Tuesday, April 17, 2018

Hard Work

                 I am writing this post not for sympathy for Jacob or I but for awareness.

   I have many friends and family that aren't aware of all the health issues Jacob has had all his life so
hopefully this will help people understand we aren't "making excuses". Jacob is my youngest son and
the only one I carried full term so his delivery was different than my other two, a C-Section. He weighed almost 10 lbs. was healthy and I got to bring him home when I was discharged unlike my other two. I noticed the slam bamming of my two oldest wasn't startling him and I was getting concerned so when the nurse came to check on him I told her my concern. She did several "sound"test and got no response from him. We have an awesome pediatric team that listened to my concerns and sent him to an audiologist. After several visits and various hearing test I was told he had significant hearing loss. So Jacob got his first hearing aides before his first birthday. While all the hearing testing was going on I kept saying his head was big and a friend said that was normal because I had him by C-Section but again our pediatrician noticed his head measurements were increasing so we saw the neurologist. After a Cat scan I was told he had Hydrocephalus (water on the brain) and was going to need brain surgery. There were two options, laser to try and open a hole for the fluid to drain off ,which if it worked had less complications or place a shunt (which drained the fluid into his stomach to be absorbed) in his head .The complications with placing a shunt are it could stop working at some point and have to be replaced, infection at the surgical site,  shunt infection and seizures. Hearing all the complications we opted for the laser praying that would be the only brain surgery he'd need. So at seven months I handed my baby over to the surgeon praying that my baby would be ok. The surgery went well and we had to wait now to see  what would happen.Up to this point I still didn't know much about the effects of Hydrocephalous and now I can admit I was in denial that Jacob would have any problems because of Hydrocephalous or the hearing loss.
    After waiting for three months to see if the surgery helped Jacob I was given the news it hadn't helped so a shunt was needed which meant another brain surgery. A programmable shunt was placed which meant the doctor could change the opening/closing to control the amount of fluid was being drained without doing more surgery. Everything was leveling out with Jacob so I could breath and we began speech therapy, occupational therapy and sign language. After talking to many therapist and counselors I decided to mainstream Jacob. For those who don't know what that means basically he would be treated as a normal child. I didn't want him to use his hearing or Hydro as an excuse not to do thing, plus yes I was still in denial. As he transitioned into daycare his therapist would come to him. We stopped with the sign language,which I am kicking myself  now for not keeping it up and Jacob has lost significant hearing in the past two years. When he takes his hearing aides out he doesn't hear anything. That makes it kinda scary for him and I to be honest. He's been accepted to receive a "hearing" service dog and is on the waiting list.
    So life seemed to be going well for Jacob and then in the summer he was going into first grade he started stiffening up and dazing off only for a few minutes but one day I took him to his grandmother and before I could get to the end of the road she called to say we needed to take him to the hospital.Jacob had his first ambulance ride that evening up the mountain to the hospital where his neurosurgeon was. After checking everything out with Jacob the doctor said it looked like the shunt was good but he could go in and check for possible blockages not showing up on scans. Scared for my baby and at the hospital alone I chose that option. Brain surgery number 3 was done and everything looked normal so Jacob was sent to I.C.U. since we still had no answers. I saw the neurologist and the next few days after many test I was told he had Epilepsy. My heart dropped because the only thing I knew was seizures could be dangerous if not controlled. Another journey we would have to go on and learn along the way. I had to change some of our eating/drinking habits to help Jacob become seizure free (No Caffeine including chocolate or artificial sweeteners).
    Still in denial about the effects of Hydro we went on about life as normal as possible. He wanted to play baseball and I asked the doctor about it and his response,"As long as he wears a helmet through the whole game". Nope I wasn't going to have him stand out from everyone else so no baseball. He did play basketball on an Upward team at church till he aged out then he tried a rec team one year and didn't like it.
    I decided to homeschool him starting in middle school because even though the teachers would sit him up front when they turned and he couldn't see their lips he wasn't hearing them. He had become a great lip reader. I still in denial about him having defiencies due to his Hydro would get discouraged and felt like maybe I wasn't doing something right. But when we did his yearly testing he was getting it. Health wise he was doing well,life was good.
   One day Jacob told me when he turned his head he could feel "buzzing" in his head. Concerned but not wanting him to see how scared I was I calmly started researching Hydrocephalous and asking him many questions. I called his neurosurgeon and they were able to see him within a couple days but explained we could take him to the E.R. Jacob said it wasn't bad enough for E.R. so  we took the appointment. At the office they ran a shunt series which is a series of x-rays to check the whole system. Jacob's shunt is on the right side of his head with the tubing running behind his ear,down his neck and chest with it ending in his stomach. After the series was completed and reviewed by the doctor we got the news we didn't want to hear.....tubing had come loose from the shunt and not sure how long it had been disconnected. This explained Jacob's memory loss,staggering and several other thing I blew off as being a teenager. He was going to have brain surgery number 4 and reality slapped me in my face. Feeling helpless I turned to the internet for answers. My church family wasn't aware of Jacob having a shunt because of my denial and wanting him treated "normal". We received this news on a Wednesday and the youth were having a pool party. Jacob had to miss it because of hospital registration and he chose to wait until Saturday when his doctor could do the surgery. I worried,prayed,watched him like a hawk, prayed and researched for the next few days. Surgery went well and they were able to just reattach the tubing but if it came loose again the whole system would have to be replaced.
   Shunt taken care of now back to the hearing.....significant sudden loss of hearing when Jacob was 16. Audiologist and ENT very concerned recommended getting his shunt checked out. Shunt checked with no problems so now hearing is really bad even with the hearing aides. When Jacob takes aides out he hears NOTHING which can be scary. I have been surprised how many people don't know Jacob wears hearing aides but that just shows how much hard work has been put in by him with speech therapy. So when Jacob doesn't answer you or just smiles and nods his head he's not being disrespectful he probably didn't hears you or couldn't read your lips.
   Upon multiple testing we have discovered that he can comprehend a little better if something is read to him versus him reading it. He can't be given multiple command ( take the trash out, feed the dogs and do your laundry). He can't remember too many thing before his last brain surgery which is sad because there's many great ones. These aren't excuses that are made for him they are documented by several doctors. He and I have learned a lot about Hydro and try to share anytime we can. We will be learning sign language now since the hearing is failing but we know the God's got this and we're strong in our faith. A hearing service dog is in his future too.
   Sorry for the length but I felt the need to share. God bless and have a great day.

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