Jake made it through that night and eventually stabilized enough that we decided to go home. Jake did so much better at home in his comfort zone surrounded by family that loved and adored him. He seemed to know when he was home with his siblings and safe from pokes and tests. We enjoyed every day we have to spend together, and learned not take anything for granted. Being able to have a family meal together, giving everyone baths and tuck them into bed to be able and sit and watch a video and not having to live on cafeteria food. We were always so grateful for the time we were able to be home together.
Unfortunately life always found us and reality would hit us hard. Jake started deteriorating again crying 14 hours a day. He would cry so hard his body went stiff as a board and then eventually due to pain and screaming he would arch into a U shape where his head would reach his feet. We talked to everyone we could, tried everything possible and still no results. Finally when talking to one of our doctors it was recommended we try a new medication out of desperation we agreed. It was wonderful! We thought we had received a miracle! Jake seemed to calm down and not be so tight I could hold him as a normal little baby he snuggled right into me. For the next 48 hours we thought we solved Jake’s problem and everything was great! Oh how wrong we were- although we loved the 48 hours we had and our hearts burned with joy because for a moment we felt what it was like to be normal and had hope that with one little pill everything could be as it should. Because Jake was doing better Joel took the other kids out for some fun while I stayed home with Jake, when I realized he was not doing well and needed immediate attention I called Joel to come home quickly I knew Jake had to be taken to the hospital. As I hung up the phone I threw it smashing the phone on the wall wondering what now! As Joel returned home and the grandparents came to once again take care of my kids as we rushed to the hospital the freeway parted and miraculously the cars left our path we made it in record time. Jake was immediately admitted to the PICU (Primary’s Intensive Care Unit) and being almost 3 months old could no longer breathe.
As he was rushed in and swarmed by doctors that tried to push me away I said no! I never leave Jake what ever is to happen I will be by his side. He was intubated and put on a ventilator that was breathing for him and given drugs to knock him out and not move. This was most difficult of all because for the first time I could not scoop him up and hold him or rock him to sleep because of the tubing going down his throat to automatically operate his lungs. He was hooked up to countless monitors that gave the doctors the information they needed to keep him alive. His body was so weak and fragile, there were so many doctors none of them sure what was wrong or how to proceed. So we started treating his symptoms to try and keep his basic body functions working.
At this time there was little hope given to us, “He will probably not have the strength to come off the ventilator and breath on his own ever again, he was not even expected to make it out of the hospital alive.” What piercing words those were, we had just had a glimpse of how happy life can be and so hopeful for the future. We wanted so badly to have our 4 children and just be able to raise them. I still never left Jake’s side and became very proactive for Jake I needed to sense what he needed and somehow communicate for him, I was the only voice he had. I made sure only the necessary tests were done on him, I tried to only have one blood draw a day instead of whenever a different test that required blood was ordered. His little veins became scarred, bruised and collapsed from so many pokes; he had no fingers left that did not have band aids on them from pokes and scars. Looking at his little body bruised, bleeding, poked, not able to breathe or swallow.
I changed forever at that moment as something inside me stirred and my blood began to boil as I was driven to new lengths and had no fear of offending anyone and I was given a strength to protect my son for as long as I would have him. I became known as the “psycho anal mom that was next to Jake’s name on his medical chart” watch out for her. I demanded to know how and why things were being done instead of just watching I learned how to do all of the procedures that Jake needed for survival. I would watch the nurses and ask each one of them to teach me everything they were doing then I would do it my self to Jake. I had such a desire to soften all that Jake had to endure. The least I could do was try to protect him, try to make it easier for him to bear and to do everything for him softer and gentler. If he had to go through all of this I could hold his hand and give him constant love and support to always make sure he knows I am always right next to him. One of these times as I was holding his hand and he was squeezing my finger tears were rolling out of his eyes his mouth was opening and closing he was screaming but you could not hear any sound because of the tubing down his throat attached to his breathing machine.
