- Tarah OSullivan
10-20, 8:45 pm Update on Drake Drake's oxygen is stabilizing. We thank you all for the prayers and texts and messages. I am sorry we have not been able to respond to all, but once again God has given us the strength and grace to get through a very tough situation with Drake.
This morning we woke to him having a hard time breathing. We got our pulse oximeter and his O2 was in the low 80’s. We have oxygen at home, so we had him at a full 5 liters (highest our unit goes) and he was barely hanging out in the low 90’s. He was extremely limp, and just overall very concerning. We called the neurologist on call and he agreed that we needed to bring him in, but we were all concerned about what his oxygen was going to do on the 30 minute ride and how Eric and I would manage him if he stopped breathing. The call was made to have the EMS transport him in to see why he was struggling to breathe.
The EMS men were very kind. There was one gentleman that kept speaking of how concerned he was about how Drake was presenting. I was trying my best to explain our disease, and how cruel it can be. To see Drake thriving and then to see how badly he suffers is pretty hard to explain. This morning these men got to see NKH when it lashes out. One gentlemen even said he had tried to research NKH online as they were on their way to us, because they had never heard of it, but there was so little information. They listened to us about medicines that Drake couldn’t have due to the disease, and how NKH has no real treatment, no government funding, and sadly because of this, no advancement have been made in patient treatment in 30 years.
I road with Drake so I could give the same information to the awaiting emergency doctors and nurses. Every time we shift hands we have to explain again, because Drake is at the mercy of the doctors, and without adequate research, the doctors are really left in a hard situation on how to care for Drake with all his medically fragile moving pieces.
The kids were all awake, and I was in such a hurry trying to get the phone calls made, packing Drake’s medicines, grabbing foods from the fridge that have to be given with those meds so he doesn’t throw them up…it hit me… the EMS are fixing to be here… with all their lights, and sirens, and medical equipment. They are going to come into our home, load Drake up and strap him down with all the wires… and Mommy and Daddy were going to have to go away to the hospital with their baby brother… Eric’s mother had stayed with us that night, so we knew we had them taken care of physically… but how scary it must be as a child to watch this unfold.
I grabbed my last medicine, and I quickly spun around and announced that “the amazing ambulance men (and/or women) were fixing to come to our home, and they were going to help us take Drakey to get checked out, and Mommy and Drakey were going to get to ride in the ambulance with the lights on!” They looked at me a little off, as you could see they were so unsure of why I was being so “cheery” when they knew something was wrong. By this time, EMS was in the cul de sac and they was no time.
Everything was so fast, and once we got to the hospital Eric said he walked back up to the house after we had left, and the girls had tears streaming down their face… they had held it together as long as they could. Trying to explain this disease to an adult is challenging… trying to help your children understand their baby brother is dying… that is job we pray daily God gives us words to help them process this season of their life.
We got to the emergency room, and their was a team waiting. They were very busy getting filled in from EMS and trying to come up with their own plan of action. Finding a vein for blood panels, and placing an IV. They tried once in his wrist and it didn’t produce enough. I spoke up and explained that I normally have to draw off his scalp… you should have seen the looks that one got. But they kept working and listening to me ramble about our disease and the “no” drugs, and the schedule. The temperature Drake had been fighting, and the extremely high glycine levels from Wednesday’s blood draw, that we just got back on Friday. Everyone again in the ER was extremely kind. Once they realized I meant no harm, just trying to help explain Drake, because there is so little known about NKH, they all kindly smiled and nodded as they worked. They got all the labs and tubes filled for cultures, and blood for glycine levels. Drake had to be put on 14 liters of oxygen to keep him in the high 90’s, so we knew this was the place he needed to be.
Some of the blood panels have come back and Drake has two viruses. Rhino Virus (common household cold) and Parainfluenza 3 (a strain of the flu but not the normal (this one causes more upper respiratory stress). We also know that when Drake’s body is fighting any kind of sickness, it causes him to produce more glycine in an effort to heal faster. So if his labs from Wednesday were already up over 600.. there is no telling how high he currently is. We won’t know blood glycine levels from this mornings blood draw until tomorrow, at earliest. This is with the on-call lab technician, in Greenwood, working emergency hours.
As I road with the EMS, and watched him working over Drake.. the sirens going and all the visuals of our baby boy laying there, lifeless and struggling to breathe….it was numbing.
The EMS had to draw his blood sugar to see if it was low. One of the many first responding procedures to have him ready for the handoff at the ER. He took a tiny needle, pricked his heal, squeezed a minute amount of blood and applied it to a unit that was no bigger than his palm… and within seconds we had a reading of his glucose level. I fought back the tears because as I watched this …all I could think in my mind, was my goodness… we could avoid all this… all the seizures, all the lack of oxygen, the ambulance ride, the fear in my girls eyes, the panic as we are watching the oxygen levels not come up… if we just had a way to test Drake’s glycine …just like that glucose meter. We would be able to adjust his medicines as his glycine climbed and he would have been able to fight the virus like any normal 2 year old chid… we could monitor him more closely, and yes we would have to prick his heal more often… but we could be at home with our children tonight, instead of a hospital room waiting for lab result so we can adjust a glycine level that is currently keeping his brain so sedated it is compromising his breathing.
I know I ask a lot… but please… if you haven’t donated before.. donate. We need massive funding to accomplish what is needed to get Drake help. If you know someone in the medical device area… ask if we can speak with them. We are going to have to have funding first to get a manufacture to produce a unit, but these units can very much be made.
There is a need…. Drake NEEDS a way to measure his glycine…. Drake deserves to get sick like a normal child… soup and a cool rag… extra snuggle on the couch with Dad. Not ER, ambulance rides, and days of admission because “there isn’t enough children to require these machines be made”.
We need your help to give Drake a voice…