- Tarah OSullivan
Thank you all so much for your prayers for Drake and our family. We think we are out of the valley and Drake’s seizures are starting to calm. He only had 10 all day yesterday and his awake times were so good. He is eating like a little champ right now and we can’t seem to keep enough milk in front of him….which makes this daddy and mommy feel so good to see him eat.
Eric and I have been on a bit of journey…..well lets face it…..Drake has been the journey of our lifetime thus far. When you have a child that is dealing with a fatal diagnosis, from the day they were born, every day is the fight of your life. There is no time to “do it again” and there are no “sick days”. I truly can not say how much we have prayed over these other NKH families and how much we have felt burdened for them when I see their children struggling…..just like I know they feel when I am asking for help and insight for Drake when he is on a low. These families have been one of God’s mercies because when you have a rare, genetic diagnosis and your child is 1 in 76,000…..the devil uses that to try to make you feel alone.
Drake’s seizures started about 4-5 days ago and they went from very controlled to out of control. He is now presenting in a new way that causes his stomach to contract so hard that it causes him to reflux, and because the seizure disrupts his brain he begins to choke or gag on his saliva or what may come up from his stomach. The fear of him aspirating is very real and we now have to roll him completely on his side and pray that we got him there in time. The only way to know if he has aspirated is a chest x-ray but if we do not catch it and the fluid gets too great in his lungs we will have no signs until it turns in to pneumonia…..which for a child this delicate….can be fatal.
When Drake was at the hospital and we had just found out his diagnosis of NKH, Eric and I knew that if the treatments were too aggressive and they would cause more harm than good we would not do them. When we found out this big horrible life ending disorder was maintained with a diet coke derivative and a cough syrup …we kind of were in shock. We never knew the monster was going to be controlling the seizures and the medicines they required. The medicines for the seizures are very aggressive and most of the time the children have to be on multiply medicines…..like at least 2 and at most 5ish…..and the medicines cause like a cocktail effect in the brain. There is no starting and stopping them….once introduced to one then Drake has to be weaned off or weaned into them because abruptly changing them can cause damage and more seizures. The seizure medicines have horrible side effects…..some children handle them well……some do not. Some children do well and the seizures are some what controlled …..but most have to constantly do a dance…..add a medicine….up the dose….add another medicine ……up its dose……add other medicine……possible remove the first medicine and try a different brand…..up those doses……it is exhausting and honestly there are few that can stay awake more than a few hours a day because the seizure medicines “suppress the brain or calm it”. And we as the parents we do whatever we can because THERE ARE NO OTHER OPTIONS for our children…….AND OUR CHILDREN ARE DYING. We have spent the last week researching the different “next step” seizure medicines for Drake…….the side effects just from simply google research keep me up at night.
I do not fear Drake dying…..I know Drake is going to heaven to live forever with the Lord and he will never hurt again…..He will be whole and healed and happy…..we will be able to talk with him and know him there just like we know our other children here………
our fear is what we will do to keep him here on this earth.
The past few days as Drake has been battling constant seizures and vomiting and fatigue we have been begging God to give us direction and clarity. We want so badly to give him “something” and make it all better……but God has really been speaking to us during such a struggle and He reminded us that this is not Drake’s final home. Our goal has always been since the day our children were born for them to know the Lord. And He has reminded us that that is all our focus needs to be again.
We are not going to start another seizure medicine…..we actually are going to start weaning Drake off some of the pharmaceutical meds and go strictly natural.
I will look at our beautiful boy when God chooses to take him home and know that I fought to give him life…….a life free from pain and a life that we can not imagine with his Heavenly Father.
We do not know what tomorrow looks like or the next. We know that God chose this path for Drake, and that He chose us to be his parents….and the convictions He has laid on our hearts.
Everyday is precious and we are not counting seconds during seizures or dying inside when we push meds into his little body anymore. I am looking at him now and we know we are fighting to give him life……we are living, we are living with an infant with a fatal disease and embracing every high and low until God calls him home.