Journey With Ray

Raymond was brought into emergency Brain surgery and it was there they found that Raymond had an abscess on his brain from an untreated sinus infection

They took him into surgery where they drilled a hole in his skull to try and remove the infection, abscess

Raymond survived the surgery and was brought to the Neurological ICU unit. It was 4am and I finally got to see my Son. I was numb and thought I was going to crash. There was my child just laying there hooked up to every kind of machine, he wasn't even breathing on his own a machine was keeping him alive

Oh Dear God I prayed please protect my son Lord, Please keep him safe and HEAL him Lord

My insides shook

Raymond fought over the next few days, his intracranial pressures were elevating by the minute, and his vitals were all going downhill

11-15-08 was rushed back into surgery to save his life. His pressure sin his head were so high he would have stroked if they didn’t remove his cranium so the brain could breathe.

I was faced with so many decisions. I was Raymond's chosen health Proxy. I was asked to sign so many consent forms to perform all these surgeries. I prayed I was doing the right thing. No matter what I didn’t want to lose my son.

Raymond once again survived a scary operation - they removed my son's skull, my poor child

I can barely sit, eat, sleep, I feel I a barely existing yet I am in survivor mode. My child needs me I need to somehow make sure he knows I am there. I kept vigil 24 / 7 in the ICU waiting area and by his bedside. I couldn’t touch my son or caress him for this made his pressure rise

All I could do and pray.

When by his bedside all I could do is watch all the machines and was fixated on the numbers. My heart would pound when they elevated. Raymond was put on a cold bed, like he was partially frozen just to keep his body temp down to prevent swelling in the brain

Raymond remained this was for weeks. I found myself hiding after awhile from the doctors because all they had for me was bad news. Something else seemed to be failing on him.

Organs were shutting down; his blood work was so bad. I found little cubby areas off the waiting room where  I would go and sit and pray fearful that they would call my name to tell me something else. My body trembled. I remember every time I could go into Raymond's room I had to be buzzed in by ICU secretary and the music when I was put on hold made me terrified I would try and block it out of my mind. I do not know how I am surviving seeing my son like this is killing me. I am so weak yet determined to make my son better.

Raymond was always terrified of Hospitals so I always thought in my mind he cannot communicate to me, is my baby scared. I would sing to him, hold his hand and tell him. “Raymond do not try and talk I know you can't they have you on strong meds to keep you still. But do not worry Mommy is here and I’m not leaving you. You are in good hands baby. Mom is on top of everything that is going on with you and do not worry only the best will be taking care of you. Raymond knew his mom was a take charge person

I wanted him to know he was never alone

I lived at Umass memorial Hospital for 6 weeks day and night.

The holidays were coming upon us and my Son was still in a coma. He was in a medical induced coma with no brain activity at all to try and give him a rest and try to bring swelling of brain down. While families were preparing for their holidays I kept guard by my son's bed. I could not leave him and as for the holidays I felt bad I had no desire to celebrate after all my baby was lying on a cold bed fighting for his life. I had a younger child I felt so bad for; I had no time for her at all. She was 6 months pregnant expecting her first child and this was suppose to be a happy joyous time for her and instead it was full of fear and sadness. My daughter April also stayed by her brothers bedside. When times got really rough and machines were beeping and he was crashing I had to run, she stood right there in the midsts of all the Neuro ICU and held Raymond's hand saying Brother I am right here, do not worry I am here. You keep fighting Raymond, don't give up. My daughter's love for her brother is endless. They shared a condo together to help with expenses, so she has really had a hard time seeing all his belongings at the house and not having him there. It has been a financial burden immensely.  

Raymond continues to fight this horrible fight and as each day passes he is slowly getting healthier body wise. Thanksgiving is upon us and I have no desire to join anyone I need to be by Raymond’s side. My Fiancée, daughter, and little step son are in just as much a loss for celebrating as I am. We spent that day at the hospital together praying.

