Meningitis and CI from a religious point of view

Patrick McFeely's Story

 

Have any of you wondered if you really have a purpose in God's plan? I know I have. I'm here today to share with you how I came to know that I am important to God's plan.

 

I would say that in this day and age I had a pretty normal childhood. My mom was home cooking, sewing and cleaning everyday for her family while my dad went to work and school. Mom took my brother and I to church every Sunday where I established some very special friendships. These friendships helped me through my teenage years and remain in my heart forever. 

 

In my early teens I went forward at a Billy Graham crusade. At the time I acknowledged openly that I believed there was a God but I didn't think little ol' me had importance to him. I didn't realize then that God was molding me for his use.

 

My parents divorced soon after this and I felt somehow to blame. I now know that's not the case but, as a child you always wonder what you could've done differently.

 

When I was 17 my grandfather committed suicide. He was the only outside relative I really knew since my parents had moved away when I was a baby. We had shared so many memories together and I loved him with all my heart. Needless to say, I was devastated at his death. To me, he'd believed very strongly in God so I didn't understand how this could happen. I guess that is when I really doubted God's existence in my life.

 

After high school I attended the local community college where I met Mark. He was extremely funny and he made me feel good about myself inside and out. I knew immediately one day I would marry him. Two years after we started dating we were married in my home church where I had my fairytale wedding. Two years later I was pregnant with our first child and we were moving to Jacksonville. Christen was born in August of 1993 and our lives changed instantly. She was a beautiful child with blonde hair and big brown eyes just like her daddy. She grew very fast and brought us overwhelming happiness. When she was three years old our second child "Patrick" was born.

 

There was something about him that immediately caught your attention. He had a sparkle in his eyes and a smile that would stop people in their tracks. I believe he was an angel from the beginning. I worked full-time until Patrick was 7 months old. It was then that we came to the realization that our children needed me at home. For 4 months my life seemed too good to be true. Then we came to a screeching halt.

 

You see, When Patrick was 11 months old he got what we thought at the time was a stomach flu. We took him to the doctor and were sent home saying that he'd be ok. 

Within 12 hours he was in intensive care fighting for his life. It turned out that he had one of the worst strands of Bacterial Meningitis known to man. How he got we still aren't sure but, this is when our nightmare began. We were told that if we had put Patrick to bed that night he would have been dead by morning. He was in ICU for three weeks of which he was on breathing, feeding and IV tubes. During that time we made many complicated and emotional decisions. The first being whether to replace breathing tubes if they were removed and Patrick was not able to breathe on his own. We had a weekend to think about this decision. Needless to say, it was a very long weekend. We both decided immediately that we didn't want him living off of tubes and that Patrick would die if he couldn't breathe on his own. 

 

It was a true blessing that Mark and I were in agreement on all of our decisions. I can't imagine how hard it would have been had we not agreed about our feelings. 

 

During all of this I had what I believed to be signs from God. In the past when I've heard of situations where people received signs I thought they were either hallucinating or just plain crazy. But this time I was the crazy one. 

 

On Saturday evening that weekend one of Mark's friends came by to visit and he wanted to pray with us. We welcomed all prayers. So he started by putting his hands on Patrick's head. He prayed loud and strong sounding almost like a chant. I was a little uncomfortable, as I was not used to praying like that. Praying to me was quieter and much more subdued. But I soon forgot my discomfort as the nurse and I both noticed Patrick's heart rate immediately jumped from 130 to 215 and his eyelids fluttered rapidly. 

He had been comatosed for two weeks so needless to say we watched with amazement wondering what might happen next. As soon as the prayer ended Patrick's eyes quit fluttering and his heart rate returned to normal. This gentleman told us that Patrick's eyes would open that night and I thought he was crazy. But, sure enough the nurse told us that Patrick had opened one of his eyes briefly when we had stepped out that night.

 

The last and most significant sign was the Saturday night before his tubes were pulled. I had a dream I was sitting in the sand under a tree and I was talking to Jesus. I said, "If you are here you will hold my hand." He then reached up through the sand and was holding my hand. I blinked my eyes, and in that moment there he was sitting next to me. 

He said, "I am here with you and everything will be ok." When I woke up I felt very peaceful. I knew that God would take care of Patrick no matter what. I just assumed the dream meant that Patrick was going to die, he would not suffer and God would take care of him. Little did I know, Patrick had a big future ahead of him.

 

By this time most of the family was here and preparing to say their good-bye's as it was expected that Patrick would not live for an hour after the tubes were removed. We made funeral arrangements and even received a couple of sympathy cards.

 

Everyone in the family joined together in prayer in the waiting room and around his bed. 

