Gaby's Story
July 10 – 16, 2006

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Monday July 10, 2006

Gaby in a very good mood today. She was happy to see the 'child life' staff and was able to make some crafts and play music with the music therapist. She's talking a lot more now that she able to get air around her tracheostomy.
Still doesn't want to eat, scared she is going to throw up if she eats.
Very traumatic time taking out the sutures from her tracheostomy, cleaning the area and adding gauze… Not sure who the experience was worse on Gaby, Dad or Zack (who got the phone call after the procedure was finished.)
They didn't want to sedate her for the procedure as the trach ties are something that are going to have to be changed daily now and they won't be able to sedate her that much. Ate a little bit of soup and crackers today.
Were told we would probably be here for at least another 5 weeks. Talked to the social worker about getting all care givers together to give us a plan for getting Gaby home as we have been told several different plans at this point and just want to have everyone on the same page.

   
 

Tuesday July 11, 2006

Gaby can breathe through her left nostril for the first time in 4 months. She is very excited to be able to smell things again.
Trach ties and gauze replaced, she still fights when they do this so the 'child life' therapist came in with a doll to show her how the procedure works so she won't be as scared about the whole thing.
There is some blood coming from her tracheostomy site today. The doctor said it was nothing to be worried about and will heal in the next couple of days. Hmmm…when have we heard that before?
She is very energetic today so they let told her she could go on a road trip to the third floor playroom for an hour. She made it 40 minutes before getting too tired to stay and we went back to her room for the rest of the day.
Ate a bit of kraft dinner tonight and started asking for other things to eat.

   
 

Wednesday July 12, 2006

Gaby didn't want to get up this morning. She's very grumpy today, keeps telling everybody 'bye bye'.
Coughing up a lot of stuff today, still blood coming from her trach, still being told it's nothing to be worried about.
Was told today that she won't be going home with her tracheostomy as they feel the tumour is shrinking fast enough that she will be able to breathe on her own within 5 weeks.
We went to a 'Beach Party' in the oncology playroom today and Gaby won a few prizes.
The outpatient nurse came by to review some of the things we will need to know about taking care of Gaby at home.
Today is the best she's eaten since being in the hospital.

   
 

Thursday July 13, 2006

Had her first real bath/shower since getting here. She was a little scared and didn't much care for having to tape a covering over her CVC lines.
Gaby removed her temporary subcutaneous injection needle (used to give her daily injections) from her right leg today. She won't be needing it for a week or so because her blood counts are looking good.
Started losing her hair today, she seems to be ok with it. Nana brought in some hats for her to try out and she said she would like to find a wig as well.
She has been eating well enough for them to remove the feeding tube. She is happy to get the tape off her face.
Went to a science show in the Canuck playroom with Mom & Dad.
Mom & Dad met with the ICU and Oncology doctors today about the plan for getting her home. We were told by Oncology that there is no reason for them to have her in the hospital when she is only getting the single chemo drug and ICU told us that they would like to start down sizing her trach over the next little while and if all goes well she will be able to go home by the end of the month. The doctor who performed her tracheostomy is away until tomorrow and they will confirm their plans when he returns.

   
 

Friday July 14, 2006

Gaby was up at 8:00 am today, quite early for her. She's sounding very growly this morning, good thing they are planning on changing her trach today.
Changed her trach in the afternoon, which seems to have cured the growlies she was having this morning. They put her out for the procedure as she was very nervous about the change.
She's got a lot of energy today and is tired of being shut in watching movies, colouring and playing video games. Asked again if she could go outside for some air and they let us go.
I've never seen anyone so excited to be going outside on such a miserable day. We spent about 15 minutes on the grass before she tried to run across the lawn and got cramps in her legs and feet and had to be carried back to her room. Changed rooms in the afternoon. She is now in the TCU part of the ward.
She got her third treatment of chemo today and thankfully wasn't feeling sick by the evening. Her hair is coming out in clumps now, Mom and Gaby decided to cut it shorter so it wouldn't be so messy.

   
 

Saturday July 15, 2006

Gaby slept late today, we think the chemo has got her feeling a little run down.
She lost a lot more hair overnight, by the end of the day we were starting to see several bald spots. She seems ok with it though and has put some of the hair her and Mom cut off the other day away as a keepsake.
It was quite a fight to get her trach ties changed today. The ties usually get changed in the morning but weren't done until the afternoon today. I think the schedule change and the new people performing the procedure put Gaby off today.
We got a chance to take her outside again today. The respiratory therapist (who has to accompany us) told us of a park a few blocks away and said it would be ok to take her. It was nice to see her smiling and playing with the boys in the park. I think we all needed that.
The dressing around her center line (access point going into her chest for giving her medication...) had to be changed today. She doesn't respond well to the nurse we have today and it took over an hour to get through a 15 minute procedure. We'll be asking for a change in nurses tonight.

   
 

Sunday July 16, 2006

Gaby woke up at 9:00 am today in a pretty good mood and ate almost all her breakfast.
Her white cell counts are down today so she's been put into isolation. She's not very happy about this and can't understand why yesterday she was allowed to go to the park then today she isn't allowed to leave her room.
She's getting a terrible tasting potassium supplement now. We told her, if she can eat two bananas a day she can stop taking it.
Gaby ate a lot today, she's really got her appetite back (even asked for and ate a bowl of oatmeal before bed). She ate everything but the bananas. Oh well…more potassium tomorrow. She'll figure it out soon enough.
Her trach tie change went ok, she didn't complained too much and could be held down by only two people.
After the evening gauze change on her trach she said, "I don't want to be a nurse when I grow up, they have to stay up all night and have to hurt kids." Told her the things they are doing have to be done to help her. She wasn't buying it.

   
 
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