Feeding tube - Part 2&3

Monday morning at 7:30 am, I called to make an appointment for Ada but they said they were packed and asked if we can take her Tuesday. We had done this before so I wasn't worried. By 10:00pm, her temporary tube was pushing in ward. I called ER and they advised me to take her back. The doctor did not think it is harmful but might caused some pain and I know Ada was not happy about it. He decided the best way to help her is to deflate the bubble, pull the tube out, inflate and tape the tube to her stomach. About 3 hours later, he came back and took 2 minutes to do that. It was about 1:30 am and Ada cannot have anything to drink or eat. (I informed the nurse & doctor about this, trust me, I was about to get her up and walk out of there before I start yelling at somebody). I did not give her pain medicine and we both did not have much sleep at all. She curled up putting her knees to her chest. I climbed in bed with her, hopelessly.
Tuesday is much better day. All the nurses in the prep room knew Ada from before, so we received a special treat. I asked the technician whether I can get her in every 6 months for tube replacement. She said they have a preventive plan, like a maintenance plan so she make a 6 month schedule for Ada. Duh.... Why can't they just tell me this last year? Do they really expect me to know about this thing?
By the way, Ada has G-J Tube that's why we have to get it done in Radiology Department and she needs to be sedated and restrained. Otherwise, 4-5 people have to hold her down. The girl is so strong and she kicks.
We both took a long nap after we came home. Hope she feel like herself again soon so we can move on with the communication board and device. I need a vacation.

Feeding tube

We had to take Ada to Er last night. Nothing serious, just that her feeding tube came off. She needs a new feeding tube every 6 month, but going to ER on Sunday night, she won't get a new tube right away. The doctor only put a temporary tube in there so we have to go back tomorrow.
We met our old friend, nurse Ann Huber. Ann had saved Ada's live last year when we took her to ER with 104 degree temp. and the intern doc who didn't know what to do. The Neuro doctors did not want anything to do with her either. Ann said she can feel the heat from Ada's body without touching her. Ann managed to round up Dr. Biggerstaff to come see Ada. Ardis, Ada and I waited in ER for 16 hours before Ada went up to her room. Another time Ada was waiting for her room, Ann stopped by and transferred Ada up stair by herself. We haven't seen her for more than a year, Ann was delighted to see Ada and I was happy not to have to explain over and over why Ada cannot talk or why she doesn't like to be touch.
As we became a familiar faces at Methodist ER, I am still fascinated with how long it takes, sometime, for a doctor to stop by, before we can get the x-ray, to have blood drawn, to get results, to get Medicine. We spend from 2-16 hours in there, waiting, even though it does not seem busy in there. It takes forever to wait to get transfer to a room after admitting because it takes forever to discharge a patient. One time we waited for 6 hours for the ambulance to come and transfer Ada to RHI, which means someone in the ER had to wait 6 to 7 hours for the room to be ready. last time the doctor order a gallon of "Go Litely" for Ada. It took 4 hours. Trun out that the pharmacy cannot put the gallon jug through the running tube and forgot to inform the nurse that she needs to go down stair to get it. Most nurses and doctors are very kind and very helpful. We do have our favorite. I guess I can write a book about it.
She is not happy right now, it must be sore around the tube area. Hope she feel better tomorrow with the new tube.

V8

Dr. Chuck came by to evaluate Ada last week. This is the first time we talk to a doctor who understands Ada's condition. He was able to answer my questions and explained everything in plain English. He explained why she cannot communicate or talk. I asked him about her feeding tube. He said we can feed some fruit juice through her tube. Ah-ha! How about some V8 so she can get a full day supply of fruit and vegetable.? So we try. Not only she can tolerate it well, it also solve the constipation problem.
Ada's arm healed up real well. She starts moving it again. We can start exercises her arm but she still keep it tight. We have to try to get her up and walk again. She had been sitting all day for a while. But she is happy and laughing. We also working with the picture board. We put a picture of cheerio and other things on there. She has to pick up the picture of Cheerio and put it in our hand, we then can give her Cheerio. It sound like an easy task, but not for Ada. She is working on it though, and we have hard time not giving her the Cheerio. Again, we just learn that Crossroad also provide PT, OT and Speech. We wasted our time at RHI. That's place is not for Ada.
The Ebay auction is going well. We will continue to do so for a while since we have more than 80 items.
Ada has a big gift from Santa, but it did not come from the North Pole. It was from her dear friend, Grant Brown, who stations at Afghanistan. I wish for him to come home safe.
We are planning Ada's Birthday party on Saturday January 16, 2010. She will be 25. Turning 25 is quite a big deal for Thai people. It is the age when you are entering an adulthood; finishing school, getting a job, and settle down. It will be an opportunity for her friends and my friends to come visit us. I know it is hard to see her like this, but a friend is always a friend, right? Or is it just me?

Benefit Ada

Ebay auction - benefit Ada starts today. We received more than 80 items donated from Polymer clay artists around the world. Kathy Stuart had finally put some of them on Ebay today. Thanks Kathy. There will be more to come but check out www.ebay.com and put "benefit Ada" in a find box.

Disco Ball, Michael Jackson and Prince

It is the right combination that we've been looking for. Ada always listen to music. When she was a little girl, we listened to Classical music. At school age, we were in the car a lot for Gymnastic meets, so we put on Oldie music so I can sing along while driving. By the time she gets to High School, she had her preference. Ada had music on all the time. In her room, in her car, on computer.
Every time we saw therapist, they always ask me what kind of music did she like. I can't tell them because nothing seems to get her attention. What color that she like? What can we use to lure her to do things we ask her to do? I was pretty hopeless until we went to Crossroad.
They have a device that hook up to the disco ball. We set the timer and when it stop, Ada has to push the button to make it starts again. She was laughing at the disco ball. The speech therapist also let us use "Cheerio" as bait.
We got the device and we hook up the disco ball along with CD player that happened to have "Prince" CD in it. She gave us a million dollar smiles. We also alternate "Prince" with "MJ" and she responses to that very well. She also sat quietly watching "Mama Mia" and "Purple Rain" the other day.
We used to play "MJ" music a lot when my kids were young. Arthy wanted to dance with "MJ" when he grew up. Probably the beats and loud music that caught her attention, but I think there are a lot of Ada in there waiting to come out.
She also making "AHH" sound in her throat all day, I can hear it from my table which is in front of her room.
We will continue to work (and play) with her every chance we get.
Hopefully more good news to come.