Guest guest Posted December 11, 2002 Report Share Posted December 11, 2002 Hi all once agin!!!!!!!!1 And the saga continues. Yesterday Amie called me before I left to go up to St.Louis to see Audrey to tell me she and her husband were think with what they thought might me foo poisoning. It seems they had eaten some sort of egg and sausage casserole on Sunday at the RMH and started getting sick Sunday night. They also found out that one other person that had eaten the dish had also gotten sick about the same time as they had. Once I got up there Amie was so sick she could barely stand so we took her to the ER where the doctor agreed with the food poisoning theory, they gave her 2 1/2 liters of IV fluids, some phenergan, pepcid and toradol. Her husband wasn't feeling great but he said he didn't need to see the doctor, he was at least keeping some fluids down. Theylet us take her back the RMH with the understanding we were to bring her back if she wasn't better in 24 hours. This morning she was somewhat better and able to keep some jello and other clear liquids down. Her husband had decided last night he was hungry so he went to Mc's for a burger and this morning he wasn't feeling very well. This they did not need on top of the other stress. Audrey had another EEG yesterday and it should seizure activity from the top of her brain radiating down with almost constant activity. They did a MRI today to rule out a tumor( like we need a MRI to rule that out), and also they were looking for any changes since the one done last spring. They were specifically looking for white lesions on the brain. They will get the results of that in the morning. The neuro also requested the genetics spec do a skin biopsy before Audrey is discharged. Also, Audrey was started on Tegretol in addition to the Lamictal. I will let you know as I have more news. God Bless everyone and Thanks for all the prayers, Kathy, grandma to Audrey, 16mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 11, 2002 Report Share Posted December 11, 2002 ne Don't fault your mom if she couldn't be there for you in the early days of Gaby's illness. For some the only way they can cope is to pretend the situation doesn't exist. Unfortunetly, we do have to face the situation one day and for some that comes sooner tham later. I hope she is there for you know. My own mother is still living and she is the kind that just keeps saying everything will be okay, however, she and my dad have finally come to the realization with Audrey that their ok isn't the way they had meant. They are good people, they just tend to hide their heads in the sand at times. Yes, Gaby and Audrey do sound like they have a lot in common. I hope one of these days Amie will have the time to email you and many others in this group. You all have so much to share with one another. God Bless Kathy, grandma to Audrey, 16 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2002 Report Share Posted December 22, 2002 , I hope Leah is home by know. It is so hard when our little ones are in the hospital. Audrey is going to come home tomorrow if all goes well tonight. However, her ped is calling up to St. Louis tomorrow to see if she can be seen right after Christmas for G tube placement. She keeps aspirating and he is afraid it is causing her to get so much weaker. We have really noticed a difference since she was in the hospital for seizures a few weeks ago. Amie is ok with the G tube as we are hoping it will help to keep Audrey out of the hospital and also help her to gain a little strength. Again, I hope and pray Leah is home and doing better and that you have a wonderful Holiday. Best Wishes Kathy, grandma to Adurey,16mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2002 Report Share Posted December 22, 2002 , Yes it looks like Audrey is going to go the G tube route asap after Christmas. Her ped is calling St. Louis tomorrow to make the arrangements. We are hoping this will help keep Audrey out of the hospital. They think she is aspirating almost everything. We have known she had reflux and silent aspiration for a while now but it has not been this bad of a problem until she started having more seizure activity. She went in the hospital with vomiting and dehydration and ended up with aspiration pneumonia again. She is even having trouble with her meds. Hopefully the G tube will help her as much as it has helped Cameron. It is a shame for you that you have no close family near you. Where do you live? We always lived far from our family when Amie and her brother were small and I always told my husband that I would always try to stay close to our children and grandchildren. I hope you have a wonderful Holiday season and everyone stays healthy. Best Wishes, Kathy, grandma to Audrey,16mos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2002 Report Share Posted December 22, 2002 Hi Kathy: Leah came home on Friday early evening. and I wanted to wait and make sure she was taking liquids via a cup or her bottle. One time she was sent home a day early and we ended back up the hospital. She is getting back on track with eating again. Today must be her eating day as she had a sandwich, and then two apples later for lunch. And now she is having a hot dog and some baby food. Got that in case she didn't want to bother with chewing, at least she would be getting pureed food in her. I'm glad Amie is accepting the tube. How about her husband? I