They talked to Patrick fearing that the words they were saying would be the last he'd ever hear. On Monday the tubes were pulled and we were left holding him in a very dark and cold room. He continued to breathe and the doctors swore it was just a matter of time. We then had to make ethical decisions on feeding tubes and IV tube which we felt were extrordinary means of living. We agreed that if God wanted him to live then he would live without all the tubes. We were told that after two days without fluids Patrick's body would start to shut down.

 

At this point we decided it was best for Christen to say her good-bye's to him and prepare her for what was expected. Needless to say, she was devastated You'd be amazed at what a 4-year-old can understand.

I remember running out of tears and my body feeling numb from head to toe. I think that sometimes God makes you numb so that you can get through painful situations and make logical decisions. It is kind of like when your child gets hurt. You hold it together and handle the situation only to break down when it's all over. 

 

I began to question why Patrick was left on this earth in this condition. He was entirely brain damaged and we were told there was only enough of his brain still entact to keep him breathing and his heart beating. I understood as much as possible that God was going to take him to heaven. It was easier for me to believe he had a purpose that way but to leave him on this earth like this. What was the point? He couldn't eat on his own, hold his head up, smile, see, hear, or control the movement of his limbs. He was literally a vegetable. I remember telling him it was okay to let go and go to heaven to wait for us. 

 

I also remember looking out at the water remembering how peaceful it was. People walked by seeming so happy and yet my life was upside down. It is weird how the world still keeps going while you seem to be in slow motion. No one has any idea what could possibly be going on in someone else's world. People that we see on the streets everyday could be going through the worst situation of their entire lives and we just walk right past them. 

 

Remember, I said his body would start shutting down after two days without fluid? Well, five days after the tubes were removed Patrick started to swallow little amounts of fluid. 

While everyone else was extatic at this Mark and I did not share their enthusiasm. We were scared because this is the first time that reality set in. Patrick might just leave this hospital in this condition. How long could he live like this? What would become of us? Amazed at his endurance the doctors started making excuses for this miraculous event. 

As I recall, they used the word reflex quite a bit. I didn't realize at the time how much I'd hate that word before all this was over. They said there was still no hope for a bright future and sent him home on his first birthday. He was on Hospice care with the understanding he was going home to die. They had done all they could do. 

Less than a week after Patrick was home from the hospital his pediatrician suggested that we consider overdosing Patrick on Morphine. She said it would ease his pain and release him from this body to be in heaven where he'd be free to run and play again. 

We knew that it was wrong to do, but as a parent you don't always think ethically correct. 

We couldn't stand to see him in pain so we considered this option briefly. We decided together that if God wants Patrick to live like this there must be a reason and he'd have to be the one to take him. We could not in our conscience do this. So, Again, we put Patrick in God's hands. I learned at that time never to judge anyone's decisions in a situation I myself have not been in. Our decisions never went without thought but I now have the belief now that we were in the back seat all along and Patrick and God were in control. I just thought I was making these decisions.

Many people were so full of hope for a miracle. It seemed so easy for them to believe this since they were able to go home and not watch the pain Patrick was in. 

 

The only thing Patrick was able to do was winced in pain when we touched him. We had to give him morphine just to be able to move him.

 

Knowing that Patrick was going to die we planned to have another child to help with the grieving process. Patrick could never have been replaced but we wanted to fill a void. I became pregnant with our third child right away.

Patrick was fed from a syringe for approx. one month until he was able to swallow more at one time. The doctors still were not convinced that this was more than a reflex and he remained in a persistent vegetative state for a second month. Then, we noticed when Patrick was drinking he started lifting his left hand up to the cup consistently. Again, we approached the doctors. They decided to do a CAT scan to see what was going on. I'll never forget that appt. It was the change to this whole ordeal. The neurologist told me that day that there was a little boy in there somewhere. He did not know what Patrick would ever be able to do but he was there. In November Patrick had to have surgery. He was not draining spinal fluid off of his brain like a normal person does. So, he had to have a tube placed through his brain into the middle section. This tube ran from his brain down near his stomach inside his body. We began to notice significant changes after this. I remember saying my reward as a mommy was to see an occasional smiling face. What I'd given to see just one smile. Well, I got that first smile early in December and it seems he hasn't stopped smiling much since. He gradually got his vision back 100%. Yet, another miracle.

 

As the months passed Patrick continued to improve on a fast track. There were constant changes and doctors eventually realized this was a miracle. He appeared on the Children's Miracle Network telethon in June and the doctors have said the statistics of Patrick actually being here the way he is, are one in a million. There is no medical reason for Patrick to even be here.

