Jessica (xbratx99) wrote in jacksonsheart,

Jackson John Muhowski 9/12/06-6/20/07

Hello everyone,
I really don't know how to start this email.  You can tell by the subject what it will be about. 
We are sad and depressed.  We never imagined this and we have never experienced so much pain.  We try to laugh and smile, but it seems shortlived because you go right back to thinking about Jackson.
I will finish his story with you right now. 
We went down Monday having an idea that it would be sometime this week that he would pass.  His numbers have been steadily declining plus he had stopped urinating.  His doctor asked to talk with us again and we went with her.  The concern with Jackson this time was that he was declining but there was no way to pinpoint exactly when he would go.  She knew we wanted to be there.  There wasn't a guarantee that we would be there with him if he went into cardiac arrest and also there most likely would of been a team of doctors around.  She gave us the choice to "control" the situation.  We could leave things as they were, we could cut back on his heart meds or we could remove the breathing tube.
Sara and I went for supper, talked and then went back to the hospital.  We talked a bit more with the doctor and told her we decided to have the breathing tube removed.  By doing this, we would be able to hold him without anything on him and also be surrounded by our family.  Not an easy decision at all, but the right one.  We decided Wednesday June 20th at 11:00 a.m. would be the time.
Staying by Candee the last couple days gave us the chance to spend all the time we wanted with him.  We were able to meet nurses that took care of Jackson who we only knew from talking to them on the phone.
Candee went to see Jackson before we arrived there this morning.  We went to the hospital right around shift change at 7:30.  All the nurses and doctors from that shift were stopping in to say there goodbyes to Jackson.  He made lots of friends there.  We were also very happy to see his Nurse Anne there.  She is one of the sweetest people you will ever meet.  She was actually with Jackson more than we were so it meant alot for us that she was there.
Sara, Molly and I were able to spend all morning alone with him.  There was something that happened while we were there that relieved any doubt  we may of had.  Anne was changing a dressing on his belly.  It was very hard on Jackson.  He was so filled up with fluid that with every touch he would tense up in pain.  His blood pressure would shoot up.  I was holding his hand while this was going on and it made me break down.  He was in so much pain, I realized it was the right decision and I cried hard.
We both had our immediate family in there with us.  Everytime someone came in the tears would start again.  All of a sudden it was close to 11.  We asked the chaplain who had baptized Jackson to come in before they took out the breathing tube.  We all gathered around and he said the Prayer for removing life support. 
This is where the floodgates really decided to open up.  This is where Molly started crying.  That was extremely difficult to see.  I was holding her and she was hugging me back.  After the prayer we all exchanged hugs and people kissed Jackson, including Molly.
We called in Dr. Nancy Ghanayem.  She gave him a big dose of morphine and some other sedatives.  They took out all the lines and then Sara took over.  She picked him up and sat on the couch, Molly sat next to her and then myself.  We took our time and then asked for Nancy to come in and remove the breathing tube.  He didn't have to experience any pain at all.  We held his hand and rubbed his leg, both of our parents stood behind us(as they have throughout everything) taking turns comforting the both of us. 
It didn't take long at all, another reason for us to be comfortable with the decision.  Jackson passed away right around 11:20 a.m.  The only thing that was keeping him around the last couple days was that breathing tube.  Having him go this way was the right decision.  It was peaceful and he was surrounded by love. 
To Jessica and Aunt Sue, Thanks for all of your extra work and effort for us.
To Candee, Thanks for extending your hand to us and taking us in on those late nights and keeping Jackson company when we couldn't.
To Anne Dewey,  You are a wonderful nurse and person and we are forever thankful for your caring heart.
To Dr. Nancy Ghanayem,  Since we met you, we knew you were special.  You were Jacksons guide throughout this entire journey and now it will be his turn to guide you through any other difficult times.
To both of our parents, thank you for teaching us how to be strong and how to love.
To all the other family, friends doctors, nurses and strangers who have followed Jackson, thank you.  The support has been overwhelming and greatly appreciated.
To Molly,  you are the best big sister anyone could ever have.  You had a bond with Jackson before he was born and you will continue to do so.
To Jackson,  We love you little boy.  Keep watching over all of us and be that angel we know you will be.
Thank you all so much for everything.
It has been an honor and a privilege to be able to share Jackson with you.
We will get all the other information out to you at a later time.
Take care
Jake and Sara
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