hope all is well and you all have a wonderful and blessed Christmas. I am in the Christmas play sermon this year. And I got a kick out of one of my lines is that I play Miriam and I am questioning why God is sending me to the stable to see a loving husband and a healthy baby because one line is (and I get on my knees and try to cry as I say this) why is my baby sick all the time? I hope people don't take that in the wrong way for me because I don't ask that question anymore. So it should be an interesting sermon on Christmas Eve. Enjoy your Christmas and spoiling Audrey and everyone else involved in your wonderful family. Glad to hear you have such a supportive system for you all; even in the hospital. Nerenhausen mom to Leah klboone@... wrote: > , > I hope Leah is home by know. It is so hard when our little ones are in > the hospital. Audrey is going to come home tomorrow if all goes well > tonight. However, her ped is calling up to St. Louis tomorrow to see if > she can be seen right after Christmas for G tube placement. She keeps > aspirating and he is afraid it is causing her to get so much weaker. We > have really noticed a difference since she was in the hospital for > seizures a few weeks ago. Amie is ok with the G tube as we are hoping > it will help to keep Audrey out of the hospital and also help her to > gain a little strength. > > Again, I hope and pray Leah is home and doing better and that you have a > wonderful Holiday. > > Best Wishes > Kathy, grandma to Adurey,16mos > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2002 Report Share Posted December 23, 2002 and still the prayers keep coming . . . Audrey > Hi all once again > > Audrey is still in th hospital. Besides the vomiting and dehydration > she also has aspiration pneumonia once again. Yesterday when the ped > came in he told Amie that it is time for Audrey to be referred to a > gastro doc for probable G tube placement. So, right after Christmas > they are hoping to see about that. Amie is ok with it as she has had > known for awhile that it was coming. Hopefully Audrey will have more > energy and less hospitalizations after this is done. Her temp has been > down since about 11:00 Friday night so maybe she will get to come home > later today. Also no more vomiting either. It is so nice to have her > at our local hospital, also where I happen to wor. It is a small > hospital, under 35 beds, but it is like family. So many of the folks I > work with have seen Amie grow up and now they are so attached to Audrey > as well. We are so fortunate in so many ways. > > I want to thank everyone for all the prayers, I know they are helping us > all cope with this situation. I pray everyday for all on the mito list > and their families. > > Merry Christmas to all, > Kathy, grandma to Audrey, 16 mos. > > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2002 Report Share Posted December 23, 2002 Hi Kathy, Hope the g tube helps Audrey. It's so wonderful she can be at your community hospital, and that the care is so good there. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2002 Report Share Posted December 23, 2002 Kathy, We live in Washington, one hour North of Seattle. I have been thinking a lot about Audrey since yesterday. I was wondering if you could coordinate her g-tube placement with a fresh muscle biopsy. I am pretty sure you have an upcoming mito specialist visit. She would only have to go under anesthesia once that way. They could place an NG tube (no fun, we had one for several months) temporarily while you wait for the surgery. Just a thought. If Cameron has to have surgery again we would try and get the biopsy done at the same time as suggested by our specialist at UW.Just a thought. -----Original Message-----From: klboone@... Sent: Sunday, December 22, 2002 2:59 PMTo: Mito Subject: RE: Audrey,Yes it looks like Audrey is going to go the G tube route asap afterChristmas. Her ped is calling St. Louis tomorrow to make thearrangements. We are hoping this will help keep Audrey out of thehospital. They think she is aspirating almost everything. We haveknown she had reflux and silent aspiration for a while now but it hasnot been this bad of a problem until she started having more seizureactivity. She went in the hospital with vomiting and dehydration andended up with aspiration pneumonia again. She is even having troublewith her meds. Hopefully the G tube will help her as much as it hashelped Cameron.It is a shame for you that you have no close family near you. Where doyou live? We always lived far from our family when Amie and her brotherwere small and I always told my husband that I would always try to stayclose to our children and grandchildren.I hope you have a wonderful Holiday season and everyone stays healthy.Best Wishes,Kathy, grandma to Audrey,16mos.Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2002 Report Share Posted December 23, 2002 WOW, ! You're ALMOST a Canuck! Can you say "EH?", EH? your Canuck neighbour, especially if you live on the Olympic peninsula R wrote: Kathy,We live in Washington, one hour North of Seattle. I have been thinking a lot about Audrey since yesterday. I was wondering if you could coordinate her g-tube placement with a fresh muscle biopsy. I am pretty sure you have an upcoming mito specialist visit. She would only have to go under anesthesia once that way. They could place an NG tube (no fun, we had one for several months) temporarily while you wait for the surgery. Just a thought. If Cameron has to have surgery again we would try and get the biopsy done at the same time as suggested by our specialist at UW.Just a thought. -----Original Message----- From: klboone@... Sent: Sunday, December 22, 2002 2:59 PM To: Mito Subject: RE: Audrey , Yes it looks like Audrey is going to go the G tube route asap after Christmas. Her ped is calling St. Louis tomorrow to make the arrangements. We are hoping this will help keep Audrey out of the hospital. They think she is aspirating almost everything. We have known she had reflux and silent aspiration for a while now but it has not been this bad of a problem until she started having more seizure activity. She went in the hospital with vomiting and dehydration and ended up with aspiration pneumonia again. She is even having trouble with her meds. Hopefully the G tube will help her as much as it has helped Cameron. It is a shame for you that you have no close family near you. Where do you live? We always lived far from our family when Amie and her brother were small and I always told my husband that I would always try to stay close to our children and grandchildren. I hope you have a wonderful Holiday season and everyone stays healthy. Best Wishes, Kathy, grandma to Audrey,16mos. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2002 Report Share Posted December 23, 2002 Kathy, This combined g-tube/muscle biopsy was how had his done. We hadn't seen the metobolic folks yet but they agreed this was a perfect time based on his lab results. was on the nasal g-tube for over a year before we agreed that the g-tube placement was the best thing. I got pretty good at putting it back in when he coughed it out.They said the n-g tube could raise the rate of nasal infections but that was not so in 's case. he didn't have reflux at the time or aspiration and I don't know if the n-g tube would make those worse. Twana > Kathy, > We live in Washington, one hour North of Seattle. > I have been thinking a lot about Audrey since yesterday. I was > wondering if you could coordinate her g-tube placement with a fresh > muscle biopsy. I am pretty sure you have an upcoming mito specialist > visit. She would only have to go under anesthesia once that way. They > could place an NG tube (no fun, we had one for several months) > temporarily while you wait for the surgery. Just a thought. If Cameron > has to have surgery again we would try and get the biopsy done at the > same time as suggested by our specialist at UW.Just a thought. > > > RE: Audrey > > > , > Yes it looks like Audrey is going to go the G tube route asap after > Christmas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 24, 2002 Report Share Posted December 24, 2002 ne, Could you possibly email me with some more specifics on Gaby's health issues. For example, how old was she when she first started having pfoblems, is she walking, talking, etc? At 16 mos Audrey is still unable to do any of those things. When was she diagnoised? Audrey is going to see Dr. Cohen January 20, so hopefully we will get more answers. I am glad to hear that the FT helped Gaby and I pray Audrey does as well. Have a very happy Holiday Season. Kathy, grandma to Audrey, 16 mos Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2003 Report Share Posted January 10, 2003 Hi Kathy, I have just returned from a break away and read that Audrey has her G Tube! Hope all is going OK. Is it a Bard button? Gaby also has a Bard. She has tried a few other kinds, but we always come back to the bard for many reasons that suit Gaby. ne mum to Gaby PDH in Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2003 Report Share Posted January 26, 2003 Hi all, I just want to say thanks to all of you who responded recently to our posts regarding Audrey and her recent appointment to see Dr. Cohen. Things are going ok. We are taking it a day at a time. Yesterday, in fact, was girls day out. Amie, Audrey, Melinda (Amie's 6 yr.old), and I went shopping. The stores were having some wonderful sales so I went a little crazy,but it felt good for the " girls " to be out together once again. Amie and Doyle now have a nurse that comes in at least three times a week. I will be honest, when they first told me that I felt a little hurt as I had been the one taking care of Audrey through the week when Amie was at work, but now I can be Grandma instead of nurse. Besides, I can still go to their house and see her, plus if the regular nurse is ill I can be the sub. Audrey is doing well with her feeding tube. They still can give her some of her favorites by mouth as a treat, but she seems to have more energy now. I don't think any one realizes how much energy it takes for these children to eat. The other kids are doing prett good with their baby sister. Their 5 year old Alec doesn't like to eat very well so the other day Amie told him if he didn't start to eat better he might have to have a tube like Audrey. He thought hat would be great. He said, " Good, then I wouldn't have to sit down to eat! " Five year olds have an answer for everything!!!!!!!!!! Anyways, again I just wanted to thank everyone for their support, I don't know what we would do without each other. You are all terrific!!!!!!! Love ya all, Kathy, grandma to Audrey, 17mos Quote Link to comment Share on other sites More sharing options...
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