The Drake Rayden Foundation, was founded by Eric and Tarah O'Sullivan, to bring hope through the gospel, raise awareness and funds for better treatment for Drake, and all children, affected by NKH. 

© 2017 by Drake Rayden Foundation.

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2607 Woodruff Road,

Suite E, PMB 352

Simpsonville, South Carolina

United States, 29681

July 1, 2019

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Round Two - Second Hospitalization in a Week

October 28, 2018

 

 

 

We had to admit Drake to the hospital again last night due to his white count being very elevated on Saturday when we took him into the pediatrician.  Drake had been healing really well, and we were very excited to get to take him home last Wednesday.  The kids have been so precious and we were so thankful to have us all together at home.  

 

On Saturday morning, Eric took Drake’s temperature first thing, and it read 102 rectally.  We both hoped it was a fluke….maybe we had him too bundled up, or maybe he was just warm from seizing so much the past 48 hours.  Drake’s glycine jumped up right when we left the hospital, so we knew the relentless seizures were coming.  We got a second temperature and it was lower…but still 101… so I made the call and spoke with our PEDS office.  Our doctor wanted us to bring Drake in to get checked.

We went to his office and they drew blood, and took an X-ray of his chest.  Pneumonia is always such a fear with Drake because of his low muscle tone, and the constant monitoring of aspiration.  The Xray came back that he had slight darkening, or thickening, around his bronchial tubes which was newer, but not a huge shock.  It took us three days to get the shaker vest delivered to our house, so Drake had to go without treatments for a few days, which could have very well caused the build up.  His ears have fluid, but did not look severely inflamed, which is a blessing considering the virus and all that he has been fighting.  But then the white count came in and it had went from 8,000 to 32,000.  We knew by the look on our doctors face when he came back in…. he was very kind, and you could see how much he didn’t want to make the call… but he said, since Drake’s little body was so tired, and using his reserves already, we couldn’t chance it… 

 

Birkley was with us in the room, dressed in her little cheer uniform.  Eric had come with us to take Drake home right after.  I was going to run, just for a few hours, and coach her last game of the season once we left the doctor.  As soon as we heard the final verdict, I felt the tears swelling in my eyes as all the fear of another hospital admission or what that white count meant was brewing….. I didn’t want Birkley to be scared, so I pushed past the cracking in my voice, and asked all the necessary questions to find out what was needed to get Drake checked back in to GHS.  We left the doctors, I phoned friends to find a sub for the game, a

 

nd took Birkley home so I could run to the grocery store.  I had to make sure we had enough food and veggie/fruit juice made for Drake to at least feed him his normal nutrient packed diet for the next few days in the hospital.  We have to have everything made and ready as we can, because it is very difficult to make his food in the hospital.  Birkley was such a big girl, I apologized for her having to miss her last game, but she was so sweet and said she understood Drake was more important.

 

I got home, we gathered bags and a cooler of Drake’s foods packed and prepared.  Grabbed a change of clothes, and all of Drake’s medicines.  We called the kids in before we left the house to pray as a family.  The spiritual battle we face with Drake is just as important as the physical battle.  We all laid hands on Drake, put oil on his head, and prayed for God to give us strength as a family, and bring healing to Drake’s little body.  We kissed our babies goodbye one last time, and Eric and I drove to the hospital.  We arrived in the parking lot and I asked Eric to pray with me again.  I knew another admission would mean more blood from already bruised little limbs, more IV placements from veins that are already so blown, more doctors to try to explain our disease that many have never heard of it before, more residences that hear the word “seizure” and “lethargic toddler”, and want to treat seizures aggressively, and we have to explain the current seizure medicines on the market do not target glycine……and more needing to make vital decisions, but constantly waiting for labs to return…..

 

 

We were tired…. drained from the week before.. and the weight of another hospital admission was heavy… we prayed, took a deep breath, and opened the car door.  A friend had texted earlier and said “God is with you, and He has already gone before you”….  and those words kept playing over and over in my head as we walked Drake back into the hospital for another round.  

 

And she was right…. God had already been there, and He had ALL the details taken care of…. the doctor from last week had met and totally filled in the next round of doctors about Drake and what he had been through last week so they were ready.  Our resident from last week, was in our room within minutes saying how much she was so sorry Drake

 

had to come back, but they were going to do everything they could to get him feeling better.  Even our precious nurse that had cared for Drake numerous days last week, and actually discharged us Wednesday, was at the nurses’ station and when she saw us she said, “I have been waiting on my sweet boy, I wound’t leave until I got him settled in and the night nurse briefed on him”.  The blood draws and the IV went the same way.  God continued to bring precious nurses into our room, up until about 1 am, gettin all the labs and leads, and lines placed on Drake.  

 

We got Drake settled and made our bed to try to sleep a few hours around 1:30 am.  Respiratory was coming back at 4:00 am to do a shaker vest treatment to help him move some build up.  Eric and I sat and prayed, just thanking God for going before us.  We were very disheartened to have to come back to the hospital, and to see the decline in Drake, but what encouragement God brought to remind us the moment we walked through the doors, that He was right there and had already made a way for our boy.

 

Thank you for continuing to pray for Drake.  We will update as the day goes with his progress as we are still waiting on a few cultures to come back.  We have started him on an IV antibiotics due to the elevated white blood count, congestion, and inflammatory markers being elevated as well.  If it has now gone bacterial we have to get ahead of it due to Drake’s weak state.  He is sleeping and we think the glycine is coming more back in range from an adjustment we made to his meds three days ago.  Sleep is so good for his little body.  

 

We love you, and we are thanking God for His provisions and strength.

To God be the Glory,

 

All of love, 

Eric, Tarah, littles, and Drake

 

 

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