Korissa's Magical MAW/GKTW PTR....4 HUGE Big Give (2-18-11)..page 40

[that's nice]

Does your MAW have events every week? Love the pics! More ice cream pics too! MMMMMM

Over 2 hours for the girls doctor appointment... sounds about right! I'm glad you were able to get some of your questions answered. I don't understand Mito all too well but it seems like the doctor is on top of what is going on.

 

[cantwaittoseemickey]

Wow I am amazed at all your MAW chapter does. That is awsome!!!

The more I hear about Mito the more it tugs at my heart for Ty. He has so much of the same problems but his mb was normal (or didn't make sense really) so they have dismissed it.


Anyhoo just wanted to send you and the girls hugs

 

[Mom2mitokids]

Wow I am amazed at all your MAW chapter does. That is awsome!!!

The more I hear about Mito the more it tugs at my heart for Ty. He has so much of the same problems but his mb was normal (or didn't make sense really) so they have dismissed it.


Anyhoo just wanted to send you and the girls hugs

What did Tys ETC say? Kylees muscle part said normal but it was the ETC that showed the defects in complex III and IV. Can you go for a second opinion?

 

[Mom2mitokids]

Does your MAW have events every week? Love the pics! More ice cream pics too! MMMMMM

Over 2 hours for the girls doctor appointment... sounds about right! I'm glad you were able to get some of your questions answered. I don't understand Mito all too well but it seems like the doctor is on top of what is going on.

L.A. Chapter is huge so they need to do alot of fundraising. We feel we need to do what we can to help with the fundraising, so we always put us out there if they need us. Gives us piece that we are giving back..plus it's fun. Some perks to go with it too. We had someone make Kylee a creative memory scrapbook from her trip to Florida. This scrap book is amazing. All we did was go to this creative memory fundraiser for MAW and she volunteered to make us a book.

On the Mito...Not to many people know about Mito, but than more kids die from Mito than cancer. This is why I try to get the awareness out there. Unfortunately not a lot of funds out there to find a cure. They just need to find a cure for all of these horrible illnesses these kids has to face that they shouldn't have to face.

 

[Mom2mitokids]

Ugh...Korissa is really struggling right now with her reflux. It has started about a week ago. We upped her Prilosec to 2x a day and so far it's not working. I get Kylee stable and now Korissa is struggling. The reflux is also effecting her sinuses and asthma.

 

[Mom2mitokids]

Oh...I think Kylee has J tube infection. Anyone..an expert at this? Thankfully we don't deal with lots of infections.

This was tonight..It's more red than brown. Bad camera light.

This afternoon

 

[that's nice]

I'm thinking that doesn't look all that good. Is she uncomfortable? Can she wait till morning to go to the doctor?

 

[fulseasmama]

I am not in any way an expert but my daughter did have a Hickman line on her chest during treatment and when we were trained to care for it we were told to watch it and to let them know if it seemed to get red or warm to the touch as it could be a sign of infection. I would certainly touch base with her doctor. I am so sorry she and you as her mama have to go through this. I will be thinking of Kylee and Korissa. Take care.

 

[Haybuggsmom]

Oh...I think Kylee has J tube infection. Anyone..an expert at this? Thankfully we don't deal with lots of infections.

This was tonight..It's more red than brown. Bad camera light.

This afternoon

I'm no doctor but Haylee does get somehting that looks like that also sometimes. I use a barrier ointment until it heals. Something like a vasonine. Then I also let it get some air.
Seeing a lot of gtubes you are doing a great job. It looks good!

 

[Glo's wish]

I'm no doctor but Haylee does get somehting that looks like that also sometimes. I use a barrier ointment until it heals. Something like a vasonine. Then I also let it get some air.
Seeing a lot of gtubes you are doing a great job. It looks good!

I'm definately not a dr either, but if this is unusual for her I;d get it checked. With that said, Glo has issues like this when her reflux is bad and she gags a lot causing increased drainage around the tube. I usually put some triple antibiotic cream on split gauze and put it around her tube. I hope she feels better soon!!

