After weeks of Jake still crying and crying and still having no answers we walked into neurology saying “something is wrong with our son he needs help, I will not leave here until I see someone today, I don’t care how long it takes he needs help right now!” Waiting in a pediatric neurology waiting room was a huge shock for us, seeing for the first time what kids can live with was a shocker. Is this the road we are going down? Would this be the course for Jake as well? Everything usually turns out ok we just needed to find out what was wrong and then we would do whatever is necessary to fix it! We were so naïve to the medical world we have never had any other family members with any major or even minor problems for that matter that required a doctor’s attention. We soon learned the hard way what things could be done to an infant body. Sometimes not being able to talk and tell everyone around you what you are feeling and medical testing needing to be done immediately, the only communication a baby has is crying which usually just gets dismissed but I could feel Jake’s pain deep in my soul. That day it was decided to get more information we needed CFS fluid and the only way to do this is a Lumbar Puncture. What that means is sticking a needle in Jake’s spine and pulling out fluid next to the spinal cord without getting any blood in it. We were horrified, and to make matters worse Joel needed to force Jake into a U shape and had to be held there so he could not move. I grabbed Jake's fingers and squeezed as the test began Jake would scream and squeeze back as our tears combined I begged them to hurry. The fluid was retrieved and I thought all was well; I picked up Jake and held him close to comfort him. I was thinking what a horrible procedure I am glad Jake will never have to go through that again. How could we have known what every 24 hours will bring? Within a few weeks the test was incomplete and they needed more fluid to do the study I could not believe what I was hearing Jake had to go through that whole process again? The arrangements were made and Jake was positioned as all I could do was hold his hand and tell him I was so sorry, how I wished I could have traded him places. This time with all the doctors best efforts they could not get a clean sample and after 5 consecutive needles being inserted into his spine and over 10 pokes I demanded they stop nothing could be worth that Jake was done and my voice was the only one he had. I scooped him up and rocked him until from exhaustion from crying and the left over pain and headache from the test he fell asleep. We left the hospital again wondering what was next and how much could his little body take.
It seemed like there was never any good news for Jake so all that could be done were more tests. More arrangements were made for a new test to see if Jake had the disease SMA. For this test Jake had to undergo an EMG test where it measured the electrical activity of a muscle. In this procedure needles were inserted into his muscles and left there to get a reading, I couldn’t believe what I was seeing! When Jake would cry I couldn’t stand it and wanted to pull everything off of him. He also received his first MRI and had to have multiply unconscious sedation's. As his overall condition continued to get weaker and weaker and with no new information it was a risk every time he was sedated to see if his body could rebound. Never before have I been so shocked and surprised as I kept learning the hard way for Jake what had to be done. I used to cry when my babies had to get the PKU test and have their little fingers and heels poked. How I learned what we all take for granted a healthy baby that gets to go home with no problems and have the gift of normalcy in life. It is hard to learn to live with this reality, I was starting to think what would happen if we did not find that normalcy. I would always think everyday things could not get worse but then somehow they always did.
We had to learn a new way of feeding Jake he would try so hard to suck but it took too much coordination and energy for his brain to organize the 36 muscles it takes to suck, breath, and swallow all at the same time. It was becoming impossible for Jake’s body to do simple instincts that all babies are born with. I learned how to pump breast milk and put into syringes with a machine to deliver his food through his nose by a tube. I would do anything to keep him healthy and growing. We had to change syringes every 2 hours 24 hours a day so Joel would help at night taking shifts so one of us could have 3 hours of sleep at a time. We worked to require all of the special equipment at home that they had at the hospital like deep suctioning machine, oxygen and feeding machines. I would not give up and still tried to give him a bottle to see if he could remember how, we tried the Haberman Feeding System (now renamed Special Needs Feeder) and even went to IFA and bought a baby animal nipple to suck that should have been easier for him to use, but nothing seemed to work.
Jake ended up in the hospital again his health declining trying to just do the most basic human functions were seeming to be impossible for Jake. I will always remember the day that Grandma and Grandpa came to visit Jake, right when you open the door to Jake's room it is clear how fragile the life of this little boy is getting. Your mind begins to wander of what is going to happen, how is this going to turn out? We have always held out for the best and had hope. But the tubes and crying and doctors and tests bring you into a new reality that we never knew of. Joel started to fill in the new information to grandpa as they walked out to the window tears streaming down both their faces as they talked about the trailers in the parking lot, anything to ease the pain of what reality we were being faced with.
Jake made it through yet another hospital stay and again we returned home to our crazy schedule, but I would have rather been at home as a whole family then have Jake and I in the hospital. I did not want any moment go by that I could be holding him or just to be right by his side.
Regardless of our best efforts in doing all we could to keep Jake healthy, he found himself in the hospital again. This time it was decided that Jake needed to have a sleep study done. Even though we were all ready in the hospital he needed to go to the RTU (rapid treatment unit) where this test was done and took overnight to complete. I thought how bad could it be it is a sleep study that sounds harmless oh how wrong I was!
I marvel at how in our darkest hours our Heavenly Father blesses us with what we need to endure all we must. I believe there are angels among us in spirit and in person that night Jake had six angels with him to help us. Three that as a chosen career serve children daily with love and kindness and three spirits that were sent to help when we had done all we could and it was not enough. I know there are angels among us! Jake woke up only minutes after the required number of hours they needed for the test results. It was a miracle- but he did it!
This was our new family’s theme song, everyone memorized it.
Angels Among Us
I was walking home from school on a cold winter's day
Took a shortcut through the woods and I lost my way
It was getting late and I was scared and alone
Then a kind old man took my hand and led me home
Mama couldn't see him, but he was standing there
And I knew in my heart, he was the answer to my prayers
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
When life dealt troubled times and had me down on my knees
There's always been someone there to come along and comfort me
A kind word from a stranger to lend a helping hand
A phone call from a friend just to say I understand
Ain't it kind of funny at the dark end of the road
Someone lights the way with just a single ray of hope
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
They wear so many faces
Show up in the strangest places
Grace us with their mercy
In our time of need
Oh I believe there are angels among us
Sent down to us from somewhere up above
They come to you and me in our darkest hours
To show us how to live
To teach us how to give
To guide us with a light of love
There have always been so many angels among us, a kind friend who called at the just the right time, my sisters who always sense I am in need and show up at my doorstep with just what I needed, sometimes even before I know I need it. Loving grandparents and parents who are constantly there and suffering themselves from watching not only their grandchild suffer but their child, how they wish they could remove this trial from us both. Being part of a ward family that gives non-stop service with meals and any help possible.
Yes, I have been blessed more than most to have had wonderful experiences in my life that strengthen me and give me the boost I need every day to continue on. I have had heavenly messengers sent to me countless times, I might not have always been in the right frame of mind to hear them but oh how I have felt them and been loved and comforted when it was not possible for earthly hands to help.
Yes I know for a surety that there are angels on earth and angels sent to earth to help us through our troubles times from our loving Heavenly Father.
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