Christmas Eve….. I sat quietly on the fifth floor of CHOC hospital with Savanna – our Christmas Angel – as she continued to battle with significant hypertension, a side effect from the ACTH. The silence was suddenly broken around 10:45 pm by that familiar ring tone indicating a text message had arrived. It was a message from some friends that had moved north but were following her story, asking if we were home yet. They probably just finished putting presents out for their little ones, probably saying a prayer for Savanna. I was touched but replied simply “not yet” as not to unload on them in a number of run-on text messages. I began recounting the week’s events and it was overwhelming. The moment was solemn and the reflection was chilling. I replayed the conversations with all the doctors about the situation, and the bottom line was this was the only treatment available with a chance to have good results, whatever the collateral cost. We were told by the Neurological team, the primary issue as that we learn to administer the medication and that we procure the medication prior to discharge. We have since learned that the Neurologists tend to be 40,000 foot people with bedside manner. Meaning, all the minor details like ‘otherwise okay’, well, it just a detail. The weight gain was significant, nearly a pound the first five days (almost 10% of her weight). The sleepiness was significant, as she seemed to barely be awake throughout the day. But the hypertension became dangerous and ultimately was keeping her admitted until under control. Seemingly under control from my view, I decided at that moment Christmas Eve we had enough of the hospital I was going to take her home for Christmas.
The next morning came and I remember talking with the attending physician about Savanna’s case and stating I wanted to sign the waiver for her discharge. Looking back, while in the end okay, I was somewhat off-base with my arrogance, but I was convinced it was for her better good and the good of the family to have her home for Christmas. Her blood pressure was down to around 90 (still high), but low enough that they felt she could be discharged. Regardless, I was prepared to sign the waiver. At 11am I walked out of CHOC, 8 days after our ordeal had begun. I packed her up, fired up the F150 and away we went. Having lived in CA for nearly 10 years, I had never been there on Christmas Day as we typically traveled East to see family. Driving home, I thought I was in the twilight zone. Did the Apocalypse happen, and I missed it? There was no one on the roads. No one was walking the sidewalks. Few stores appeared to be open. It was really, really weird. I thought maybe I missed some kind of ‘Stay Inside’ warning from the government? That was definitely the sleep deprivation kicking in there.
I knew the reality of 2 and 3 year old boys at Christmas that I was walking into, and had to put on a charade of happiness and excitement at some level. The gravity of the situation really changes your perspective, especially in the moment. Somehow Rebecca managed to stay strong through Christmas morning for the boys and celebrate with them. The feeling of arriving home with Savanna on Christmas was intense. All I wanted to do was have some time with Rebecca to connect, but had to instead had to be very attentive to the big boys and their new toys. I remember praying to God to let me have the strength to be excited and happy with the big boys as I knew I didn’t have the fortitude to do it on my own. Yes, I was happy for the boys, buy it just seemed like the magnitude of Savanna’s situation just overshadowed anything else that was happening around me. Amazingly, the sight of innocent joy exuding from my boys playing in the driveway upon our arrival became infectious. Rebecca was celebrating Christmas as best she could with the big boys along with Rebecca’s parents who left behind the majority of their family to be with us in California. The feeling of bringing her home was filled with many emotions happy and sad. The second best moment of the day was feeling the genuine love conveyed in the hugs from my boys as they were overwhelmed with excitement and just could not hold it in.
The best moment of the day was delivering our Christmas Angel to Mommy, and one I will never forget. There were some tears shed and prayers said, and for a moment all was well and right in the world.