- Tarah OSullivan
It has been 10 days since our lives drastically took a turn. I think now that the dust has slightly “settled”, we can all start to try to process what in the world has happened.
One thing that I am 100% certain of.... last Wednesday God allowed us to see a miracle. I simply do not know any other way to explain what happened to Drake. And honestly, I am not taking any glory away from our Father for the works He preformed. Trying to say what happened was a "freak turn of events” would be discrediting Father’s hand mightily moving.
God granted our family a miracle... and, I am going to do my best to try to write down what happened and to make much of our Heavenly Father. He deserves all of our worship and praise. Father, help me to make much of you.
Ok, here we go. Let me try to explain what happened last Wednesday, July 20th....
Three weeks ago, Vivian started to show increased arching, which for her, she does not have as many seizure events like Drake, but does present with arching spells from our metabolic complications. We always have to evaluate if their seizure increase is from a slight dose change from our regiment, or if there could possibly be some sort of sickness presenting. She stayed arching for about two days when we then noticed Drake’s seizures were increasing a bit. Again, we normally make dose adjustments for both children at the same time, so we still had no concrete answers as to why they were struggling more.
It took another day before I started to notice that their little coughs sounded more full than normal. Like they were starting to generate more mucus when they cleared a cough. Still really no fever, no visible mucus, just over all not great awareness, increased seizures, and now a more loaded cough. We agreed that it was time to start our normal increase on certain supplements, and their cinnamon, as when there is sickness in their already strained bodies, we have to increase support to help them navigate the new stressor.
A few, long days of around the clock care, shaker vest, supportive
oxygen, and increased supplementation of diet and we started to see an improvement of symptoms. We were getting close to the weekend and due to them both just starting to settle, we agreed that I would go to church and teach our Sunday school class, and Eric would keep D and V home out of precaution to give their bodies a few more days before we introduced them back into the world.
Come Monday/Tuesday we made a small dose change to their cinnamon ( I know you are asking why cinnamon but for our children, cinnamon replaces a very caustic chemical they have to take to navigate their metabolic disfunction. We were actually the ones to find the cinnamon and Drake the first to trial the cinnamon that allowed us to find a therapeutic dose - we now have a publication stating the effectiveness of cinnamon and NKH because of Drake’s work -https://pubmed.ncbi.nlm.nih.gov/32743799/). It takes about 24-48 hours to notice if the adjustment we made is working, or causing trouble, so we stay on high alert to monitor clinical symptoms.
Tuesday afternoon we noticed that Drake was struggling more, so we decided Wednesday morning (we never make changes at night as it is harder to watch them over night) we would adjust his dose back at his 6 am dose. Really we didn’t change the daily dose, just the dosing schedule, but whatever we did seemed to not be helping so we were going back to original schedule. Over the night, Eric got up with Drake and had to give him oxygen, as his seizures had increased quite a bit. I woke up to them both in the living room where Eric had made a make- shift hospital room with all the equipment pulled out of closest so we could support Drake to the best of our ability. I had a four hour test that morning I had to be at at 8 o’clock, so I quickly got things ready so Eric would have what he needed while I was gone, and out the door I had to run. One of our friends had been checking on Drake and Vivian and hearing that bubby was struggling that morning, she offered to come get our bigs and let them come swim and play for a few hours at her house. Being that Eric hadn’t slept much and I had the test to take, we agreed that would be a huge blessing to allow for Eric to only have to focus on Drake and Vivian.
I finished my test and came back to the house around 12:30 pm that day, and Eric had been working with Drake all morning. He said he had seen periods of calm for Drake, but that he still was not doing great. I can’t really explain what I felt but as I was looking at Drake I just kept telling Eric I just didn’t like the way he looked. For five and a half years now we have had to study every shift, every color change, every breathing pattern... anything and everything that could give us insight into their little bodies. I couldn’t say what I didn’t like, as he was presenting like his “normal” sick presentation, but something wasn’t sitting well in my soul.
After watching him for a few minutes and his oxygen dipping I just told Eric that I was calling EMS. Our oxygen only goes to a certain liter range, and honestly we can only supplement oxygen, we can’t make Drake and Vivian take a breath. When their seizures get this out of control and you add a virus to the mix, it is very touch and go on what we can navigate at home.
