Gaby's Story
July 17 – 23, 2006

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Monday July 17, 2006

Blood counts continued to drop overnight, still in isolation. She's feeling a little weaker this morning and slept until just before 10:00 am. We talked to Oncology about using injections to raise her counts but were told they need to make sure they can recover on their own before the next chemo treatment. We'll wait and see what tomorrow brings.
As we expected, Gaby needed the potassium supplement and didn't like it very much. She managed to eat a whole banana today though.
Her blood pressure is up today and they are asking her to drink more water. This is proving to be a challenge.
She is breathing with her trach capped for several hours throughout the day now and the doctors would like to try capping her trach overnight to see if she can breathe as well when sleeping. She's very excited to have Dad staying on a sleep over in her room.


Tuesday July 18, 2006

Gaby tolerated the trach capping well overnight. She's still not able to breathe through her nose well while sleeping so is getting most of her air through her mouth. We're just happy she can breathe again.
They are going to do the capping again tonight. If she can get through another night without incident, they will look at removing it tomorrow. Yeah!
The day was pretty uneventful, she is getting better at changing the trach ties and is eating a lot. Her blood pressure is still a little high so she has been asked to try to drink more water. We got her some flavoured water to help her with this.
Her blood counts are on the way up so we don't have to wear the gowns and masks anymore while staying with her.
She had lots of visitors today and was particularly happy to see Brianna F. Some child life people came by again today to play and paint with Gaby. She loves their visits.
They weren't able to change the gauze on her trach until after 10:00 pm today. She was very tired and put up quite a fight getting it done (45 minutes for a 5 minute procedure). From now on, they are going to try and get it done before she gets so tired.


Wednesday July 19, 2006

Gaby woke up in a great mood today. She went through her morning trach tie change without any fuss at all. Hope that keeps up.
A rash that started developing yesterday on her chest and side is getting quite itchy. They feel she is probably sensitive to the solution used to disinfect the area around her CVC (center line, for getting meds…) and gave her some anti histamine to try and control it. Didn't have much effect, so they going to get her a cream to try later.
Her blood counts are almost high enough for her to be out of isolation. So tomorrow we are hoping she can get out of her room to play for a bit.
We had a meeting today with the ENT doctor that performed her tracheostomy. He said there is still some concern about her breathing at night and doesn't want to remove the trach until next week. Too bad, we were hoping she might be able to come home by the weekend…for a few days at least.
She's had a good appetite and is drinking a lot more water now so her blood pressure hasn't been high all day. Gaby's friend Simrit came to visit today, she's been very happy to start seeing some of her friends again.


Thursday July 20, 2006

Gaby's breathing last night was still good, only struggled a couple times to get air in. They are still concerned and will continue to monitor her throughout the nights.
Her blood counts are in normal range today so she was able to play outside her room. They also brought down a kids stationary bike from the oncology ward for her to ride. Hopefully, she can burn off some of that excess energy.
She also got a visit from the music therapist, always a hit. Dad discovered a live network connection in her room, can't send and receive email but Gaby is able to get to all her favourite girly girl sites.
They removed the stitches from her CVC line today. It was way overdue and could not be put off any longer. Gaby was not impressed and put up quite a fight. Glad we don't have to do that again.
Mom came home to some sad news last night, our cat was hit by a car and didn't survive. Gaby took the news rather hard as they were very close. Later in the day she said she would like another cat and we told her she could pick out a new kitten once she is feeling better.


Friday July 21, 2006

Woke early today, had big breakfast and was in a great mood. She overheard that her blood counts are normal so she knew she would be allowed to go outside at some point.
She is attached to an IV hanger (getting fluids in preparation for her chemo coming later) so she won't be able to get to the park but is happy just to be getting out.
Her chemo treatment came in the early afternoon and we met Mom and the boys outside for a little walk when it was finished. She got tired pretty quickly so we came back into the ward and Gaby and the boys played cards and rode her bike.
By 6:00 pm she started feeling really sick and wasn't much in the mood for any more fun. She had to be coerced into taking her evening meds and by 9:30 was even too tired to put up a fight getting her trach gauze changed. She really wanted to go to bed tonight and is hoping she won't still have the 'flu' in the morning.


Saturday July 22, 2006

Gaby had a tough night. She was awakened every 2 hours to get checked out and go to the bathroom.
She's feeling very sick and doesn't want anything to do with food just wants to sleep all day. Can't blame her.
The fluids she was getting for the chemo were supposed to be stopped at 1:00 pm today but will have to be continued until she can keep some food down.
Gaby also got the needle in her leg back again so they can start giving her the meds for bringing up her blood counts.
Her temp has come up a bit today so they are keeping a close eye on her and Mom is spending the night. Gaby's thrilled to have her on a sleep over.


Sunday July 23, 2006

Gaby slept well overnight and woke up around 8:30 am. It was pretty quiet in the ICU/TCU ward.
She's still not feeling great and was sick to her stomach after breakfast and lunch. By dinner she wasn't feeling as bad and managed to keep down a few bites of cheese pizza and some raw veggies. She's still on the IV fluids as she's not drinking much water, the hope is to remove it tomorrow.
Getting her trach ties changed was no problem at all. Looks like she's going to get used to all this trach care just in time to have the trach removed. Hopefully that will happen tomorrow.
The plan is to put her to sleep in the operating room for evaluation and a look down her throat to make sure there are no problems and if all goes well they will take it out.
Gaby weighed in today at 46lbs, still down a couple pounds from her weight when she arrived at the hospital and about 10 from when this whole thing began.
We all got outside for a walk around the grounds this afternoon, she likes her outside time even with the IV pole accompaniment and we spent the evening painting and watching a movie.

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