Getting his Wish, James is Going to WDW- GKTW March 16, 2010

[Momofwishkid]

Hi Amber, your trip is getting so close!! Your shirts are great I love them. Congrats to James on his win that is so cool. Im so sorry you have to come back to Seattle but hey we might get to meet.
As far as the weather like Amanda said it was starting to warm up toward the end of our trip so hopefully you'll be fine. I would count on have pants and sweaters for night time though. As soon as the sun went down it got COLD even on the nice days.

 

[Wee Annie]

The nurs said something about "granulated tissue" and that if the injections of antibiotics don't help to ask to have the spot cauterized...ever heard of this? Did Ty's get infected more than once? I thought maybe because it's new...do you think the Mickey gets infected as easy?
OK so you said if I had any questions to ask!!!

Amber, Elke has had problems with granulated tissue here and there. But as mentioned, that Calmoseptine, if applied as soon as I see the problem arising, does wonders. She has had less issues after the tubing was replaced by the Mic-Key button.

 

[alaskanabbott]

Amber, Elke has had problems with granulated tissue here and there. But as mentioned, that Calmoseptine, if applied as soon as I see the problem arising, does wonders. She has had less issues after the tubing was replaced by the Mic-Key button.

I'll talk to the doc about that...it is much better today, Whew!

 

[alaskanabbott]

I've been battling a head cold off and on for about three weeks. It finally cleared up a few days ago, then last night after dinner WHAM the flu hit our house! Well not the whole house just Mackenzie, Elijah and of course me! I never get the flu, in fact we all had the flu shot, which made me wonder if we had a little food poisoning, except everyone ate dinner, and only 3 of us got ill. I was hoping to feel better today so I could finish the last minute packing, etc, but I actually feel pretty darn icky. I know by tomorrow it will be gone. My wonderful hubby had my dad come take all the healthy kids to his house, and made the rest of us sicko's soup. I'm in bed...while DH deals with the other two. Actually, it isn't so bad. I have not had this much sleep in years, and I have not done one productive thing all day, and I don't care! I'm going to watch the Princess Bride, then take some NyQuil and call it a night. Tomorrow is our last day in town which means all the bed making, laundry folding, fridge cleaning is naturally left for tomorrow. I've decided that God blessed me with teen-agers just for this reason, and am doling out their to-do lists tomorrow. Tomorrow will be the last post until we get back...can you believe it already time?

 

[snowwhitesmom]

Y'all get better quickly!

 

[cantwaittoseemickey]

The nurs said something about "granulated tissue" and that if the injections of antibiotics don't help to ask to have the spot cauterized...ever heard of this? Did Ty's get infected more than once? I thought maybe because it's new...do you think the Mickey gets infected as easy?
OK so you said if I had any questions to ask!!!

Granulated tissue is our enemy when it appears.And that is always our goal is to keep it away. The less Ty's leaks around it the less tissue he has. He has had it cauterized a few times when he was having problems with infections when the gran tissue was so bad. It is a q-tip that has this stuff on it that basically burns away the gran tissue. It wasn't too painful for Ty if his stoma wasnt hurting but if his stoma was already hurting then it was uncomfortable.


When Ty first got his gtube(it was called a malecot) within the first 2 weeks it had come out only we didnt know it. We knew something was wrong and he was hurting somewhere but the surgeons we had didn't even care to take the bandages off to look at it. After about the 4th trip there I had had enough and called the ped from the elevator. He had us just stay there and ordered a gtube scan where they put barium through the tube and see if it is in the right place. While we were there we got the call to go straight back up to the surgeons office where he FINALLY took the dressing off and the thing was half way outHe put a catheter in for a few more weeks until he got the mickey and unfortunately had left him with a very nasty infection. He had MRSA several times and was in and out of the hospital on iv antibiotics until they had to pull the mickey to let it heal and start all over. He also ended up having a tunnel called a fistula so they closed that up. The gi gave him a trial off of the tube but it didnt work so he had the mickey put back in 6mos later. He has had a few infections since then but nothing like he had before. It was a hard road that he went through but it is because of the surgeon not listening to us that something was wrong. But please do not let this scare you. This was our experience. The second time a different surgeon did it and it was a peg tube which was awsome. Then he got his mickey and he has had a few infections but he is prone to infections and always has been since he was very little. We are very cautious with him and at the first thought of an infection we get it cultured at the ped.

His Mickey has been alot easier on the infections. I am going to pm you also.

Anything i can ever do to help questions or anything just let me know

 

[noahsketomom]

All I can think is better now than next week!! But sorry that it had to happen at all!

Hope you guys get better ..... and soon!!

Safe travels --- HAVE AN AWESOME, AWESOME trip!!!

 

[pnutallergymom]

Hi Amber,

Sorry James is having trouble with his tube. Brigitte had a TON of granulation tissue for a Loooooong time when she first had her tube placed.