 

[Mom2mitokids]

I'm thinking that doesn't look all that good. Is she uncomfortable? Can she wait till morning to go to the doctor?

Thank you Tim. I did call the Ped this morning.

I am not in any way an expert but my daughter did have a Hickman line on her chest during treatment and when we were trained to care for it we were told to watch it and to let them know if it seemed to get red or warm to the touch as it could be a sign of infection. I would certainly touch base with her doctor. I am so sorry she and you as her mama have to go through this. I will be thinking of Kylee and Korissa. Take care.

Thank you for replying. It's not warm to the touch, but red. It also hurts when I touch it.

I'm no doctor but Haylee does get somehting that looks like that also sometimes. I use a barrier ointment until it heals. Something like a vasonine. Then I also let it get some air.
Seeing a lot of gtubes you are doing a great job. It looks good!

Thank you for replying. I have some barrior cream that I will put on it. Her G tube never has issues, but I think because her J tube leaks a lot..it's causing irritation on her skin.

I'm definately not a dr either, but if this is unusual for her I;d get it checked. With that said, Glo has issues like this when her reflux is bad and she gags a lot causing increased drainage around the tube. I usually put some triple antibiotic cream on split gauze and put it around her tube. I hope she feels better soon!!

Thank you for replying. She does leak a lot out of her J tube. We are waiting for her new size Mic-Key button to come in. Right now it's a size 14f 1.5cm, so we are going to try a 14f 1.2cm to see if the leaking stops.

 

[Mom2mitokids]

Thank you for all the replys. I called the Ped this morning and she said as long as it doesn't get any worse we can wait until Monday when Kylee has an appt with the GI. I didn't want to keep her home from school as she has already missed 12 days of school and she's only been in school for 2 months. The Ped told me to keep an eye out for fevers and if she gets one to go straight to ER. Oh...and I can put a barrior cream on it so when she does leak it won't burn the skin.
If you can see from pictures the J button is too big, so we are waiting for HHC to send out a smaller mic-key button size. I am also waiting for insurance to approve the AMT mini one non balloon for her G tube. Her stomach does not like balloons. She had the AMT, but when they did her Motility testing they had to take it out and then couldn't put it back in. Now she is in daily pain from the tube sucking in. Kylee has an appt with the surgeon on the 22nd to change out both tubes.

 

[blessedmom4]

Hi Kris,

Thanks for stopping by Lisa’s PTR. We are VERY excited and Happy, as I know you are as well! Is the planning any easier since you have already been on a MAW trip?

I don’t know how you find time to sign in. As you know, 2 of mine have major health challenges as well and I rarely have time to check in, especially these days (our computer has been down much too long and I can’t always find one to use. That being said, I DO know that it can be a source of comfort to write about what is going on with my sweeties and providing support to others. It is cheaper than therapy I always say.

I am happy you will get the J-tube checked out tomorrow, it might just need some antibiotic ointment (I always love a quick fix) or a barrier ointment, as other have stated. I am SO sorry to read Kylee is in pain, poor sweetie!

I sympathize with getting one child stable and something popping up with the other one…in fact, the hematologist said the exact same thing to me on Friday. I told her I would rather to NEVER have problems; however, IF we had to deal with major stuff, one at a time WAS easier!

Hoping you have a blessed Sunday!

Judy

 

[Mom2mitokids]

Hi Kris,

Thanks for stopping by Lisa’s PTR. We are VERY excited and Happy, as I know you are as well! Is the planning any easier since you have already been on a MAW trip?

I don’t know how you find time to sign in. As you know, 2 of mine have major health challenges as well and I rarely have time to check in, especially these days (our computer has been down much too long and I can’t always find one to use. That being said, I DO know that it can be a source of comfort to write about what is going on with my sweeties and providing support to others. It is cheaper than therapy I always say.

