Saturday, April 30, 2011

The girl and her new shoe collection

Last week, Ada's surgery for her wisdom teeth had been postponed, which is good for us because she had been sleeping and napping all day. Must be tried from all the commotion with the feeding tube. The tube works fine so far.

Today Rachael came over and we took Ada to Trader Joe's. We both fill up the cart with good food. Ada was good but attempt to grab other people cart one time. I found freeze dried strawberry that cost less that what I bought at Georgetown Market. I also bought Light coconut milk for curry. Arthy has been cooking for us and he is very health conscious.

Rachael is changing job so she had been helping her mother-in-law clean out her closet. She got 3 big boxes of shoes and stuffs in her car. Size 7 1/2 and 8? Great, we both wear the same size shoe.

We came home and Rachael took out the boxes. I tried on some shoes. Ada was curious. Rachael gave Ada a shoe and Ada extended her foot out, Rachael put the shoe on, Ada gave her another foot and she looks happy.

I should have tape the event, really. Rachael showed Ada another shoe, she wave her hand, as a "no no". Then Rachael gave her another shoe, she extend her foot out again.

The girl has a new collection of shes now. Amazing how can she picks and chooses and makes decision. The brain must be working hard today.

Tuesday, April 26, 2011

New tube

Today we got up at 6 am and headed to the Interventional Radiology department so Ada can have her feeding tube put back in. The catheter tube worked just fine but it might have irritated Ada's stomach. The nurses in the prep rooms remembered us so there was no need for long introduction. The last time we were there was 3 months ago. Joe, the technicians just shook his head and went back to see if he can find some other alternative tube for Ada.
The feeding tube has a balloon at the end, after you put the tube in the stomach through a small hole over the belly button, you inflated the balloon with salt water. The balloon will keep the tube in. Usually, each tube last 5-6 month but it can be pull out by accident. Joe suggest a shorter tube that the opening is next to the skin. Another tube will be connected for feeding. Well, Ada doesn't like to be touch and fussing with her stomach area all day won't work. The next one is the same feeding tube with the end cap that look like a small mushroom. It can stretch so thin in order to put it through the hole , and once it get in, the small rubber disc will make hard to pull the tube out.
Joe did mention it last time and tell me to call Ada's GI doctor, which I did but he didn't tell me anything new. How far and wide do I have to search in order to make our lives a bit easier, you know, not having to spend 5 hours in the ER every 4-5 months? I am sure the mushroom kind had existed a while ago, and no one thought, ha, that's would be better for Ada. Same as the earlier time when Ada used to have a G-J tube. It works because it prevent aspiration, but it clogs easily and the food goes down very slow. It was my executive decision to change from G-J tube to G-tube and it went well.
Joe said this tube should last at lease a year to 5 years, so we won't see each other often unless I just want to talk to him. Thank you, Joe, you will be missed.

P.S. I am happy with Congresswoman Gifford's progress. But just to remind you that in reality, if you, an ordinary people had a severe brain injury, don't expect to be flown in to the hospital by the private jet, then helicopter. Don't expect that they will let you stay in the hospital for 3 months with private nurse and everyday therapy. Don't expect the Musical therapy either, unless you have the same kind of insurance that the Congresswoman has. I thought Ada has the best, Medicare won't pay for her Musical therapy. Don't get me wrong, I am forever grateful for what we had received. Salute for this great country.

