Sunday, May 15, 2016

Day 15: The Worst Day

19 months ago today, we experienced the scariest night of our lives.

Tillery had survived her first 2 brain surgeries and then had developed a blood clot in her brain. To help resolve the clot, Tillery was put on blood thinning injections twice a day.

On November 15, 2014, we had spent the day with wonderful friends from home who came to visit in Cincinnati. We had just returned to the Ronald McDonald House from dinner. Joe was giving Luke a bath and I was getting Tillery’s medicines ready. I laid her on the bed and turned to walk a few feet away to draw up her injection. That’s all it took. In a split second, I turned back and witnessed Tillery falling onto the wood floor and hitting her head.

The next few moments consisted of me dropping a needle and running to pick her up, her crying that turned to silence, and Tillery’s eyes rolling back and her body going limp in my arms. I froze, unable to handle what was happening as my child lost consciousness. Joe took her from me and ran out of the door as I quickly made phone calls to the hospital letting them know he was on his way and calling our friends to come and get Luke.

Trauma bay #2 was a frenzy of nurses and doctors and specialists. Some faces familiar but many were new. One new face was the chaplain who stayed at our side the whole time, instilling a fear in us that if they asked him to stay close they must think the worst was happening.

A CT scan showed she had a bleed in her brain and that combined with the blood thinners could be fatal. They said she needed to wait at least 12 hours before they could safely take her to the operating room to stop the bleed. Instead, her pupils stopped being responsive to light and her left side was paralyzed within about an hour. There was no time to waste, they had to take the risk and go to the OR. They told us she would likely bleed out. They told us there was no other option. So, we signed the papers and off they went.

Our daughter survived that night and the 20 months since. Now we are preparing for surgery again 2 months from today to replace the bone flap on the right side, the same bone flap that was removed 20 months ago to relieve pressure from her bleeding.

It’s more than just a brain tumor. So many things have happened as a result of her diagnosis. The tumor caused the surgery, the surgery caused the clot, the clot caused the injections, the injections caused the bleeding, the bleeding caused the bone flap removal, the bone flap removal caused her bone to not hard fuse, which is why we have to go back to the OR.

Pictured below is Tillery after surgery for her brain bleed - there is a drain coming out of the side of her head that you can see with a pouch filling with blood. They drained that pouch multiple times a day for many days. You can also see a bag of platelets running into her PICC line. Platelets saved her life that night. Other pictures are of her in the helmet while her bone flap was out and a picture of her head when her bone flap was out. That picture is hard to look at but it was also heartbreaking for us to look at daily for 2.5 months. Her head is like that again now because the bone is pushed into her skull with a soft fuse around it.

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