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

[miprender]

I found your thread through the BigGive and I just read your whole PTR and so sad what you and your family has to go through

 

[cantwaittoseemickey]

How about the colorectal team too? Maybe get a consult with them while you are here. Dr Levitt is wonderful. They have a bowel management program where they can prescribe a daily regimen. They will take xrays daily to see what works best for her.

Ty is hanging in there. Alot of pain today. But he has also sat up in a chair more today so he is making progress I can't wait till he can get off the morphine. It makes him pretty grumpy and the halucinations are awful.

 

[xanphylus]

Wahoo!!!! You got a Big Give!!! Wish I could help out with this one, but until income taxes come in- we can hardly deal with the bills, much less my desire to give all my husband's income away. I doing the Gives, it makes my heart happy- and I know that's why I have not been hanging out as much on the dis lately..... because I know I can't do anything. But our time is coming. I wish I could sew still.... maybe one day I will be able to get my machine fixed and learn! I would love to be able to make some of the great stuff I see all the disers make! My kids would flip too- Hope you get some great stuff!!!! And I told you- we all lurk. lol

 

[Mom2mitokids]

Wahoo!!!! You got a Big Give!!! Wish I could help out with this one, but until income taxes come in- we can hardly deal with the bills, much less my desire to give all my husband's income away. I doing the Gives, it makes my heart happy- and I know that's why I have not been hanging out as much on the dis lately..... because I know I can't do anything. But our time is coming. I wish I could sew still.... maybe one day I will be able to get my machine fixed and learn! I would love to be able to make some of the great stuff I see all the disers make! My kids would flip too- Hope you get some great stuff!!!! And I told you- we all lurk. lol

Thank you. Just coming here is good enough. That means a lot to me. ((hugs))

 

[Mom2mitokids]

I found your thread through the BigGive and I just read your whole PTR and so sad what you and your family has to go through

Thank you for coming by and reading Korissa's PTR. ((hugs))

 

[blessedmom4]

Prayers that tomorrow goes better than expected and that a solution can be found to help your Pretty Princess!

 

[Mom2mitokids]

How about the colorectal team too? Maybe get a consult with them while you are here. Dr Levitt is wonderful. They have a bowel management program where they can prescribe a daily regimen. They will take xrays daily to see what works best for her.

Ty is hanging in there. Alot of pain today. But he has also sat up in a chair more today so he is making progress I can't wait till he can get off the morphine. It makes him pretty grumpy and the halucinations are awful.

I will see what medicaid will pay. We really need another opinion.
Sorry to hear that Ty was in pain today. hopefully tomorrow will be better.

 

[Mom2mitokids]

Now we get it compounded into a syrup, but before that, we used to give it to her in pill form. The pills are tiny, tiny, and once you figure out exactly how to do it, they split pretty easily. Crushing them still works (that's how they gave it to her during her colonic manometry), but it causes a lot of cramping. The syrup is great because it makes it so easy to adjust the dose.

Does Kylee have a tethered cord? Or would this be an initial spinal MRI? The thing that stinks about mito is everyone wants to attribute everything to the mito. We were flat out told that kids with birth defects do not have mito (and vice versa), which is why it took us so long to get a diagnosis. I would think that if Ali had the mito dx before the other things were dx'd, they never would have found her laryngeal cleft, tc, etc. Ali is a patient in the motility program at Children's Hospital Boston, but I have heard good things about Cincy, too.

I wrote the name and it's packed in suitcase.
Remember you told me to check into the tether cord? I just think it's something to look into. I agree with Mito being attributed to Mito. Ali and 2 other kids I know with Mito has the tethered cord.
I would actually love to see Boston but in Summer..lol. Not sure how you all deal with the cold.

 

[Mom2mitokids]

Prayers that tomorrow goes better than expected and that a solution can be found to help your Pretty Princess!

Thank you Judy. Going to be a long day. She just laid around all day. You could tell she did not feel well.

 

[p00h4me]

Hi Kris,

I'm following along with your PTR! I just PM'd you. Let me know what you think.

Hope things go well with Kylee and the doctors will be able to figure out what medication her body needs!

 

[Mom2mitokids]

Hi Kris,

I'm following along with your PTR! I just PM'd you. Let me know what you think.

Hope things go well with Kylee and the doctors will be able to figure out what medication her body needs!

Thank you Gail I Pmed you back,

Just waiting for the GI to call me back and hopefully they can do a direct admit. Leaving in a few for her eye appt.

 

[Mom2Miracles]

How did things go today? Been thinking about you guys. *hugs*

 

[MitoDadMO]

Looks like GKTW will have their hands full with Mito Kids. Looks like we will be there the same time as you guys!!!

 

[Mom2mitokids]

Looks like GKTW will have their hands full with Mito Kids. Looks like we will be there the same time as you guys!!!

Yeah on dates!!!! It's alway nice to meet another Mito family.

 

[Mom2mitokids]

We are here at the hospital. Thankfully we had a direct admit and didn't have to go through ER. We are here for a clean out, but unfortunately Kylee caught some bug and now has a 102 fever. She just looks so pitiful. Just praying this is not a long stay like the last time. Tomorrow she will get her PICC line.

 

[Mom2mitokids]

How did things go today? Been thinking about you guys. *hugs*

Thank you Kristy. Posted an update.

 

[that's nice]

We are here at the hospital. Thankfully we had a direct admit and didn't have to go through ER. We are here for a clean out, but unfortunately Kylee caught some bug and now has a 102 fever. She just looks so pitiful. Just praying this is not a long stay like the last time. Tomorrow she will get her PICC line.

Oh no, not again. I hope you guys are out of there quick. I'll keep her (and you too) in my prayers.

 

[mommy2mrb]

Thank you Lisa for coming by. I can't say enough how special all you ladies are. What you all do to make a family feel special.

well, you and all the MAW families deserve any happiness we can bring to you....besides, I'm selfish, its brings me lots of happiness too!

We are here at the hospital. Thankfully we had a direct admit and didn't have to go through ER. We are here for a clean out, but unfortunately Kylee caught some bug and now has a 102 fever. She just looks so pitiful. Just praying this is not a long stay like the last time. Tomorrow she will get her PICC line.

hope they can get her comfortable and home soon , sending extra dose of pixie dust and prayers

 

[wishin' on a star]

I hope the stay is short, the cleanout goes okay, and the fever doesn't last long!! Prayers being said for you guys.

 

[miprender]

We are here at the hospital. Thankfully we had a direct admit and didn't have to go through ER. We are here for a clean out, but unfortunately Kylee caught some bug and now has a 102 fever. She just looks so pitiful. Just praying this is not a long stay like the last time. Tomorrow she will get her PICC line.

Hoping for a quick recovery.