Saturday, April 23, 2011

Feeding tube

Yesterday we went to the pre-op for Ada at Indiana University Hospital where they prepared the paperwork for Ada's surgery next Wednesday. Ada had been patiently waiting and sitting in her chair while I talked to the nurse and doctor. After two hours, we went home only to turn back to Methodist hospital because her feeding tube came off. And it is Friday afternoon which means it was busy and the Intervention Radiology Department will be closed till Monday morning. Then I have to call them at 7 am Monday morning and beg them to schedule Ada ASAP.
While 2 doctors were working in putting the feeding tube back in her stomach, me and 2 nurses were trying very hard to hod Ada's down. She was mad, scare, and hurt at the same time. I think she almost, almost cry. Unsuccessfully, the doctor had to put the catheter tube in which mean it needs to be replaced later. Exhausting and angry, Ada let me know that she wanted to get out of bed and sit on her chair. She calmly pointed to her shirt and pants at the end of the bed. I put her clothes back on, then she pointed to her shoes and lifted up her feet for me. Then she pointed to the door but we can't go home yet because they wanted her to get and X-ray. The technician was very kind, I think she remembered Ada. The nurses came back and laid on top of Ada. Another round of wrestling with her. I was in tear, no, I really cried.
Keep in mind that by the time we walked into the ER till after X-ray, it had been 5 hours. What did we do in between? Well, we played games on iPad, I blew up the latex glove and let Ada talked with the hand, I folded the papers into airplane, I pushed her back and forth in the hallway in her chair and constantly asking the nurse to get things moving at the same time because last time Ada had water was at 9 am and it was now 6 pm. We both very, very tried.
Finally, I saw Ann Huber, the ER Angle, she came to the rescue. She got us out of there in 15 min. I talked briefly with Ann about why can't they sedated Ada down here in ER and they can't because it is a simple procedure, well, for others not for the fighty, mighty Ada.
The question is Ada will have surgery on Wed and I wonder if she can be sedated on Monday then again on Wednesday.

Thursday, April 21, 2011

Uh and Ah

Only if you could be in bed with me and Ada at night, you would be able to hear the sound Uh and Ah in the dark. It is my little girl, who just turn to me, pads me on the shoulder and let me know that she is awake. Then she giggles happily, just little girl who discovers something cool she can do. So I just Uh and Ah along with her till she goes back to sleep.
She is also be able to tell us more that she needs to go to the girl's room or need to be changed. She is able to open her left hand more and more to give us Hi-5. She gives us a kiss when asked. Is that counted as"Following command"?
I also found healthy soup in a box that I've been given to her in the evening. The same soup that cost $5 at Meijer, only cost $2.50 at Trader Joe. I could have cooked for her but I think the soup is good enough. She also eats some Freeze dried Strawberry that I added to the Cheerios. Only it cost $5.89 per bag at the health Food Store, so she can eat the whole bag in one day.
Ada will have her surgery on her teeth next Wednesday. I am quite nervous, since I don't have any idea of how to take care of her after surgery. They can keep her 23 hours at the hospital as outpatient.
The weather has not been nice, rain and cold kept us inside. Lately, Ada likes to take a long nap. Sometime she naps for 2-3 hours. Good for her, but not good for me. because I have to lay down next to her and she will put her legs on my legs. All I have to say is, it is like having baby Ada all over again. And I love it.

Monday, April 11, 2011

Update on Ada

I have not written for a while, please accept my apology. Ada is fine and she is as happy as she could be. There are a few changes such as Ada has a new nurse which means it will take time for them to adjust and understand each other. So far so good. We go out as much as weather permitted. She likes to be outside and will point out that we should go outside on sunny day only we can't because sometime it is so cold. She is able to let us know more of what she want. Ada will have surgery at the end of the month for her wisdom teeth. they will take out all 4 at the same time. I don't want to think about it, not sure how she will react after surgery. We go to see Speech Pathologist twice a month now. We play games and teach her how to follow direction. She is still making progress and that's more important than anything. Since I sleep with Ada, on the night that I can't sleep, I snugged in the iPad and played games under the blanket. This doesn't go well now when it is warmer and I can't stay under the blanket. So I let her watch me play "Angry birds". Ada will laugh and laugh at everything till she took the iPad away from me, which is the indication that she wants to sleep now. And she wakes up smiling every morning. Last week I had to pick up my friend from Thai temple in Huber Height, Ohio. I decided to take Ada with me. She sat quietly in the car eating her Cheerios for an hour then started to pad her hand at the door. She hasn't been in the car that long. We went inside the temple and talked to the monk who blessed her. She was laughing and happy. I think, some how she likes it when when someone speak Thai to her. Ada is napping now and she will let me know as soon as she wakes up. We are dealing with "separation anxiety" because someone is always in the room with her, so she doen't like it when I step out. Sound like a 3 years old, isn't it? After all, she is my baby and she is growing up.