for the last 3 and a half years we’ve been going to the hospital to get Fs Mickey button changed.
Now, technically, we can do it at home. Unfortunately the first time we tried it F had an infection in the wound and it really hurt. She freaked out and since then Nurse H does it. She’s the specialist stoma nurse and F has known her almost all her life.
it was going well until today. For various reasons nurse H isn’t allowed to do it anymore. Today I was getting trained and doing it with her and it all went tits up.
F has got really strong stomach muscles. (Although according to her she hasn’t because you can’t see the “stripes on her tummy”. What can I say? She obviously has a great role model in me, not).
She was tense. Tense muscles contract. I tried to pull it out and it got stuck. Nurse H took over and she had to practically yank it out and shove the new one in. That’s not how she did it, she’s a professional but it was almost impossible for her to do it.
So after 3.5 years building up to F allowing me to do it, we are back to square one.
Nurse H’s suggestions? Back to the child psychologist to help F get over this fear (of something that is actually uncomfortable and sometimes painful).
Or go back to a PEG. This can stay in for years (but you never know how long) but requires surgery to put in and change. And there will be a tube dangling from her body again.
Rock and a hard place.
(I was going to call it Hobsons Choice but I googled. What we have is a dilemma (2 unappealing choices). A Hobsons Choice (this or nothing) might be easier. Then I wouldn’t need to decide.
so, what to do?
Unpleasant experience every 2-3 months, potentially scarring her psychologically (some more).
Or surgery every 3years or so. And having to be careful every minute of the day so that the dangling tube doesn’t get caught on something.
Rock and a hard place.
The coach in me is saying “that’s not a helpful perspective” and she’s right. But I need to find some energy so that I can let go of this very stuck and comforting perspective (as long as it’s a rock and a hard place it’s really easy to put off making a choice).
I think it’s time for some Dr Seuss
WITH YOUR HEAD FULL OF BRAINS AND YOUR SHOES FULL OF FEET
YOU’RE TOO SMART TO GO DOWN ANY NOT SO GOOD STREET
January 28, 2015 at 7:51 pm
I think there is more to that than only a dangling thing, if it got stuck it will be unpleasant and sometimes painful and I think more often than a Mickey. Plus she doesn’t have to go to surgery, which will also effect her.
Maybe she can decide for herself?
I hope this is useful in your decision. Good luck!!
February 2, 2015 at 9:03 pm
thanks Elisa. I think it’s too big of a decision for her to take but I am worried about the constant watching out for the tube. haven’t decided yet.
January 30, 2015 at 1:54 am
Dear, just wish you and your child the best. We was refusing feeding tube for years for Ethan. Today he is a strong candidate for this. We are lost in our choice, he is 11 and he is a boy. Praying for your family,dear.
February 2, 2015 at 9:09 pm
Lilia, your best wishes are appreciated. F has had some kind of tube since she was born. at first it was a nasogastric tube (she was on IV fluids 24hrs a day) and at 14 months we changed to the PEG. her first year she drank milk but then stopped and didn’t progress to eating so the PEG was then used for fluids and food.
I don’t know how she would have survived without a feeding tube, even if it wasn’t always for food. it has made it easier every to give medicine and keep her hydrated when she is sick(er).
I hope you are able to come to a decision that eases your mind and Ethan’s life.
generally F hasn’t had too much trouble with them. well, there is always a down side but I do think she wouldn’t be here without it. and she can’t swallow tablets so she would die without a tube of some kind.
good luck with your choice. I saw the amount of tablets Ethan takes. well done you for helping him to be able to do that every day.
January 31, 2015 at 4:02 am
A very tough call. Our daughter has had a PEG for 3.5 years since birth. I’ve read and researched both Mic-key and PEG as I’m sure you have. Pros and Cons on each side. She calls her PEG Mr.Tubie. It’s part of her body now and luckily, we’ve only had minor tugs and pulls. Good luck on your decision. I know how hard it is.
February 2, 2015 at 9:14 pm
hi Carole, that sounds like us. F had a nasal tube until 14months and then a PEG for 3.5 years. we moved to a Mickey to avoid an operation every 3 years or so. and she became much more active physically once she had the Mickey because she didn’t have a tube that could get caught. it was always a part of her but she didn’t give it a name :0)
I haven’t decided yet but I think we are. going to see if we can make the Mickey change a non-traumatic event. I do know that other parents can change mickeys for their kids (I’ve seen their videos). but it’s not something I can decide about quickly: aneasthesia is a dangerous thing and not done lightly. Besides, she finds IVs more traumatic than he Mickey change – not handy when the primary treatment when she gets really sick is IVs.
but thank you for your support. it means a lot to me
February 3, 2015 at 4:20 am
Luckily we’re still in a younger stage. We haven’t had to worry too much about activity with the kidney disease part of her diagnosis (keeps her pretty tired). I agree, I think there are wonderful ways to make the mickey exchange more calming. You probably already have tactics. The good news is, it’s fast. But like everything, it must be the build up towards it. Thinking of you two. This is something you and F should never have to worry about and yet …. Lots of love your way.
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