"4 Daymon", his struggle for life....continued

The next entries are very painful, and come directly from a diary I kept, the whole time Daymon was on ECMO. It was intended to be something I could give to Daymon, when he was older, to let him see what he had been thru.

OCTOBER 26

You came in last night and they put you on ECMO. You are very sick right now. But I am very sure you will soon be much better, and home with us real soon.

ECMO- 500cc/hr

100% oxygen

SAT rates 96%

50% support

You are down on meds and moving hands and feet, sucking on vent tube. Color is red, face is swollen, due to infection.

OCTOBER 27

Today has been a good day overall, Daddy and I think things will look better as the days go on. Your blood gasses are coming back good, so they are able to turn your oxygen level down.

ECMO-540cc/hr

74% oxygen

100% SAT's

60% support

OCTOBER 28

You had visitors today. Grandma and Grandpa Hoffman came to see you. You are a little more red and swollen today. The doctors are worried about how swollen your tummy is.

ECMO-600cc/hr

54%oxygen

100% SAT's

65% support

OCTOBER 29

You had chest tubes put in this morning. That really helped with the swelling in tummy and chest. You look alot better tonight. Daddy and I are very hopeful that this is the the turning point and you will get better now. They turned up the oxygen to keep you from trying to breath. Your blood preassure is good and you don't need meds to control it. We love you very much Daymon!

ECMO-600cc/hr

97% oxygen

100% SAT's

65% support

OCTOBER 30

Today you are very red and swollen. I am very worried about you. Kathleen and Jackson came up to stay for the weekend. We miss being a family, its great to be together. God please help him get better!

ECMO-800cc/hr

97% oxygen

97% SAT's

max support

OCTOBER 31

Happy Halloween! Today you started steroids and you will get some of my white blood cells, in hopes of building up your immune system. I hope it works! It is alot easier to manage your BP and your color is alot better. I love you baby boy.

ECMO-700cc/hr

97% 0xygen

97% SAT's

80% support

NOVEMBER 1

Today you look very good, your color is very good. The steroids seem to be working. Daddy read you a book today, and spent alot of time just kissing your head and telling you he loves you. I feel so bad that you both have to go thru this.

ECMO-600cc/hr

97% oxygen

97% SAT's

65% support

NOVEMBER 2

Today you were given surfactin, to try to expand the airways. We know it will work you are such a fighter, something has to work pretty soon. We have decided not to focus so much on ECMO, it is really getting hard to handle the constent changes in it.

NOVEMBER 3

GOOD NEWS! today your X-rays showed that your bronchials (large airways) opened up. Now we just have to wait for the small airways to open. They did a bronchioscope and put serfactin into your lungs. They have ordered PT and OT for you. They turned your oxygen down. That means air is getting into your lungs. We used a stethescope to listen for air. We could hear the ventilator pushing air into your lungs. We got a card today from Aunt Bonnie, We honestly dont know what we would do without our family to help us through all this. WE love you Daymon.

NOVEMBER 4

Today your chest x-ray came back that you have a lttle more air in your lungs. I pray every day that God will help you through all of this. I think he is going to give you a complete recovery. You are going potty 1kilo/hr. That is very good it means ECMO isn't doing everything for you. You are still fighting, you opened your eyes for me today. WE love you!

NOVEMBER 5

Today we were told you have two brain bleeds, they are marble size, and air is leaking into your blood. Your x-rays are not any better. The doctors think we are at the end of the line. I don't beleive that you are still so strong, you opened your eyes again today. Mommy will never give up, not until I am sure there is nothing else they can possibly do. I love you Daymon, I know you are going to make it.

NOVEMBER 6

Today your brain bleeds are worse, they are going to give you a few days to rest and then try the ventilator again. I love you very much Daymon, I don't want to loose you. God please dont take my baby. I love him to much to loose him!

NOVEMBER 7

Today is so hard for me I know I am going to loose you. You are having seizures every 60 -90 seconds, they can't cotrol them with meds and I feel like you are suffering. You looked at me as if to say goodbye, its something that is going to be so hard for me. I wish I could be selfish and say I wont let you go. But I love you too much to let you suffer. Today I went to the chapel and asked God to take you home quickly and to end your pain. I'm sorry Daymon, please don't hate me for that, I would rather hurt forever then to see you hurt anymore. I love you so much, you will never know how much you are loved.

NOVEMBER 8

Today is he hardest day of my life, I asked the doctors to take you off ECMO. Both sets of grandparents are here to say goodbye, as well as Mary & Dustin, your God Parents. Daddy can't take it and is waiting in the hall (now he wishes he had held you, he loves you very much), as everyone takes a turn holding you one last time. I finally get to hold you and tell you I love you, it's OK to stop fighting now, you can go to sleep. I love you very much. I'll see you in heaven someday, my sweet angel. Until then I'll hold you in my heart.

Daymon died surounded by love, watching him go was one of the hardest things a mother could go through. As he lay in my arms dying, I kept asking God to please give me a miricle save my baby. It was hard to watch my baby gasp for air, and and wait for his little heart to stop beating. I remember at one point trying to breath air into his little lungs, hoping and praying it would work. And when his heart stopped wishing it were me and not him. So I bathed him, dressed him and wrapped him in his blanket. And Grandma Hoffman & I carried him down stairs to the morgue. After I handed him to the nurse I felt so empty, I didnt know what to do with my hands, my mother-in-law Barb was there for us through the whole thing, for that I am very thankful, somehow she must have known, because she grabbed my hands and we walked together upstairs by Brian & Dad Hoffman. Had she not been there for me at that moment I probably would have broke down. I didnt want to leave him or for it to be the last time I would hold him. It hurt so bad. Leaving the hospital was so hard, I really thought someday I'd be leaving there with my baby. It's a feeling I wish no parent.