I called EMS and within minutes the fire department was at our door. They hooked his mask up to their oxygen and turned him to 15 liters of pure oxygen which brought his stats up to 95 quickly. His color even started to improve which was a huge relief. EMS workers came next, and we all discussed next steps. Because Drake was responding so well to the oxygen, they asked if we wanted to take him in or if they needed to just do a deep suctioning to help him clear any mucus that might have been blocking air flow. Again, I couldn’t tell them why I felt off about him, but that I did want to take him in just to have him evaluated.
We loaded him on the stretcher (per protocol), again, stats at 97 and heart rate sitting at 140. Eric agreed to ride in the EMS and I would stay home with Vivian. We know that Eric rides transport, and as soon as he gets the kids stable at the hospital, I come and take lead on care. Something about seeing my babies in the ambulance, rushing through traffic lights, with all the loud sirens creates a fear in me that makes me not be able to think clearly. I have to be be clear minded to help the medical staff know the children’s metabolic crisis especially when they are so fragile and sick.
Eric and Drake loaded up with all the medical team, and once I hugged Eric goodbye I could feel the tears burst forth. I walked inside and tired to collect myself quickly as crying does not help us. I have to turn my emotions off when things like this happen. If I start crying, it is hard to stop and I have to be able to think.... I have to be able to start getting supplies together. I had sent all Drake’s meds with him, and I was trying to quickly gather my notebooks and the things I would need for the hospital. I only had about 30 minutes to gather things and get Vivian ready to leave so that we could drive to the hospital and Eric and I could switch out so I could be with the team after all the transport had been handed off to the emergency room staff.
Eric called within a few minutes and I was talking to him while they were in transport. Eric kept saying, “Mama, he looks good. His color has cleared up and his stats look great. He has even opened his eyes and looking around. Babe, I think he just needed the higher oxygen.” Oh thank God... Thank you Lord. What a huge relief. It is so hard to know when they get this sick. What a blessing. As I am talking with Eric, I can hear him talking to Drake, “ Hey, buddy, gosh you look good. You even have your eyes open and they are so bright.”...........
Then.....all the sudden I hear someone say something in the background.....”I don’t have a pulse.....”
Eric asks what is going on...” What do you mean we don’t have a pulse? What happened? What does that mean?” Paramedic, “Sir, we lost his pulse...his heart suddenly stopped and we have to start chest compressions.”
The ambulance had to pull over to the side of the highway so the driver could jump in the back with the other paramedic and start bagging Drake while the other person continued to pump blood through his veins. All I can hear is a lot of commotion and Eric keeps saying on the phone, “Baby there is no pulse, Drake has no pulse."
I felt the breath leave my abdomen as my knees buckled underneath me. I felt the hard floor catch me as I sat on the kitchen floor beside Vivian. The tears came as fast as the breath filled my body, and I just started saying, “PRAY Eric....Pray Now." We both sobbed as we begged Father to give him breath again.
“Oh God....please God fill his lungs.....Please God start his heart."
- 5 mins go past....Still no pulse. More noise, more voices.
“Please God, PLEASE GOD...Please start his heart."
- 5 more minutes...Paramedic to Eric,”still nothing Dad”.
“Lord God....PLEASE....PLEASE don’t take him....Please Father start his heart."
- 5 more minutes...
”Sir, we are going to have to ask you to get out of the ambulance and ride with the fire transport to the hospital so that we can switch out people and allow the team to continue doing chest compressions. We need to get your son to the hospital."
Eric goes in the other vehicle while five people stand over Drake pumping blood through his veins and pushing air into his lungs. The ambulance closes up and gets back on the interstate in full push towards the hospital. Eric is rushed to the hospital separately.
-10 minutes pass...
Drake is unloaded from the ambulance and Eric finally can see him again. “How is he? Is he ok, do we have a pulse?"
“Still no pulse, sir."
