeps with it every night.

Wednesday was spent mostly in bed, often with Ellie sitting on my lap. She was able to do some painting, but mostly just wanted to watch Daniel Tiger.

This has been my view a lot recently.

The excessive bleeding (from her gums and her port) have stopped. But, she is continuing to bruise on her body and has developed petechaie, small dots caused caused by bleeding into the skin.

We moved into a room on the oncology floor of the Children's Hospital, and Ellie received a blood transfusion later that day. She had also been showing sign of severe abdominal discomfort, so an ultrasound was ordered to rule out anything severe. Unfortunately, that happened at 10:30 pm that night. 

The ultrasound was a miserable experience for both of us.

The results ended up showing nothing. My initial suspicion was constipation. These past two days have proven that suspicion to be correct. She has received lactulose to help with her constipation, and slowly she has become less irritable when using her diaper. 

This is an abrupt way to end this post, but Ellie is nearing the end of her nap, so this is all I am able to write for now. I will try to update again later this evening. As a heads up, Ellie will continue to be in the hospital for several more days.

Please continue to pray for Ellie's complete and permanent healing.

Please pray specifically that Ellie's body begins to accept the platelets and recovers enough to make her own.

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