 I was brought into a private room where the Neurointensivist gave me the grave news. She told me Raymond only had a 2% chance of ever waking.  I was angry, numb, and told her well that is Science, My God says differently and I ran out of the room and into my son's room and help his hand.

I burnt some cd's for him and would play his favorite music and amazing things were happening. He started to move his thumb. Raymond would only communicate for me. He was scared of the Doctors, so I would ask him to move his thumb for mommy and he did. Each day I was seeing signs of Hope. Yes a little move of his thumb sent me rejoicing. This went on for weeks. His numbers started to get better all around, the infection was starting to slow down meaning his white blood count was becoming more normal.

Raymond remained in the ICU till Dec 24th. Yes Christmas Eve we were transferred to Spaulding Rehabilitation in Boston, Ma.  While family and friends gathered to celebrate I was driving in an ambulance with my son to Boston. I could not and was not allowed to stay there like I could at ICU. Raymond was still trached and having hard times breathing. He had to be suctioned frequently just to breathe. I had to leave my son at 8pm. Are you kidding me I said to the nurse this is my child it is Christmas Eve. Those were the Rules

My daughter and I drove home to join family and I cried the whole way uncontrollably. I had to leave Raymond in someone else's care and 1 1/2 hrs away. Gods please make sure they suction him, please make sure they watch him good. Oh Dear God I said I cannot do this Please help and I fell asleep in the Car from crying so hard.

I arrived at my sister's for Christmas Eve party and my whole family was waiting for us. They had warm food waiting and presents to open. I don’t know how I got through the night and of course the next day Christmas day.

I woke up and said ok Carol you need to do this for Toby, Little Steven and April. Do not ruin their Christmas it is suppose to be a happy time. Well we started to open gifts and I lost it, because Christmas was Raymond's favorite time of Year and he wasn't with me. I was never without my Son for any Holiday. All I could think of was the flowers he always gave me, the coffee in the morning and Mom-Mom's tea ring, the singing of songs and kisses and hugs. I felt the biggest hole in my heart. My children are my soul and I felt part of it was missing. My Fiancée Toby had gotten up extra early just to surprise me. He had cooked dinner very early actually it was ready at 10:30 we ate Christmas dinner at 10:30 am just so he could bring me to Boston to be with Raymond. He is an amazing Man. We all arrived in Boston by 11:45 and I just needed to hold my son, hug him. I ran down the hall to his room. He laid there still in and out of it breathing hard. I leaned over his bed and just laid my head on his chest and hugged him and said Hi baby Merry Christmas. The most amazing thing happened Raymond opened his eyes, leaned his head down towards my face and kissed me!!!!!!!!!!!!!!!!  My son kissed me for the first time!!! That was the greatest Christmas gift I have ever received.

Raymond's journey continued. Each day was something new and sometimes bad.He was still very sick, weak, disoriented, and unable to communicate in anyway. As days went by he started to get stronger . His body was getting healthier. How can anyone in the state Raymond was in participate fully in any therapies. I know when I do not feel well it is hard to even work out.  Raymond was still trached and having many issues with breathing and yet they had Raymond up and in therapies everyday. It was hard to watch as a mom. He struggled so hard just to keep his head up and breathe. Being his Mom I wanted to so badly hold his head up for him, help him in anyway yet I couldn't help. His breathing terrified me. All I could remember was the ICU days of him fighting to breathe and seeing him choking and still needing to be suctioned in order to breathe. It was a struggle just to lift a hand or finger.

Raymond continued to fight hard. I could see him really trying. As long as he knew I was there he would participate. He wouldn't do much if I wasn't there. He needed the security of knowing his mom was with him. After all he didn't know where he was or who these people were. But as time went by he became more aware of his surroundings and was fully alert.

The stresses of everyday life were so hard to bare I do not know how he pushed through everyday. Raymond was so sick from all the antibiotics his was on that he had to deal with severe diarrhea on top of everything else. He was still unable to move his lower extremities and could barely sit up. The therapies everyday helped build strength and they seem to make him stronger and Raymond was progressing more and more

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I will keep updating