I am happy you will get the J-tube checked out tomorrow, it might just need some antibiotic ointment (I always love a quick fix) or a barrier ointment, as other have stated. I am SO sorry to read Kylee is in pain, poor sweetie!

I sympathize with getting one child stable and something popping up with the other one…in fact, the hematologist said the exact same thing to me on Friday. I told her I would rather to NEVER have problems; however, IF we had to deal with major stuff, one at a time WAS easier!

Hoping you have a blessed Sunday!

Judy

Thank you Judy for coming by. It's always something going on here. Having 5 kids with some medical issues(2 of them a lot going on) keeps me going. Along with all my issues. My computer time is when the kids are in school and weekends. This is my therapy. My time is spent on this board, FB, and my medical message board. I have met so many people and well...just nice to talk with other parents dealing with medical need kids. My regular friend understand, but they don't walk in our everyday life. I love seeing these kids smile when they are opening their Big Give gifts and love to see pictures of all the kiddos. So many amazing people here.
Do you have any idea when you want to go? Oh...It's a little easier being the fact that I know what to expect, but still exciting. I didn't know about this board with kylee and now we know we missed alot of things. I'm more nervous because Kylee has more equipment than last time and I'm not the same. I just hope I can do all the walking. Thankfully for this board...I know it can get done. I know know to talk all our Meds as a carryon...and well...just being on this board makes this trip more special.

 

[fulseasmama]

Just checking in to see how your girls are doing. Hope everyone is doing better.

Take Care

 

[Mom2mitokids]

Korissa and Kylee had their GI appt on Monday. Korissa has be suffering from her reflux a lot. They can't up her Prilosec(sp) anymore. When we were at her Mito appt Korissa told him that she hasn't been regular in the BM department, so he wanted us to talk to GI about putting her on Miralax. This weekend she has been having the opposite problem. The GI is wondering if she is really backed up(the runs is the stuff that is going around the blocked BM) causing the reflux to become out of control. The GI ordered a KUB...which she done yesterday. I didn't get a call today , so I will be calling tomorrow. They are also thinking of doing a delayed Gastric Emptying Scan to see how fast food moves out of her stomach.

Kylee...I think we are finally going to get the GI, Mito, and Surgeon together and do a team meeting. The GI is tired of one person saying this and that and they need to come up with a plan together. The GI mentioned the "S" word, but we don't want her to have another surgery. She has had so many I lost track(I think 12). Plus she already has 2 tubes in her stomach..I don't want her to have 3. This is why we need a team meeting. The are putting her on Prevacid because of her Hital Hernia. Oh another reason for the team meeting is because Mito Doctor wants her to be on a medicine for her Pseudo- Obstruction, but the GI has never heard of this Med, so they can't prescribe it. No clue why Mito doctor can't do it. After the doctors left...we talked with the nutritionist. She wrote down everything she gets a day(food and formula) and is going to add things up and is suppose to call us with results. I forgot to say that she weighed in at 38 lbs and is 45in. I guess that's it...Next appt...Kylee's Surgeon appt. on the 22nd.

 

[that's nice]

Wow... what a day! I think that getting all the doctors on the same page is a good idea- and it only makes sense.

I am so sorry your girls have to go through all this.

 

[cantwaittoseemickey]

How is Kylee's J tube doing? Is it still red? I hope it's looking better. ((hugs)) I hope the miralax helps Korrisa.

His ETC was normal. We went to Dr. C in Cleveland for a second opinion and he just looked at the report and said it was normal. Whatever bloodwork is usually off is abnormal but still considered normal which leads to more questions and no answers. But yet we still have all the symptoms + other things popping up. Dr. C ran a ton of bloodwork.

 

[blessedmom4]

Just wanted to stop by and say hi and let you know I am praying things are MUCH better on all fronts!

Blessings,
Judy

 

[Mom2mitokids]

Just wanted to stop by and say hi and let you know I am praying things are MUCH better on all fronts!

Blessings,
Judy

Thank you Judy. So far...everything is going ok. Just been really busy. I hope Lisa is doing well.