Ty-bugs MAW pre-trip to ride Jaws and go to Disney! July 10-16 2010

[cantwaittoseemickey]

When Ty had the muscle biopsy done, did they send it out for the ETC testing, or did they just run it through pathology? Ali's pathology report was "mostly" normal, too. She had some abnormal aggregates of normal appearing mitochondria, and if we didn't do the ETC testing, it would have been dismissed. But, the ETC was very abnormal. That plus significantly increased alanine pretty much sealed the deal, but then her genetic testing came back with a specific mutation, so we know it's primary. For Ali's constipation, we do bisacodyl and Go-Lytely, though we know we're looking at an ostomy in her relatively near future. We can't keep doing Go-Lytely on a continuous basis because it messes with her electrolytes. We're just trying to put off an ostomy until she can help care for it. Supposedly it has something to do with higher patient satisfaction.

Ty's biopsy says Right calf muscle, open biopsy: Partial atrophy of type I myofibers,rare.The neuro said that was nothing and it was normal.The ETC says everything was in the control range. All of his genetic testing this far has either came out normal or it is non specific.

I completely understand about the go-lytely and electrolytes. The amount of laxitives Ty is on has me a bit concerned. It just seems like his motility is getting slower. Yesterday he was bubbly with energy today he is back to being pale with circles under his eyes. I just don't get it
I think I need to talk to the ped about an order for sick labs.

 

[jenb1023]

Love seeing that smile! I am glad Goofy sent him a post card! Good luck with the appointments - it sounds like they are going to be tough and may lead to needing to make some tough decisions.

 

[cantwaittoseemickey]

Love seeing that smile! I am glad Goofy sent him a post card! Good luck with the appointments - it sounds like they are going to be tough and may lead to needing to make some tough decisions.

Isn't that the greatest smile!Dont see it too often right now but I know soon there will be lots more

 

[cantwaittoseemickey]

I bought some goodies for the kids and myself. Here are some pics

Tyler with his brand new Scooby Doo Towel

Sierra with her brand new Tinker Bell Towel

and Tonya (me) with my new Mickey Mouse Towel

Tomarrow Ty see's the Gi so I will post when we get home. It is going to be a very busy day as I need to take Sierra into our peds walk in hours as she hasnt been doing the greatest either. So we will see what they say. Hopefully have some help with Ty's motility problems that seem to be getting worse.

 

[Momofwishkid]

Im so sorry Ty is having a hard time. I hope you can get some answers at his appointment tomorrow.

 

[Mtopher4]

Hi I'm subscribing

Love the big smiles. I'm sorry he keeps getting so uncomfortable

What is a fairygodmailer?

 

[cantwaittoseemickey]

The gi has come up with a "plan". He is increasing one of his constipation meds. The fact that he is on constipation causing meds for his bladder and he is low toned is working against him. Also he is increasing his water intake. His weight is down again so he is increasing his formula and he is changing it to something without fiber as right now it is working against him till we get him "over the hump". Once we do that we will revisit the fiber. He said he cannot keep going like this. His intestines will stretch and kink and cause some big problems if we dont get it under control. He was born with a malrotation that was repaired at 5 weeks old so he is at increased risk.

He did get outside and play last night and that is great to see. Tomarrow he goes in for his veeg then Friday is a big day for urology apts. Then weve got this week down whew!!

 

[noahsketomom]

Tonya,
I'm sorry for the recent problems, but I hope they are short lived! I'm glad the GI is on it and hopefully the changes will resolve the constipation!

I'll be praying for the rest of your week! Does Ty deal okay with the VEEG? Is it portable or does he have to stay attached to the wall? They are hoping to move to portable units at our hospital, but haven't yet. It would've been helpful this summer when Noah was hooked up for the better part of 4 weeks!

Hoping the rest of the week goes as smoothly as it can!

