Our son was on a vent

Hello to all of you,
My story is long but I will summarize. We adopted a 2 year old last year and his birthparents had another child who was born drug addicted and a preemie. He was in the hospital for over a year with a trach and a vent. Right after his first birthday, we made preperations to take him home and eventually adopt him. He was only home with us for two and a half weeks before he died (July 13th of this year.) I would follow this message board diligently but was not able to post my questions because I didn't want the birthparents to read my comments.
I am still finding myself following your stories and longing for the sound of the "High Peep" alarm going off in the middle of the night. After our son died, the hardest thing to handle was the quiet at our house. No nurses, no 16 breathes per minute, no moniters.
We had two nurses in our home on the night he died. He decannulated and went into cardiac arrest. It was ruled natural causes and not an accidental death from the decannulation. We got the trach back in as soon as it came out that night. I know in my head that we did everything we could to prevent his death--and if it could have been prevented, it would have been. We loved him so much and worked so hard to learn all that we could about his health, his trach and his vent. In the hospital, he had had monthly "blue" spells that were unexplained and that is probably what happened in our home.
We were able to be with him when he took his last breaths. He was such a wonderful little baby--so full of promise and life. He had to go through so much in his 1 year of life and I must remind myself that his life was not cut short--for some reason his life was meant to be only 13 months long. He sure touched all of our hearts in a profound way in his short time with us.
I come back to this site often and read about find comfort in reading about your kids on vents--LTV950 and its settings, how you set things up and get around in the community etc... I almost feel jealous at times reading about your lives with a child on a vent. I was so overwhelmed at times taking a baby home on a vent and now I would give anything to have him here with us. I miss my life with Evan.
I just wanted you all to know that your stories encourage me and remind me that not all situations turn out tragic like mine. I think it was the heroin and cocaine in his system at birth that really complicated his prognosis.
I carry around a green swivel with me when I am missing our sweet baby Evan which is most of the time.
Anyway, thanks for the support you have given me for the past year when you didnt even know you were supporting someone. You made me believe that we could do this even though we felt overwhelmed at times. You have my prayers always and I know I will be back to check this site to feel a connection to my baby on a vent.
Julie

[Mom2TwinsPlus1]

Julie-
First of all nice to meet you, I am glad you can speak out now. I am so sorry about your loss. That must be incredibly hard. My daughter is on a vent and is the hospital right now and I miss the sounds of her vent too. You never notice how noisy they are until they arent on! I cant imagine the pain of not hearing those noises forever. You must be an incredibly strong woman. I have not lost a child to death but have lost a chld back to her both mother in an adoption/guardianship thing and its so hard being with out her, I keep in touch with her but the day to day is still very hard. If you ever feel like talking please pm me. Again, my deepest condolences and thoughts are with you

[lovemymak]

Dearest Julie,

How absolutely heartwrenching. I can feel your pain through your words. I can't imagine what it would be like to not have Keturah in our lives. I take for granted that she will always be with me. God must have wanted Evan home in Heaven with him, which is such an amazing blessing. I that you will always feel Evan's presence giving you the courage and strength to continue caring for your family. You are an amazing woman.

Sarah

[Livi's_mama]

Julie, I am so sorry for what you've been thru. You can definitely see the love in your post.

Evan is now an angel watching of you and any future babies you will take care of.

Are you a foster mother? I am one as well. Olivia is my own child, though. Ppl always assume she's my foster baby.

3 out of 4 of my foster kids were crack-cocaine addicted at birth. Sad but true, it actually strengthens them. I guess because they have to fight for life from the get go?

If you a truly wanting to do vent care for kids, you can. I know even in our hospital there are quite a few that have no place to go and generally it's not something foster parents are trained to do. I know of one little girl that I would have loved to bring home, but my family thought having 2 babies vent dependent would be too much on me (SAHM, only 20 hrs nursing per wk)

And now that I think about all the traveling issues, I know in my heart they are right, but it's still hard knowing she's just living life in a hospital. To me, that's NOT living a life.

Once Olivia gets off the vent I do and am planning on keeping vent kiddos. I am also pursuing my nursing degree.

You sound like you have so much good in you!

If you are interested you could contact a social worker at the hospital and they can point you in the direction of any case managers for 'available' children.

Good luck to you!

Thanks so much for all of your kind words. Trish, yes, we are foster parents. We don't take many kids and we keep our license open just in case a child comes along that we want to take. We have living 7 children (5 adopted through the county system.) Â*After Evan died, the nurse manager told us about another child with medical issues that needed placement from the hospital. This child does not have a vent/trach but has other significant health concerns. I am just too scared to take another child on a vent. I think maybe if we had had Evan longer, we would feel more confident but I am just too scared of losing another child right now. This new little guy does have some nursing hours but he is not 24 hour care like Evan was.
After reading the post about the child that decannulated and the nurse panicked and didn't even know that he had decannulated, I get scared again.

[zachgram]

My grandson is on a vent and I can't even imagine the pain we would all feel if we lost him. He's now such an integral part of our lives. God bless you and your little
________
Mac game