There is noise, I can hear all the commotion and people. Eric is trying to explain to someone what happened and I can hear the paramedics giving details but I can’t make out what they are saying. I finally find words to speak, and I yell at Eric through the phone, “Daddy, tell them to shock him, why haven’t we shocked his heart yet?” Eric speaks to someone in the room, and says loudly, “Can we shock his heart?” I hear someone reply to him, and then Eric deflated answers me, “Momma, there is no rhythm to even shock....there has to be a rhythm and he doesn’t have one..."
Immediately we start praying again...”Father, breathe life into him, Father please... we know he is with you right now and ..... “ And then all the sudden our prayers changed...it was like there was this peace....and it hit us both....what if this was the vehicle that God was using to call our son home....what if it was time to let him go home....
So we both started praying together....
“Father, we know our boy is with you and we know he is safe....we know you will take care of him.....Oh God....Oh God....please take care of him....Father your will be done.....Your will be done..."
Eric is standing at Drake’s door praying as he couldn’t get to him through all the medical staff. The pastor from the hospital was standing beside him....I was balled up on the floor trying to breath...all we could do was sob and wait for someone to call it.....
The silence was numbing.....
Then...all the sudden there was a noise...”I have a pulse....it is faint, but we have a pulse!!"
"OH DEAR GOD”.....”Oh Dear God”....
I got myself out of the floor, I was shaking so hard I had a hard time dialing the numbers. I called a neighbor and asked her if she could take me and Vivian to the hospital. I didn’t trust myself to drive and I needed to get to the hospital right away.
We got to the hospital and there were three members of the patient care team waiting at the door to meet me and Vivian. On the way back to Drake the pastor found us and joined our brigade. We have learned that the more people the hospital brings to meet you, the worse the prognosis. I didn’t care....I just wanted to see my boy. We went down hallway after hallway trying to get to him. Door after door, and finally we got to his room, but they had already moved him upstairs to PICU. We got on the elevators and again hallway through hallway.
We came to the all too familiar PICU doors and in we went down yet another familiar hallway. We turned the corner and there was atleast 20 people standing outside his doorway. I saw Eric and immediately went to him. The hospital staff at the desk informed us that they couldn’t have siblings on the floor, so I quickly handed Vivian and all her medicines to
Eric as he took her back down the hall, and I took my place with Drake.
I was numb...I had stopped crying the moment I heard we had a pulse. It was not time to cry it was time to act. Crying could come later... I stayed through the night and into the next day... ever hour we were having pupal scans, every hour we were checking his epinephrine drip...every hour we were holding our breath as we watched him mechanically take his.....had a big IV coming from his right shin where the EMS had had to stick an IV in his bone to get quick access.
I was numb...I had stopped crying the moment I heard, "we have a pulse". It was not time to cry it was time to act. Crying could come later... I stayed through the night and into the next day... ever hour we were having pupal scans, every hour we were checking his epinephrine drip...every hour we were holding our breath as we watched him mechanically take his.....
A few days later our neonatologist and the entire team of experts sat us down...
"Statistically...Mom and Dad..."
"When a person is given 2 doses of epinephrine to start their heart back...it is 100% mortality rate."
Drake was given 7 shots of epinephrine.
"Statistically....”, the neonatologist went on to say...
"When a person is without a heartbeat for 6 minutes... it is 100% mortality rate."
Drake was without a heartbeat for almost 40 minutes.
"Statistically, take away any metabolic syndrome and just look at the events on Wednesday...your son has massive, insurmountable hurdles ahead of him....."
Drake should have never lived through the events that happened on Wednesday, and we still don’t fully understand what and why it happened. Every organ was damaged from the event...massive brain damage, and an EEG that was flat for 8 hours of recording....
Drake’s heart started beating after being lifeless for almost 40 minutes. His heart had fully recovered after only 8 hours after the event...with NO signs of damage. Everyday we have been at the hospital EVERY organ has come back on line and fully functioning...He was never supposed to be able to come off the ventalator....we extubated him on Tuesday, not even a week after his cardiac arrest. And he has soared since on his breathing. He is needing supplementing when his congestion gets heavy and he is weak trying to cough up the mucus.
His brain showed 75% of brain matter was impacted from the event....and that he may never wake up again.....
Yesterday.... he opened his eyes for the first time.....
I told the neonatologist, residences, child life specialist, infectious disease, neurology, and our metabolic team....
I don’t think you understand....this has always been Drake