Best,

 

[cantwaittoseemickey]

Hi I'm subscribing

Love the big smiles. I'm sorry he keeps getting so uncomfortable

What is a fairygodmailer?

Welcome to Ty's ptr.

Hopefully we are on a good path now to keeping him painfree. It will take a while but the gi said he thinks our new plan will help.

I do believe a fairygodmailer is when someone on the boards goes to WDW they will send a postcard from one of the characters if you request it.

 

[pnutallergymom]

Hey Tonya,

Just wanted to let you know I am still here following along!!!

Brigitte had a malrotation too. It was found 6wks after her first open heart surgery. She had surgery to correct it and had part of her intestine removed. She has had horrible constipation since birth. She is averaging about every 11 days or so with a BM......not fun. We got a referral to urology yesterday too!!!

Hope you guys are feeling better soon.

 

[pipersmom]

Hey Tonya! Just peeping in once more before we go! Keeping you guys in my thoughts for the veeg and uro appts, hopefully they'll be able to figure something out. Love the beach towels..very cool!

 

[Momofwishkid]

Hi Tonya, just wanted to say you and Ty will be in my thoughts with all his appointments this week. I really hope they have some answers for you.

 

[cantwaittoseemickey]

Tonya,
I'm sorry for the recent problems, but I hope they are short lived! I'm glad the GI is on it and hopefully the changes will resolve the constipation!

I'll be praying for the rest of your week! Does Ty deal okay with the VEEG? Is it portable or does he have to stay attached to the wall? They are hoping to move to portable units at our hospital, but haven't yet. It would've been helpful this summer when Noah was hooked up for the better part of 4 weeks!

Hoping the rest of the week goes as smoothly as it can!

Best,

He does "ok" once we get past the glue. It sends him into a rage that I do not like to see. The last one I walked out crying. He was in for a week with that one. I can't imagine 4 weeks in that room We do not have the portable units unless they have gotten them since last May.But I do not believe they do. I usually take a ball to play with in the room so we can do something that wears him out. Although the last time they wanted a sleep deprived veeg and they got it. He didnt go to sleep till after like 6am. My kid was peddaling an excersise bike at 4am They brought all kinds of things to keep him busy lol.

 

[cantwaittoseemickey]

Hey Tonya,

Just wanted to let you know I am still here following along!!!

Brigitte had a malrotation too. It was found 6wks after her first open heart surgery. She had surgery to correct it and had part of her intestine removed. She has had horrible constipation since birth. She is averaging about every 11 days or so with a BM......not fun. We got a referral to urology yesterday too!!!

Hope you guys are feeling better soon.

Thankfully they did not have to take out part of Ty's intestine but it sure left him with horrible constipation. We ended up back inpatient for another week the day after he was released just because he was so backed up. 11days Bless her heart! Ty is going once a week and he gets miserable. But even when he is going that one time he is not entirely getting cleaned out. I hope she is ok Urology wise. Bless her heart. She doesnt need that added on

 

[cantwaittoseemickey]

Hey Tonya! Just peeping in once more before we go! Keeping you guys in my thoughts for the veeg and uro appts, hopefully they'll be able to figure something out. Love the beach towels..very cool!

Thank you Amanda! I hope you and Piper aren't in Club med too long! Thinking of you both. I hope she feels better soon.

 

[cantwaittoseemickey]

Hi Tonya, just wanted to say you and Ty will be in my thoughts with all his appointments this week. I really hope they have some answers for you.

Thank you Jennifer!



Sorry I did the posts the hard way. Still dont know how to mulitquote

 

[kdzbear]

I am back on board and following along again!

 

[Mtopher4]

I hope the Dr. has him going in a positive direction now. malrotation's are common with Ashley's syndrome too but that's one of the things she didn't have... ((((Hugs))))

 

[kellyw8863]

Think of you as the week and Ty's appointments are wrapping up.

 

[cantwaittoseemickey]

I am back on board and following along again!

Thank you for finding us again