 

In September Patrick had Cochlear Implant surgery in the hopes of providing hearing. Many people were skeptical about how much he'd hear or respond to. He now wears a hearing device and hears everything with it. In order for Patrick to get that device two FDA statutes had to be changed in his name. Now that these changes have been made a door has been opened for other children to receive this implant. Patrick continues to amaze everyone. In my opinion Patrick is teaching everyone a little something.

 

Patrick is now 5 years old. This is a day we thought would never happen. He eats everything we eat, walks, talks and attends pre-k in a regular public school. Developmentally, he's a couple years behind but compared to the statistics given by the doctors he is doing wonderfully.

 

He has a minimum of 3 appointments per week and receives daily Speech, Physical and Occupational therapy at school.

 

It was like a light came on one day when I was looking at that beautiful face that God gave back to me. God is in my life everyday and I now know that I am important to his plan. I have that beautiful little face to remind me of it every day. I hadn't done anything to deserve a miracle. It was just a part of God's plan. Many lives have been touched through this and it is my hopes that God will continue to work in our lives to reach others.

 

I'd like to end with a quote from Jeremiah 29 Verse 11. There it says, "For I know the plans I have for you" says the Lord "Plans to prosper you and not to harm you, plans to give you hope and a future." God had a plan and I learn more about the life he intends for Patrick everyday. We are so very blessed by his grace and one day we will see the full picture as he intended.

 

When we question God's plan for us we need to remember this verse. Thank You.

 

 

 

A picture of Patrick:

 

 

More details about Patrick and his implant:

 

I am the mother of three beautiful children. (9-girl, 5-boy, 4-boy). At 11 months of age my now 5 year old son was stricken with a fatal case of Bacterial Meningitis. To make a long story short he was sent home on his first birthday, vegetative with no hopes of survival. The hospital had done all they could for him ranging from breathing tubes to feeding tubes. He was severely brain damaged and remained vegetative for four months. During this time thinking we would lose him we planned another child so our daughter would not be without a sibling. (Not at all expecting the next chain of events.) Patrick had a VP shunt to drain 878 spinal fluid, strabismus surgery on his eyes, tubes in his ears and then a cochlear implant. We were told not to expect anything from the implant because the brain damage was substantial and he may not understand what he hears much less speak. I must say that a younger child to learn from has been the greatest stimulation for him. He will let his little brother accomplish nothing without him trying very hard to also accomplish. He is now five years old, potty trained, walking on his own (after much work with a walker, canes and another surgery). But, the greatest gift is that he is both, hearing and speaking. Getting a cochlear implant for my son was the greatest decision I ever made. I honestly did not get much of a choice of devices as Patrick had a lot of ossification and it was thought he would need the compressed array that Med-El provided. Fortunately, the surgeon was able to get all but two electrodes implanted on a standard array and that is what we went with. I am tremendously happy with the device as it has given my son opportunities he never would've received in a deaf world. He can talk to anyone. His is speaking sentences and can tell me what he wants and how he feels. He is mainstreamed in our local county Preschool program and I am excited about his everyday progress. He does have cognitive delays and is basically only on a three year old level but, I account that more to his brain damage than anything else. The doctors have said that Cat Scans show 30% of his brain is hollow and it is a miracle that he ever came out of the vegetative state that he was in. I am happy to share our experiences and hope my story helps someone in their decisions.

 

He now wears the Med-El Tempo+ (Behind The Ear processor) and has also had the Body Worn Processor. Both worked wonderfully, yet it seems that he is hearing better with the BTE. We just received the rechargable battery pack option for this device which is exciting for us as it will save us a lot more money. He was implanted at Wolfson's Childrens Hospital (Jacksonville, FL) and we are frequent patients at Nemours Childrens Clinic where he receives Implant Rehab (Speech Therapy) once a week. We were going up to 4 days a week in the beginning to boost his speech and he has done wonderfully. Patrick currently uses the Pediatric Battery pack because it clips to his shirt. This way if he or one of his buddies knock it off or pull it off it stays attached and we don't loose such an expensive piece of equipment. It's wonderful to have a choice of wearing options for different situations. He really doesn't mess with it because he knows it's purpose and wants in on every waking moment. Before being implanted he heard NOTHING and even aided we got no responses. He would move his lips but, no sound would come out because that is what he saw from us. He now has full sentences and attends a regular Pre-K class in the county public school. He develops more everyday and learns new words constantly. I hope that this has helped you either to know Patrick better or helped you in a decision you were trying to make for you and/or your loved ones.

 

Thank You, Lisa McFeely

 

For more information on the local Jacksonville, FL 

Cochlear Implant Support Group 

 

904-282-6528 or e-mail: Diese E-Mail-Adresse ist vor Spambots geschützt! Zur Anzeige muss JavaScript eingeschaltet sein!