Coll- g-tube question

[anonymous]

Hi Coll,

I wanted to ask you if you ever feel uncomfortable or experience pain when your Mic-key button is switched (a new one is put in)? Sami always seems crabby and sometimes will position herself with pressure on her stomach in the first few days after changing the button. I'm not sure it's the button though, because it happens that the last two times we have changed it, she has been sick (unrelated to the button change).

Maria (Sami's mom)

If anyone else wants to reply, please feel free.

 

[NoDayButToday]

Actually, up until July I didn't have the Mic-key system as my 'button'.. I had a bard button, which is different in that it has a sort of plastic mushroom cap holding it in as opposed to the balloon of water in a Mic-key. So, when the Mic-key was put in, it was painful because the Bard is never as smoothly removed, because the mushroom cap can only be stretched out, not deinflated. Afterwards, I did find it was sore in the area, and actually, pressure did help a lot with making it feel better for some reason. I couldn't explain why, but it did. The soreness/pain only lasted for maybe 2 days though.
Even now, about 2 months after the switch, I find if I accidently tug on the tubing in my sleep and there fore pull on the button a bit, the soreness in the morning goes away with pushing on the button. So Sami is probably relieving the slight soreness that happens when they change buttons.

 

[anonymous]

Thanks for the info, Coll. OW! Taking out the Bard must have been painful. My mom once pulled out Sami's Mic-Key inflated balloon and all! (It was attached to her "dress up" tutu!)

Sami caught a virus from her two sisters and had been vomiting for the last two days. Earlier in the week, we also changed her button. I know the vomiting is from the virus and probably the crankiness and discomfort. However, lack of sleep causes me to be paranoid sometimes and I keep thinking "Maybe we placed the button wrong."

Maria

 

[anonymous]

Maria,
I think that we might have converesed in the other forum.
I just read your post about your daughter and was thinking how hard it must be to be a CF mom. I have CF, but I am a mom too, and I am glad a million times over that it is me who has this disease and not my son. You deserve (and all the parents out there) a lot of credit. I wanted you to know that I was thinking about you and Sami, and I hope that she gets better soon.

Wanderlost

 

[anonymous]

Wanderlost,

Thanks for the kind words. Yes, we did converse on the Adults forum. I hope you didn't take my post negatively, it's just really frustrating sometimes. Despite what we do, CF has made my daughter's life very difficult. And despite it all she really is amazing. But there are times when I can tell that she has just had it. As a mom, you must know, those are the most difficult times.

What has always been so frustrating to me, is that there sometimes is no rhyme or reason for CF's path. I've tried to research genetic mutations, studied articles, read and read posts from others here. I've come to accept that we just have to do what we have to do to keep her as healthy (and happy) as possible.

Thanks again,

Maria

 

[SeasonsOfLove]

Maria,

Coll is a tough cookie and rarely complains - she called me at work after the buttons were switched to say how much it hurt - so I knew it really really had!

I'm sorry Sami is having such a difficult time right now, and I hope things improve for her very soon!

 

[anonymous]

Coll
I f you don't ming me asking which of the two buttons did you prefer? My son (13) had the Mickey for over 7 years then just last year switched to the hard type it sounds like you had. He like the 'flatness' of this one but it leaks all the time. he wears an undershirt to absorb the leakage. (The Mickey never leaked) He's due to change Monday and he;s trying to decide which one.

Thanks
Terri

 

[NoDayButToday]

Terri,

The Mickey has never leaked for me either- which is nice, since my Bard did leak a but, though it wasn't a daily occurance, but did sometimes happen. So I prefer the Mickey in terms of leakage protection (sounds like diapers haha!). You're right, the Bard does have a lower profile, which has its plusses most definitely, so one point for the Bard there! I like the Mickey better in that it has a 'locking' mechanism for the tube. When I had the Bard, if I moved in my sleep a lot, I would sometimes pull the tube out of the button and wind up in a bed full of formula. Thankfully, this only happened maybe twice?, but it was still really annoying. One final thought- the removal of the Bard was quite painful (as my mom said, I was in tears, and I am pretty tough), and the reason I was switched from a Bard system (put in under general in my initial feeding tube surgery) to a Mickey was that (my mom and I were told) inserting Bards is a more risky procedure, because of the pressure needed to 'push' it in, as opposed to the ease of sliding a Mickey in.

Maria, Hope Sami gets better soon!

 

[SeasonsOfLove]

<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Thanks for the info, Coll. OW! Taking out the Bard must have been painful. My mom once pulled out Sami's Mic-Key inflated balloon and all! (It was attached to her "dress up" tutu!)



Sami caught a virus from her two sisters and had been vomiting for the last two days. Earlier in the week, we also changed her button. I know the vomiting is from the virus and probably the crankiness and discomfort. However, lack of sleep causes me to be paranoid sometimes and I keep thinking "Maybe we placed the button wrong."



Maria<hr></blockquote>

 

[anonymous]

Maria,

Sorry that previous post was from me; however I was booted off before I could type anything.

How is Sami feeling? I hope today was a better day.

-Kathy (Coll's Mom)

 

[anonymous]

Hi Kathy,

Unfortunately now we are all sick with sinus and a terrible cough. I don't know if it's the same bug that gave the girls the fever and vomiting, but it started right on the heels of it. My husband, my 5 yr. old, and myself have the worst of it - a deep cough. Mine really feels like sinus drainage just sitting at the back of my throat. I rarely get sick, but I think the lack of rest this past week did us all in.

My 5 yr. old wakes up at night coughing and has a terrible time in the morning. The ped says its all a virus, but I'm worried about Sami. So far, miraculously, she is the least affected. She is fully recuperated from the fever and vomiting, but is coughing "just a little" today. My oldest started coughing today!

I guess it's the beginning of that time of year!

Maria