My heart and soul ached so much how painful it is to have to sit by and watch your child suffer, how many times I would pray and beg Heavenly Father to please heal him and take me instead, how I would have done anything, anything at all to try and trade him places. As I looked inside his eyes and was trying to truly sense what it was Jake wanted, I asked him what should I do? How should we proceed? I know you are suffering Jake please let me know how to make these awful decisions for you. As our spirits connected once again, as we were looking into each others eyes, I know Jake was trying to communicate with me. I made a promise to Jake that if he could get enough strength I would take him off this ventilator and I would never allow him to be ventilated again. I felt his answer so strong he did not want to be here all that he was going through was more for me rather than for him. Even if I lost him I promised right then and there life would be better. Somehow he told me “mom give me a chance,” we did take the leap of a faith and had the machine turned off and Jake began to breathe on his own.
Although it was a huge success there were still many obstacles ahead the hardest decisions were yet to come for the next few days we were trying to decide what to do for Jake. We have learned lessons that everything you do has its positive's and negative's affects to the body, you might fix one thing and two things get worse. We broke it down that Jake has to breathe, his heart has to beat and his body needs nourishment. If we could focus on these things try to get him stronger we would go from there. With that in mind Jake went in for his first surgery and had a little flap of skin removed to try and open up his airways (tracheomalacia) it seemed to work for the time and we were grateful for his kind surgeons who worked so gently on Jake. We were successful in getting an MRI that showed Jake’s brain did not have the myelin sheaths that it should to properly communicate with the rest of his body so his brain was extremely delayed for where he should be. It was quite the controversy of opinions on having a trachea placed, technically to make sure he could breath he needed it, but on the other side was it medically correct to prolong his life. For us it was incredibly difficult to watch our child struggling for each breath and you want to just take big deep breaths for him. But I remembered my promise and wanted his future to remain open with options and not be dependent on a machine. So the procedure was cancelled, some doctors thought I was crazy and maybe I was but I no longer cared what people thought only what would be best for Jake and what would he want? Joel and I celebrated our 10 year wedding anniversary in the hospital with Jake; we had planned on a big fancy trip and realized how quickly your life, the plans you make and prepare for have to be changed. Also we realized how most of that “stuff” doesn’t really matter. We had our anniversary dinner in the cafeteria and exchanged new watches which symbolized the roundness of life eternal and our love for one another to make it through difficult times in our relationship. We were so thankful to be able and hold our baby boy that night and knew the gift he was to us, how special he is and how grateful we were to give him all we could. The gift he has given us by fighting for his life and we had another 24 hours to be with him. Jake defied all the odds and was determined after he was nursed back to health we decided to take him home.
Jake was a miracle he was never expected to make it through these obstacles and here we were walking out the front door and taking him home. We know without a doubt how very special Jake is we are uncertain about his future and how we will continue to care for him but we are more determined than ever to make sure he wants for nothing. We wondered how much more his little body could take. We know for certain Jake is a very special son of our Heavenly Father who he has entrusted us to see to his needs. How it would change all of our lives forever!
We were not even sure what the next 24 hours would bring how unstable we all felt, but strengthened to continue on and somehow make each day count by being so involved with his entire family. I also promised Jake that if he could make it through the coming up fall and winter when the spring came we would go to the beach and Disneyland. What a long shot it was as we were constantly reminded how fragile he was and that any sniffle could mean the end. But Jake had other plans -
Heaven’s Special Child
A meeting was held quite far from earth
“It’s time again for another birth”
Said the angels to the Lord above
“This special child will need much love
His Progress may seem very slow
Accomplishments he may not show
And he’ll require extra care
From the folks he meets down there
He may not run or laugh or play
His thoughts might seem quite far away
In many ways he won’t adapt
And he’ll be known as handicapped
So let’s be careful where he’s sent
We want his life to be content
Please Lord, find the parents who
Will do a special job for you
They will not realize right away
The leading role they’re asked to play
But with a child sent from above
Comes stronger Faith and richer Love
And soon they’ll know the privilege given
In caring for this gift from Heaven
Their precious charge, so meek and mild
Is Heaven’s Very Special Child”
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