We found the best thing was to leave it completely uncovered. We didn't use gauze under the tube at all...found it more irritating. Although I did tape the button to her skin so that it wouldn't move. The movement was what was really aggravating her skin. We did have to cauterize quite a bit to get it under control. The one thing I SWEAR by is called Baby Ease http://www.babyease.us/products/lotions.html After cauterizing her site (I used to do it at home) I would lather her site with this stuff...it is amazing!!! The other thing the doctor might recommend is triamcinolone cream....we found this helpful, but the baby ease was better.
Anytime her site gets a little red (especially after a mic-key change) we use the baby ease and it is perfect in a day. I have had the GI nurses and doctors ask me if it is ok to have parents call me about tube issues because Brigitte's site is the best they have ever seen!!! It is very painful. I'm sorry James is having to deal with this.


On a good news front......4 more days!!!! Are you super excited?????

 

[alaskanabbott]

we are feeling pretty good!!!
I woke up and while I'm not 100%, I'd say I'm at least 75%...so I guess it's time to finish the packing
Elijah is much better today too, you know how kids are, they bounce much better than we do.
My hubby on his way out the door this morning told me how excited he is about the trip...yay for happy hubby's
I went and got a trim, and am going to get my nails done this afternoon. I wanted to finish packing first
Other than that, our wish place called and asked if it would be ok for the news to cover our going away dinner Sunday night, so the kids are all excited that they may be on tv. If it is on the news, I'll send a link so you can check it out. We also found out how much our expense check is and we are so blown away by the generousness of it all. Apparently a board member added to it, and the president asked for a little extra too. I said thank-you about a hundred times, but the words just don't seem to cover how thankful we are...not just the expense check, or the trip, but how wonderful they have been. I feel like the wish co-ordinator is now a part of our family, he is so loving and helpful.
I'm not sure about posting later today, we leave in the morning for Anchorage, then have Macylea's wrestling tourny, then are staying at a hotel. We have the going away dinner at 6pm Sunday, then on our way to the airport.

 

[Mtopher4]

Amber.. I'm so glad you all are doing better.

Your so close..I can taste it

I can't wait to see pics and how exciting you may be on TV

Have fun packing

 

[pipersmom]

I am so happy everything has come together so well for your trip, I know you guys are going to have a blast! Hooray for a great expense check!! If I don't see you tomorrow...

HAVE A WONDERFUL TRIP!!!!!

 

[Maryrn11168]

Have a great trip
Here is a little pixie dust to help you feel better

 

[kellyw8863]

Ali's doctors always ask us how we keep her site looking so good and I'm almost embarrassed to respond, "Nothing. We do absolutely nothing." Usually, I don't even clean it unless she's in the tub. If it does need to be cleaned, I just use plain water and a piece of gauze. Then, I leave it uncovered. And while we've had some issues with yeast, she's never had granulation tissue or an infection. I think the key with the PEG is to keep it secured so that it's not moving around. And, make sure that it's not pulled too firmly to the side. After we taped it to her belly, we used to cover everything with something called Spandage.

I'd cut off a piece about seven inches long and then just pull it up to her waist and tuck the tubing inside so it wouldn't flop around or get caught on something.

I hope you're feeling better - only a couple of more days!

 

[Momofwishkid]

Just wanted to pop in and say hope your all feeling better and Have a Blast on your trip!!

 

[cantwaittoseemickey]

Just wanted to say HAVE A GREAT TRIP

 

[yinyanggirls]

Bummer, I somehow missed the last few days on here. I can't believe you got the flu right before you were to leave! (I got a *possible* pneumonia diagnosis today and one of my first thoughts was, well as long as it's gone before our trip!)

How awesome that your chapter just went above and beyond for your check. It helps reduce that stress level I'm sure! Hope you guys are having a blast!

 

[The Lurker]

I was lucky again today and got to see James and his family this morning at GKTW. The had a rather long and "interesting" trip (I will let her share the details about the interesting part with you), but when I saw them they assured me all was well and there are having a wonderful time. They are another wonderful family.

Katie

 

[cantwaittoseemickey]

Oh I hope they are having a great time. It is so neat how all of these families are getting to meet people from the dis boards. I hope everything went ok with your trip there!

Hope you are all having a great time! I can't wait to read your trip report!!

 

[cajunfan]

I missed saying HAVE A GREAT TRIP!

Well, I hope that everyone is having a great time! I can't wait to hear all about it.

Lynn

 

[maroo]

I was lucky again today and got to see James and his family this morning at GKTW. The had a rather long and "interesting" trip (I will let her share the details about the interesting part with you), but when I saw them they assured me all was well and there are having a wonderful time. They are another wonderful family.

Katie

And Katie...I need to meet you!

PM me!