Day 10: Stella Update (actual Facebook post)
We thought this day would never come – Stella going home! Her caregivers have mentioned since Saturday the possibility of us going home today but we knew the pitfalls of getting our hopes up. It seems every day something popped up that warranted an extra day of observation – retaining too much fluids, getting handle on withdrawal, not urinating, body tremors, fever, high blood pressure, etc… Today was no exception. The Doctor this morning told me she’d like to watch Stella for another day or so to make sure she’s ok. Put off by having to wait yet another day despite everyone saying she looked a lot better, I asked “what does she need to accomplish to go home?” (Please understand I would never compromise the health of our children but I do expect reasonable explanations.) I was already leery knowing the conflicting directives we had received the day before (eat/don’t eat, remove feeding tube/don’t remove, take diuretic/don’t take diuretic). I believe I caught the doctor off guard with my direct question – i’ve never been a fan for beating around the bush. Stunned, she paused for a few seconds, then said, “you’re right. She can go home today. I don’t see why she can’t. She’s eating, breathing fine on her own and you’re able to give her all her meds orally…why not. Besides, she’ll probably do better in a comfortable environment.” And just like that we were cleared to go.
The long drive home
The drive home required driving through a stretch of road construction that was about 3 miles. As I was driving I couldn’t help but think the construction was an analogy for our last 10 days. Road Construction is like life in so many ways – no matter how much planning you do to accommodate future growth more changes are always required and you can’t judge the success of the project (road/life) by how it looks half way through completion. As I was driving down the newly laid asphalt I couldn’t help but recall how 6 months prior it was a traffic nightmare – culverts everywhere, construction equipment, temporary driveways for homeowners, etc… Perhaps Stella’s situation was like this road. Perhaps we just completed all the initial infrastructure work and we’re doing the final grading, preparing the surface for the new asphalt. Perhaps in a few months our little Stella will be not just back to normal, but even better. I won’t even speculate on what this could be but the possibilities are very exciting. What if we approached every obstacle, tragedy or roadblock as a growth opportunity. If we did, would we have a different attitude when we encounter life’s challenges? I’m a firm believer everything has a meaning and a purpose. The problem is too many of us are too busy complaining about how unlucky we are to realize just how blessed we are. I’ve seen more than my share of suffering over the last 42 years and realize humans are very resilient and can do amazing things when they have or want to.
Coming home was surreal yet overwhelming. As soon as we stepped out of the van reality set in. We realized we got our wish…we were now officially on our own. No nurse to give correct dosages of meds, no dr down the hall to ask if her breathing was ok and now we had our 4 other kids to contend with. Our 10yr old made a welcome home greeting and had it waiting for us on the front porch. As we starting walking through the front yard our 3 boys came running out in their socks screaming “Stella, Stella.” They were clearly glad to see her. Once we got inside they were all over her, talking to her nonstop, touching her, basically mobbing her like the paparazzi. Strangely enough she didn’t seem to mind although Brooke and I feared a tragic meltdown from sensory meltdown. As the day passed it was apparent Stella had overdone it. She became very irritable and quickly agitated.
Part of our unpacking including mapping out her medication schedule for the next 7 days – including 2 shots in her thigh each day of the blood thinner for the clot in leg for the next 6-12 weeks. The pain meds for the withdrawal require us to set alarms throughout the night to keep the weaning schedule. The medication schedule really makes us thankful this is hopefully not something we have to do forever. Pretty amazing to think there are many parents that do this every day for the rest of their kids childhood. Every time I’m tempted to complain I think of those that would give anything to be in our situation. When it’s all said and done, we’ve had a blessed life grateful for whatever comes our way. Thank you Jesus for answering our prayers and bringing our sweet little Stella home. We know you are just preparing her for bigger things down the road.
November 23, 2016
Fast forward 5 months. Little Stella is no longer on the blood thinner shots and has been seizure free – just a few scares with small fever spikes. Stella slept in our bed for the 1st 3 months while she was on the blood thinners but she is officially back in her big girl bed and sleeping through the night. It also appears the PTSD has subsided. Our first 3 months of follow-up doctor visits were extremely painful as she would scream uncontrollably at the mere site of a doctor, nurse or anyone in scrubs (including her aunt Heather when she came to visit at our home). We still travel with an emergency seizure kit every where we go. The doctors still don’t know what caused the seizure but for now they’re calling it a complex febrile seizure, even though her fever was only 100.1 (they think the rate of the small fever spike could have triggered the seizure).
Moving on, picking up the pieces
As a family we have decided to move on an put the past behind us. We will not live in fear or think we’re just one seizure away from repeating this experience…who can live a productive life like that and what a disservice it would be for our other 4 kids. Instead, we’re focusing on living in the moment and being Thankful for every day we have with our kids. We’re not going to put off the cool vacations thinking they might be better if we wait until their teenagers (went to Yellowstone this summer – best trip ever!). We’re not going to put off visiting friends and family despite always being crazy busy (we will make a conscious effort to spend time with those we care about). What we are going to do is live life to the max, a life of no regrets. For starters, this years Christmas Lights will be over the top (it’s not like every year isn’t but I have already put a few thousand extra out in the yard and got one more 12′ blowup). WE ARE SO THANKFUL this year for all our blessings and pray the way we live our lives is evidence.
To read about Stella’s journey from the beginning, read Day 1: Watching our 2yr old fight for her life… 10 days to be Thankful!
About Shay
Shay is an All American and World ranked triathlete, burn survivor with scars over 65% of his body and is a sought out national motivational speaker. Despite being told he’d never compete in sports again at the age of 8, Shay is living testament to “Anything is Possible”: 4x Ironman, 4x member of Team USA, ranked top 1% of Ironmen worldwide and has competed in 9 triathlon world championships, including the Ironman World Championships in Kona, Hawaii. His mantra has always been to not merely be a “finisher” but to be a “competitor.” If you enjoyed this article, I encourage you to check out his other posts.