In our wildest dreams we would have never thought a normal Friday evening would turn into a fight for our daughter’s life. We would have never dreamed a normal 2 year old, with no medical or family history of seizures, would spend 7 days in PICU on a ventilator. We would have never dreamed recovery from 7 days on a ventilator was just step 1 of a long recovery process, much less that our daughter would suffer from withdrawal due to the heavy sedation and be placed on a methadone recovery program. It is times like these that test our faith and make us question the uncertainty of tragedy and why it exists. Though tested beyond any capacity we hope to never repeat, I can honestly say our resolve has been strengthened and reaffirmed. We do not believe God is trying to punish us or even that He has abandoned us. Rather, we believe it is part of a grander plan to be revealed in due time. We share our journey and hope your faith and thankfulness for all your blessings are reaffirmed this Thanksgiving!
Day 7: June 16, 2016 (actual Facebook post)
At 4am the heavens opened and we were touched by God’s healing hands. Those healing hands took Stella off the ventilator and removed the breathing tube from her throat. Brooke and I were obviously awake as there was no way we’d miss the big event. Now I know how people feel when they win the lottery. We had hit it big. I was already thinking of all the fun things we’d do when she gets home, much like the lottery winners dreamed of sports cars and mansions. I wanted to run and scoop her up in my arms and then the reality of her condition quickly sank in.
She had a look of fear in her eyes and repeatedly kept saying “no” every time one of the caregivers got within 10 feet of her. It was almost comical as she would say “no” even when they weren’t even touching her and just removing pieces of equipment and tangles of hoses. “NO” was the first word we heard her speak for over a week. We couldn’t help but wonder had she been saying “no” repeatedly for the past week and it was just muffled by the breathing tube. After an hour, the magical moment came. I was able to hold her in my arms once again. As hard as I wanted to squeeze her, I was acutely aware of her sensory overload and need to be comforted. I wanted so bad for her to tell me how much she missed us, how scared she was, what was hurting and then it occurred to me she was only 2. But the look in her eyes conveyed everything I needed to know – she was terrified beyond comprehension and wanted nothing more than to be assured it was all over. It wasn’t for several hours later that I would receive the reassurance I had waited for all week – hearing her say “dada.
Little did we know (and it wasn’t that we weren’t told but we rather we had just placed so much emphasis on healing being tied to the removal of the breathing tube) we underestimated just how much more healing Stella needed before we could go home (the lungs were just phase 1). Late last night we started seeing her having body tremors and sweating profusely, the tremoring/body shakes progressing as they continued to wean her off pain meds entirely. The tremors we soon learned were signs of withdrawal due to the large amounts of sedation she received the past week. To add insult to injury, not too long after the breathing tube came out she also had a fever again, immediately triggering thoughts of another febrile seizure. This was even scarier as she could only receive Tylenol (not able to receive ibuprofen due to the blood thinner she was on as a result of the blood clot in her leg). We were informed the fever was another sign of withdrawal and the tipping point for them to officially classify her as suffering from withdrawal. She also suffered severe diarrhea, another lovely sign of withdrawal.
As we starting digesting the treatment process involved with the withdrawal (phase 2), we soon learned of the physical therapy (phase 3) she would need to regain full body functions. We both knew she’d be weak from laying down and under heavy sedation, but had no idea
it would require potentially 7 weeks for her to get back to full strength. Her therapist informed us the rule of thumb is 1 week for every day for hospitalizations such as Stella’s.
It was heart wrenching to watch her incapable of just sitting upright in bed knowing just a week ago she was running through our back yard and climbing the playhouse with her older siblings. We’re not deterred, just another element added to the learning experience. We knew she’d require some time to get back to full strength, but had no clue we were talking 7 weeks. The more time we spend here, the more we realize just how seriously sick Stella really was and how fortunate we were to be at Vanderbilt.
Today was a monumental day and we are so thankful the awful breathing tube was removed. We are so incredibly happy to hear her say “momma” and “dada” and watch her show facial expressions. We even heard her giggle temporarily. One of the more moving moments today was when our other kids came to see her. Our 8yr old son was standing at the foot of her bed and we asked her “who is that Stella?” She quickly replied “Mad”, her nickname for Maddox. Brooke looked at Maddox and noticed him wiping tears from his eyes.
Somewhat embarrassed he was moved to tears, he quickly said “mom, I have something irritating my eye.”
We assured him it was perfectly normal to cry and that daddy was crying too. You’d have to know our son and what a rough houser he is to know how special it was for him to be moved to tears just by his little sis calling his name.
I won’t lie and say the daily regiment here isn’t growing old and tiresome, but we are moved by inner strength (faith) and celebrate the smallest signs of improvement. We know there is an end in near and we will not quit until the task is done. Our hearts go out to those who have similar struggles but don’t have the same assurance their kid will ever get better. We are truly blessed and so thankful for all the prayers. Little Stella is the luckiest girl in Nashville to have so many cheering for her recovery. Her little smile wipes away the sleepless nights and countless setbacks. Little did we know the significance of her name when we chose it 2 years ago “Stella Maris” – “star of the sea”, Biblical reference to Mary. Coincidence? I think not.
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!
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 my other posts.