- Tarah OSullivan
Talks of Coming Home
Drake had a good night. He is very weak, but that is to be expected considering all he has been through. The labs are all coming back in and all are showing pretty good. We brought Drake into his PEDS doctor due to his fever getting back up on Saturday, and while there we learned his white count had gone from 8,000 to 32,000. These two factors, coupled with the fatigue Drake's body was already dealing with, is why our Pediatrician felt we needed to readmit Drake to the hospital for further care.
We have been giving Drake an IV antibiotic to target bacteria that could possibly be in his nasal passage and chest area, and also waiting for blood cultures to have time to grow in the lab. We received the first 24 hour check last night and it is showing there is no bacteria growth at this time. The next check will be at 48 hours, and then a final at 72 hours.
Drake, over all is doing well. He is doing really well, seizures have calmed quite a bit, back to our normal 8-15 a day. He is gaining more awareness each day, as strength is going to have to come with time. Our goal for the next 6 weeks is just to keep the congestion moving and rebuild his weak little body.
We have been speaking with our Neurologist, the same neurologist that has over-seen Drake's care since he diagnosed him in PICU at 2 weeks old. He is also the neurologist that has helped us navigate the cinnamon treatment for Drake. To say we are partial to him is an understatement. He just knows Drake....very close to like we know Drake. And God just happened to have him on call this week and weekend so we would have that comfort, a God of details He is for sure. Dr. Babcock comes by everyday in the afternoon to talk with us about Drake, and we are starting to talk through the possibility that the high white count could be from all the seizures Drake has been experiencing due to his glycine getting elevated when we left the hospital last week. When Drake's glycine gets too high, he seizes every 10 minutes for 48-36 hours. This happens as we wait for labs, then we make adjustments to his "medicine" to try to get his glycine level to come down. Once his glycine gets in range, he normally has to sleep for about two days to be able to recoup from all the seizures he has experienced. We left the hospital last Wednesday, and he started seizing a lot on Thursday, we got blood Thursday night and sent it to the lab first thing Friday morning. They rushed it for us and levels came back in the 500's.
Drake needs to be around 350 to low 400's to be in a good place on his glycine. Due to the lack of funding for NKH, the proper meters to measure glycine at home do not exist yet, and that makes it extremely difficult to have glycine measured. We have learned to study very closely Drake's seizure activity, as it gives us some insight into what his body is experiencing while we wait for labs. We adjusted his "medicine" Thursday night after the blood draw, because we thought, using our knowledge of Drake, that his glycine was too high again. We have to make the best "guess" we can, pray we are correct, and adjust our medicine up or down in a constant effort to shorten the time Drake suffers as we wait for labs. This time... we "guessed" right, and from our adjustment on Thursday night, his body and seizures started to settle on Saturday night. That is the other side of this vicious cycle... even with all our efforts to know where his glycine levels are, it takes a human body around two to three days for amino acids to adjust to any change. Can you imagine the hamster wheel we are always running on?
But what do you do... what do you do when your child's life depends on it?
.... You persevere....
We were able to get ahead of Drake's elevated glycine level this time, but the effects of all the glycine brewing in his brain and the days of seizing was not avoided. Our neurologist was discussing with us that there are studies that show seizures can elevate white blood count, but it is more related to convulsive seizures, and he just thought it was hard to believe his white count be that elevated from seizures alone.... sadly, I can see how it might be. To watch Drake, during his days of seizing and the extreme toil it takes on his body...you can only imagine what the effects are....the white count just gives us another image of what damage it is causing. We pray that God's grace blocks the suffering Drake experiences when we are in these valleys....
What we have learned from our second hospitalization is confusing.... but we have to take everything we learn and store it, as God will use it later to continue to bring understanding of Drake's body and how it functions. Everything about Drake is like taking pieces to a puzzle, putting them together blindfolded, and trying to make sense of the image while learning to read braille. That is also why it is imperative that Eric and I keep massive journals about Drake. We can't possibly expect a new doctor to be able to know all the facets to Drake, because there is very little knowledge of NKH in the medical world. Most doctors we meet have never even heard of NKH, much less met a patient with it. Even if they tried to review his extensive medical records (which could take months)...none of our information would make sense to someone who hasn't had a history with Drake. Our two closets doctors, a Neurologist and a Geneticists, that have followed Drake from birth, take their medical background paired with our knowledge learned from meeting all three NKH researchers in the world, and together we find ourselves scratching our heads most days, trying to make sense of labs and how they play into Drake's care.
Eric and I have no medical background prior to Drake. Eric is highly trained in the financial world, I was pursuing a business degree when I felt God call me to put that down, and follow His call to put all my energy into being a wife and a mother. But, we have also spent the past 24 months on our knees begging Him for heavenly wisdom on Drake's body, and how to care for him. We know Drake, we may not have all the answers about his disease... or how to calm all the chaos in his little broken body yet....but we know our son... because God knows Him, and He promises to give knowledge to those who earnestly seek for it.
We are awaiting our team of doctors to round so we can discuss discharging us today. With our labs coming back normal and negative growth on the bacteria... we hope there will not be a need to be hospitalized, and we can manage Drake from home.
Please continue to pray for wisdom for Eric, myself, and our doctors. Please pray for God to open a door that will blow this disease off the map.... because He can. Also, please thank Him for walking with us and giving us strength. Your prayers have been felt, and we have seen His hands in all the details which is so comforting. He is always there.....we just have to have eyes that see Him working. Pray that the devil will have no influence over our heavenly vision while we are wagging this earthly battle.
We will update as we know more.
All our love,
Eric, Tarah, littles, and Drake
"If any of you lacks wisdom, let him ask God, who gives generously to all without reproach, and it will be given him. But let him ask in faith, with no doubting, for the one who doubts is like a wave of the sea that is driven and tossed by the wind."