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

[Mom2mitokids]

Will my friend is gone but now in hospital with Kylee. Back in for her stomach... Or I should say a cleanout. We are in a hospital that has a motility specialist. For those know So Cal we are at CHOC. Right by Disneyland.

 

[cantwaittoseemickey]

I'm so sorry to hear this Kris. We are thinking of you and Kylee. Hugs!

 

[J'sMum]

Aww durn, Hope you guys are home very soon, saying prayer for you and kylee

 

[Mom2mitokids]

We are home. Nine days without internet was torture. This admission was really hard on Kylee. She was poked so many time because her IVs kept blowing or they would get it in just to blow right away. She was on TPN for 12 hours until that one blew. They tried to put a PICC line in at bedside without sedation( just numbing meds from the J tip), but that failed. That was the worse 45min of my life. I will never do that again. Tuesday she had surgery for an Endoscopy, Colonoscopy, and placements of the probes for the Manometry test. She gave me a huge scare when she was in PACU. first her heart rate kept dropping in the 40s so they gave her meds to bring it up. Than she wouldn't wake up. She wouldn't do any commmands. I would grab her arm and she would stiff them up and she was shaking. Almost like a seizure. Finally after 2 1/2 hours she woke up. We went back to her room to start the Colonic Manomentry(To see how well her colon works). That came out normal. Wedensday was the second part. This was the Antroduodenal Manomentry( to see how the stomach and small bowel works). This also came out normal. What this means...I have no clue. We still don't have answers to why she gets these stomach pains and can't have a BM.
All the doctors saw the pain she gets. Saturday was really bad. She was even vomiting and had to get some morphine for the pain. Tomorrow she has a Ped appt, so we will see what she says. We know she is completely cleanout, so hopefully she will stay that way.

 

[that's nice]

Glad you guys are home but man.. that didn't sound like a 'fun' stay.

I'm glad everything is normal but that doesn't do much for giving you any answer to what has been going on.

 

[kdzbear]

I am so sorry that both of you had to go through all of that. I hope the doctors are able to find some answers soon. I am glad that you both are back home!

 

[Mom2mitokids]

Posting an update on Korissa. She is doing really well. She has been in school for a month and not a sickie yet. She has her Geneticist appt coming up and then her GI. I can't wait to see what her Mito doctor has to say. She is still suffering from her reflux and fatigue issues. I'm going to be changing doctors at the beginning of next month. Finally found an awesome doctor(Ped) that knows what she is doing. I would do it this month, but then it messes up her other appts and her Mito doctor is running a year in appt scheduling...nuts

 

[Mom2mitokids]

I am so sorry that both of you had to go through all of that. I hope the doctors are able to find some answers soon. I am glad that you both are back home!

Thank you

Glad you guys are home but man.. that didn't sound like a 'fun' stay.

I'm glad everything is normal but that doesn't do much for giving you any answer to what has been going on.

Thank you Tim...I have been speaking to many other Mito moms and they also have had normal test, but still has Motility issues. Makes me feel a little better.

 

[Woth2982]

Im so sorry Kylee is not feeling well and having so many issues. Poor thing. Hope she is feeling better soon! I know how it feels to have to be poked a million times for IVs. Glad Korissa is doing well! Hope it is a good healthy year for her!

 

[billwendy]

WOW - your kids are Stars!!!!!!

 

[Mom2mitokids]

Im so sorry Kylee is not feeling well and having so many issues. Poor thing. Hope she is feeling better soon! I know how it feels to have to be poked a million times for IVs. Glad Korissa is doing well! Hope it is a good healthy year for her!

Thank you She is actually feeling better. I love seeing her like this

 

[Mom2mitokids]

WOW - your kids are Stars!!!!!!

Thank you Wendy. Kyra wants to be a star She had a ball doing it

 

[hgpiglet]

Kris I'm so glad that you and Kylee are home and that Korisa hasn't gotten sick yet this year!

Still waiting to hear about Katlyn, I have to make some phone calls tomorrow.

 

[Mom2mitokids]

Kris I'm so glad that you and Kylee are home and that Korisa hasn't gotten sick yet this year!

Still waiting to hear about Katlyn, I have to make some phone calls tomorrow.

Heather...did you call yet? I would start with the Neuro first. Frustrating...This happened with Kylee's too.

 

[cantwaittoseemickey]

I'm glad to hear Kylee is home. I'm sorry they tried to put a picc line in without sedation. Bless her heart! It's great to hear korissa is doing well!

 

[Glo's wish]

I thought I had subbed to your PTR but apparently not. I'm glad your daughter is feeling better! I look forward to more updates.

 

[Mom2mitokids]

I thought I had subbed to your PTR but apparently not. I'm glad your daughter is feeling better! I look forward to more updates.

Thank you for subbing

 

[Mom2mitokids]

I'm glad to hear Kylee is home. I'm sorry they tried to put a picc line in without sedation. Bless her heart! It's great to hear korissa is doing well![/

Thank you Tonya It was the hardest 45 min. of my life. I will never do that again.

 

[cantwaittoseemickey]

 

[kissesbykim]

Wow! You are a strong mama and your kids are fighters! Can't wait to read the rest of your PTR!