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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Mailing Address:

2607 Woodruff Road,

Suite E, PMB 352

Simpsonville, South Carolina

United States, 29681

July 1, 2019

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Day Four at the Hospital

October 24, 2018

  

Drake had a good day yesterday. Sorry we didn’t write, as our day was full. It was right around 1 am before we got settled enough to try to sleep for a few hours, before our 5 am medicines. Right now, Drake’s temperature looks to have broken. Last night around 9:00 pm, his temp started to creep up just a bit to 101.3, so we gave him some Motrin to sleep. We are doing shaker vest treatments three to four times a day making sure nothing settles, and builds in his lungs. He seems to be clearing mucus much better now when he coughs so that is a HUGE praise. 

 

Our oxygen is doing so much better, we are actually trying to ween him off today for periods of times to see how well he is holding his O2. Right now he is only dropping to high 80’s when he sleeps. We do have oxygen at home, so we are hoping that with his progress, and what we have at home, we can talk of leaving the hospital. 

We are having a suction machine, and talks of a shaker vest, delivered today so the doctors feel more comfortable with us treating him at home. We truly have a small hospital now ( instead of a

 

nursery ) but we will do whatever we have to, to keep Drake out of the hospital and at home with our other littles. 

 

Our glycine levels are starting to come in from the weekend blood draws, and our levels are coming down very quickly. We are all trying to get blood everyday to monitor this as closely as we can, so his glycine level does not get too low. If there isn’t enough glycine in his blood for the “medicine aka sodium benzoate” to cling to, the sodium benzoate can start attacking his organs. And with Drake being so weak already from the two viruses, it would be too much for him right now to handle.

We are getting some labs back that says his nutrition is starting to suffer a bit from the sickness and the thr

 

owing up. So last night I went home to see the kids and packed a car load of fresh veggies, plant based protein powder, and made a make shift kitchen in our room. I sterilized my area, washed everything and got the juicer and Vitamix going. Anything we can do to help boost his little body, we are trying right now. 

 

Drake woke last night about 12:30 am with a burst of energy. Eric and I laughed because, of course, we were ready to go to sleep, and Drake has been sleeping for days, so he was ready to get up and visit. We stayed up and enjoyed him even though our eyes were crossing a bit, it was nice to see him looking around and fighting to see our room and explore his surroundings. Drake has slept on Eric’s chest every night so we could monitor him as closely as possible, and also keep him upright. It is not the most comfortable for Eric, especially with all the cords, and going on day five, but we have to be very quick to respond if Drake has a seizure, or gets choked on his congestion. At any time, Drake can get gagged and trigger him throwing up and we have to be able to clear his airways as quickly as possible. 

 

Thank you all for your continued prayers, we are so thankful he is starting to pull through this and the real possibility of bring him home is very close. Please pray for his glycine level to stay above a dangerous low, pray for wisdom for our doctors and ourselves as we adjust his medicine to track his glycine levels, and please continue to pray for Drake’s healing as his first real sickness was a doozy, and we still have a few weeks of extensive home care to clear him of it. 

We love you all and can’t thank you enough for your prayers. God has continued to reveal His steps for our son and brought us so much encouragement even from our hospital room. 

 

Will update when we are able to go home.

 

Love, 
Eric, Tarah, littles and Drake

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