Haines Wainwright

First post: Jun 12, 2022 Latest post: Jun 23, 2022
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On July 20, 2021 I tucked my healthy and happy 15 month old baby into bed. We had spent the evening eating sushi with his Mimsy and running outside past our bedtime. That was the last time I saw Haines walk. That next morning is when all of my biggest fears became a reality. 

I left for work that morning with Haines still sleeping and received a text around 10 o’clock from our wonderful nanny Robyn (RaRa) asking if she should wake him up because he was sleeping a lot later than normal. I told her yes and that it was time for him to start the day. The next text I received said “Please come home. I have called 911.” She couldn’t answer my phone call because she was talking with the 911 dispatcher. I drove so fast that I beat the ambulance. I walked into my baby’s bedroom to find him unresponsive and barely breathing. I can’t describe that feeling and I hope you never have to experience it. The EMTs quickly arrived and carried my baby out of the house and into the ambulance. I fell to my knees in our front yard begging God to save him- my parents arrived quickly after that and they let me jump in the ambulance headed to Macon. My mom was able to get in touch with Tyler and is dad drove him straight to the hospital. Haines had a blood sugar of 36 and was unresponsive. I will never forget how kind the EMT’s were to me that day. As we arrived to the hospital my friend and sorority sister Karlee happened to be the nurse who greeted us. She had no idea that it was Haines coming in and quickly jumped into action without skipping a beat. I am forever grateful to her and the Emergency Department at The Children’s hospital. 

We were admitted for what they thought to be febrile seizures. We were supposed to stay 24 hours for monitoring and go home the next day. I requested an MRI to be completely sure. And that next afternoon things took a turn for the worst. 

As I was changing Haines’ diaper I noticed that he was looking in one direction and not blinking or reacting to anything I did. I called in the nurse and several people came in right after that. He was having a seizure- it lasted 5 minutes. About 30 minutes later the doctor came in and kneeled in front of us. She told us that there was significant swelling on the right side of his brain and that they would be transferring us immediately to the ICU and then we would be transported to Scottish Rite’s PICU. When we arrived in the ICU we noticed that Haines has completely stopped moving the left side of his body- this was a result of the seizures damaging his brain. 

We were transported to Scottish Rite by three of the kindest people I have ever met. They let me ride in the front seat of the ambulance and would call the phone up front giving me updates on his condition. I will never forget getting out of that transport   vehicle and hearing them say “he made it.” That was when it hit me- this is serious. 

I immediately felt God’s presence as we walked into the PICU. We were greeted by three sweet nurses- one of which I had met at a New Years Eve party a few years ago (thank you, Jesus.) We immediately saw the doctor and settled in for the night. The next morning we were the neurology team’s first patient. They examined him, put on a 24 hour EEG (which he wore for 16 days after that) and they scheduled a repeat MRI. That morning things took a turn. The doctor came in to tell us that he was contributing to have rapid seizures, the longest being 30 minutes long. I will never forget her words: “he is getting worse.” Later that day he went down for his MRI- it was the first time I was unable to be with him. Dr. B (who was sent to me by God himself) promised me that she wouldn’t do anything to put him in danger. Mom finally convinced me to walk outside for a bit but the minute we stepped outside my phone rang. His stats dropped in the MRI machine and they were going to have to intubate him. 

Thankfully, he was extubated the following afternoon and the seizures were slowing- so we thought. The nurses’ phones had a specific ring- I still hear it in my sleep. Every time our nurse’s phone would ring I held my breath praying it wasn’t the EEG team calling about another seizure. Unfortunately, that call kept coming. One night they got so bad that they came and and told us to prepare ourselves for what could happen. That next morning Dr. P took over our neurology team- he came in with confidence and an amazing disposition. He told us what the plan was and how we were doing to execute it. We met with infectious disease to try and rule out bacteria infections. They finally (after a week) came to the conclusion that it was most likely Post Viral encephalitis. Meaning Haines test positive for adenovirus (the common cold) and instead of attacking the virus his immune system ramped up and started attacking his brain. The seizures continued to get worse throughout the next few days and they were forced to intubate him again. The plan was to put him into a coma and turn his brain off so it could get the rest it desperately needed. They continued to turn up the sedation medicine and he continued to seize. That night our nanny RaRa sent me a text: “God is going to heal him. In 3 days time.” The 3rd day was the last day Haines seized. 

While on the ventilator (10 days) he remained on serious sedation- he had stopped seizing on a high dose but they could not get him in the coma state. Dr. P and Dr. B both said they had never seen a child on that much sedation that was still conscious. As Dr. P would say “he is robust.” We did a repeat MRI and did not get the news we had hoped. The swelling had gotten worse- I was devastated. Another punch in the gut. He told us that he saw pretty significant brain damage on the right side of his brain and that they didn’t know what kind of deficits we would see when he woke up. I didn’t know if I would ever hear my baby say “mama” again or see his sweet smile. I was shocked when Dr. P said that we were going to start weaning off the sedation that next day. His words were “We won’t know until we try.” Have I told y’all yet how thankful I am for him? He’s the best. Seriously. It took 7 days for them to wean him off of the sedation. He never seized. The longest 7 days of my entire life- every time a nurse walked in, every time the phone rang, every time a machine went off I thought it was a seizure.
For those 7 days I would ask Dr. B every day “have we turned a corner?” She always replied “Not yet.” Oh Avoly of little faith! After these 7 days Haines began to wake up. His left eye was completely turned in. The hardest few days were watching him with a breathing tube and cry but not make any noise. The day that they extubated him Dr. B said “Ask me again.” And so I did and she replied- “yes we have turned a corner.” We were transferred to rehab the following Friday- just days after his extubation. Dr. P told me no matter what the deficits were “knowing this kid- he’s going to kick rehab’s butt and be running.” 

Looking back now on our time in the PICU I see God’s bountiful blessings. He put the most amazing people in our path ( some of which I already knew and reconnected with.) I hope you always know how much you mean to us! You know who you are. I have said it before and will say it again: Angels work at Scottish Rite and miracles happened in PICU 29. I watched it happen.

If reliving the darkest and worst moments of my life gives you hope and shows you that God can and will work miracles in your life than it was more than worth it.

For His glory,
AW

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