Re: Audrey going to hospital

[Guest guest]

Kathy,

You can definately count on my prayers for Audrey. I hope that her stay goes well and they can help get to the bottom of her pain. It sounds like they have great arrangements for the family to stay. I know that makes hospital visits so much more pleasant. Update us when you can.

Blessings,

[Guest guest]

I hope the stay is short and they are able to better control the pain for her. You are all in our prayers.

Holly

[Guest guest]

Hope you guys get some answers.

love and hailee

Audrey going to hospital

Hi all, First we would like to thank everyone for all of the wonderful Birthday wishes for Audrey, I have copied them and am going to give them to Amie to put in Audrey's keepsake book. It is so wonderful to know that so many people are thinking of her.Now, on to other important issues. Audrey is being admitted today at 3:00p.m. to St. Louis. Cardinal Children's Hospital for further testing and work-up about her pain and reflux. We are not sure if the Nissen is still a consideration for her or not. She does need her G-tube replaced and we diffenitely need to find out what is causing her so much pain. We are sure it is that the reflux has gotten so much worse and the meds don't seem to be working anymore. The docs have mentioned putting her on morphine but with her irregular breathing pattern, that is a rather scary possibility. Of course, what isn't scary when it comes to Mito?We will be leaving about 12:30 to head up there but I am planning to come back tonight and go back up tomorrow morning. Amie and Doyle of course will be staying with her. The part of the hospital where she will be is all new and they are all what they call family rooms so they will get to stay right with her. I will try to keep you all updated as I find out things. Please, if I may ask, that once again you all say an extra pray for Audrey and all of us. You are all an amazing group of people.Kathy, grandma to Audrey, 2 years Please contact mito-owner with any problems or questions.

[Guest guest]

Count on prayers from me also! I hope they find some answers.

Lee

Mom to Red, Ada & Angel Lily

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[Guest guest]

My thoughts and lots of prayers are with all of you as well.

Blessings,

Horsley

Re: Audrey going to hospital

Count on prayers from me also! I hope they find some answers. LeeMom to Red, Ada & Angel Lily________________________________________________________________The best thing to hit the internet in years - Juno SpeedBand!Surf the web up to FIVE TIMES FASTER!Only $14.95/ month - visit www.juno.com to sign up today!Please contact mito-owner with any problems or questions.

[Guest guest]

I had sent this a few days ago but did not see it come across so I have copied and reposted it.

Kathy (Audrey's grandma),

       Have they thought about doing J-tube feedings?  Lucas has both a G-button and J-button.  He does not have a Nissen.  Have they done a gastric emptying scan on her?  Lucas is on two meds.  He is on Bethanachol and Prevacid.  He gets his Prevacid per G-button and the rest of his feeds and meds through his J-button.  We did a trial of an NJ tube prior and that did indeed prove that it would work for him.  Lucas' stomach has severe delayed emptying times.  He did develop a fistula by his J-button about 6 months ago but since he had the site changed he has been healthy.  He is able to tolerate virtually nothing by mouth although he was a compete oral eater until 4 years of age.  A nissen is a very invasive surgery and does not always have a high success rate.  It was not recommended for Lucas especially since his stomach doesn't empty like it should.  Our first GI doc (we saw 4 different ones as an inpatient) pushed us to have a nissen and G-tube feedings.  The doc told us that they wouldn't have time to do a gastric emptying scan because they were short of nuclear medicine techs so he felt we should just go ahead and have the surgery and then they would test.  Thank God we were readmitted and dealt with a GI doc who had taken care of a mito child who had had a fundo that caused more problems having had one.  He recommended a NJ trial and then a J-tube placement.  I do believe that we made the right choice.  Prior to the J-tube Lucas had reflux 10-12 times after every meal.  We are fortunate that he only has reflux problems maybe once every 1-2 months now.  We do have the G-button that we can use to vent him or drain out the stomach when he has these episodes.  Hope this helps Kathy.  Feel free to contact me offline if you have further questions.  Best of luck to Audrey. 

Loriann (mom to 3 boys:  and 11 yr olds with ADHD and Lucas 7 yrs. old with suspected mito, Cortical visual impairment, 100% J-tube fed, hypothyroidism, abnormally slow EEG, and non-talker)

[Guest guest]

Kathy-

Also wanted to let you know Audrey is in my prayers. Hope she'll be

home soon.

Shirley, mom to and jodan

On Wednesday, August 13, 2003, at 12:24 PM, LILQT4U1984@... wrote:

> Kathy,

>  

>     You can definately count on my prayers for Audrey. I hope that her

> stay goes well and they can help get to the bottom of her pain. It

> sounds like they have great arrangements for the family to stay. I know

> that makes hospital visits so much more pleasant. Update us when you

> can.

>  

>                                                            Blessings,

>

>

>

>

> Please contact mito-owner with any problems or

> questions.

>

>

[Guest guest]

Kathy,

I have had my own share of problems lately so have not written in a while. I do want to say HAPPY BIRTHDAY to Audrey and I hope they can find the source of her pain soon. My oldest daughter is 11 1/2 years old and they are still trying to figure out why it hurts her to eat. Long story, we are trying to deal with her issues and Cameron's too. He is OK will be going in for procedures and a surgery when Children's Hosp. can coordinate all the events.

Love and prayers to you , Amie, Doyle and all,

Riley

-----Original Message-----From: Dklboone@... Sent: Wednesday, August 13, 2003 7:15 AMTo: mito ; Adultmito Subject: Audrey going to hospitalHi all, First we would like to thank everyone for all of the wonderful Birthday wishes for Audrey, I have copied them and am going to give them to Amie to put in Audrey's keepsake book. It is so wonderful to know that so many people are thinking of her.Now, on to other important issues. Audrey is being admitted today at 3:00p.m. to St. Louis. Cardinal Children's Hospital for further testing and work-up about her pain and reflux. We are not sure if the Nissen is still a consideration for her or not. She does need her G-tube replaced and we diffenitely need to find out what is causing her so much pain. We are sure it is that the reflux has gotten so much worse and the meds don't seem to be working anymore. The docs have mentioned putting her on morphine but with her irregular breathing pattern, that is a rather scary possibility. Of course, what isn't scary when it comes to Mito?We will be leaving about 12:30 to head up there but I am planning to come back tonight and go back up tomorrow morning. Amie and Doyle of course will be staying with her. The part of the hospital where she will be is all new and they are all what they call family rooms so they will get to stay right with her. I will try to keep you all updated as I find out things. Please, if I may ask, that once again you all say an extra pray for Audrey and all of us. You are all an amazing group of people.Kathy, grandma to Audrey, 2 years Please contact mito-owner with any problems or questions.