After learning that Ben isn't a candidate for airway reconstruction because of his anatomy and that he will have his trach for life it has really given me some time to reflect on life with a trach...probably more related to kids that have other medical issues on top of the trach than typical kids with one. I have figured out that I really have a love/hate relation with the trach.
The trach has given us Ben and the ability to bring him home. I love it for that reason and will always be grateful. Without a trach, we know that he wouldn't be here. And I cant imagine life without Ben in it. But at the same time, I hate what all goes with having trach... for him and for us. I decided to write this to let people know how different life is when your child has medical issues and a trach. So many people have no idea and I was one of those people before we ventured down this path. After seven years of living this life, I felt it was time to share. I hope this doesn't come across as me whining or complaining, because that is not my intention. I simply want to share our life and the obstacles Ben/we face because of the trach.
Ben needs a trained caregiver at all times, even when sleeping. Because of this, we have/use home care nursing. Nursing has its goods and bads. Good- Allows us the opportunity to sleep at night. Ben can attend a typical school (even though it is in a special ed classroom) because he has a nurse that can go with him. It is nice having help during the day so I can do household chores, help taking Ben to therapy/doctor's appointments since he requires someone sitting in the back with him to suction when traveling, etc. Bad- Not all nurses are good. Actually, we have come across more bad nurses than good so when we find a good one we try all we can to keep them. Nurses have their own lives too and will help when they can but you can't rely on that to make your own plans. I miss having our house to ourselves. Nurses come and go and that is hard on Ben. He never know when a nurse is off or isn't going to be back ever. The turnaround in home care nursing is really high.
Ben can't be left alone at all, ever because of the trach. This is hard on us and Ben. We have finally gotten to the point where we feel comfortable listening and watching him via a video monitor so he feels like he is alone playing and someone isn't watching him 24-7.
I am very envious of those moms who can take their kids somewhere by themselves. I dream of doing this one day. And maybe as he gets older, needs less suctioning and stops pulling out his trach, I will be able to. I have advanced to be able to drive him around the city we live in by myself because I know the roads/traffic well, know where I can pull off, etc. The highway is a different story!
So much of Ben's care takes two people. Difficult always needing someones help. And the care of a trach, feeding tube, bowel plans, etc is in addition to that typical care a child receives.
You get very little privacy when you have nursing in your home and your nurses need orders from a doctor to do ANYTHING. Feels like you don't have say if your child's care. Also, because Ben received state funded aid for his care, they also have to approve everything and am monitoring how we care for him.
Having a special needs child who signs with a trach limits who can watch him when you and your husband want to go out. Because of this, we rarely get to do things together. I am lucky that my mom can watch him in addition to a nurse, but those occasions are few and far between. And having someone other than me around is hard on Ben because so many of his signs are difficult to understand.
The constant worry of a plug, trach coming out and not being able to put back in, someone tripping while caring him, him getting sick and winding up in the hospital or even us getting sick and unable to care for him wears on you.
I also worry about Ben's future - what is going to happen when we get older and what would happen to Ben if/when something happens to us (especially since Ben is an only child). I try not to think about this much but it pushes its way to the front of my mind more than I would like.
And last but not least, my heart hurts for Ben and the fact that he doesn't have any friends. He is rarely invited to a party, he doesn't do play dates and all of his time is spent with adults. He gets so excited when kids are around but most kids are scared of him and won't let him get close and touch them (which is all he wants to do because he is so excited). I love that he has some friends at school and am thankful for that but wish he had more opportunities to be around other kids.
1 comment:
Thank you for that honest post. We think of you and Ben often, and know that he is loved by the Kurby family! He has a special place in our hearts always. You are a fantastic mom and he has allowed you to be a mother in more ways than most mothers can ever even imagine. You are a phenomenal person.
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