A Dream For Baylee

12/10/09 update

Last night I only gave Baylee 1 dose of Ativan. She slept good. This morning Baylee woke up on her own. She has a hard time opening her eyes all the way. It takes too much strength. I got her up, changed her and gave her some formula w/her meds. A little bit later she started whining & crying. I think she is now in pain. :( Ive never heard this type of sound come from her w/the tears. If only she could tell me. I hate not knowing what she is feeling or wanting.

Its 12:00 now. I just gave her 1mg. of Ativan. She was sleepin real good this morning but then she woke up from tremoring, & cryin just a bit. As much as I hate drugs I dont want her 2b hurting either. She's sleeping now. Im feeling like she doesnt want any food anymore. Im not sure tho. She was burping up alot of it after her feeding this morning, which was only 100cc (less than 1/2 cup.) So I will see what the evening brings. We were told back in July when she was first diagnosed with the tumor that she would eventually start sleeping alot. She's now at that point, sleeping most of the day.

12/9/09 update

Last night's sleep was much better. We gave Baylee the Ativan @10pm & she slept all night long. I woke up after 6hrs, checking 2 make sure she was still breathing. It was hard 2 get back 2 sleep.
Mark came 2 visit again this morning. Baylee's bp was extremely high, very unusual 4 her. He said thats usually an indicator of pain or discomfort. So he asked how comfortable I was with giving her morphine. I'd rather give her the Ativan if its working & helping her sleep, keeping her comfortable & her bp down. He said I was doing a good job taking care of her and that most people wouldnt do what Im doing for her. That sent me into tears. We may hav another follow up visit on Friday. Tracy is back next week.
I gave Baylee a bath this afternoon & brushed her teeth. It just wasnt the same. No laughter or smiles while I was singing the coconut song. The entire time I kept thinking this wil probably b the last bath I give her.
Now Im sittin here holding her, shes sleeping & Im doing my best 2 enjoy our time 2gether.

12/8/09 update

updates will probably b mor frequent now. We had another very hard nite w/Baylee. She slept for 2hrs when we first went 2bed but then the tremors started & would not stop. I tried alot of things to help her b still but nothing worked except 2hold her upright against me, with me sitting up. I tried that for about an hr until my back & bum were hurting. I was cryin alot & Duane got up to help me. He took a turn holding her in the recliner. She falls asleep so quickly when we r holding her that way. It doesnt last long tho. They both slept for about 3hrs. I went to sleep on the bed.
Duane took the day off today. He called the Dr. this morning to find out what medication we can give her, if any. He suggested Ativan (which we already have from the medicine kit that was delivered when Baylee was assigned to hospice) but wanted to talk to hospice b4 we gave her any.

It's now 12:00
Hospice sent nurse Mark to see Baylee, check her vitals & get some info from us. Her heartrate was up quite a bit. We gave her 1mg of Ativan just a little bit ago. She fell asleep within 15mins. We're going to see how long the 1mg lasts and go from there.

12/6/09 update

Updating from my phone tonight.....

Baylee doesnt like teeth brushing at all. Swallowing is extremely difficult. Just having toothpaste in her mouth is hard for her. Im trying to rinse out her mouth by just pouring in some water & letting it all drain out on a towel. It's a horrible mess but it works. She also bites the toothbrush because she doesn't want me brushing her teeth or her tongue. I have the water extra warm so she can feel it in her mouth. She's been burping & spitting up alot recently leaving a sour taste & smell in her mouth. I'm trying to keep her mouth as clean as I can.

Sleep is once again a struggle. It started Friday night. Baylee's been tremoring so rapidly all over her body that it keeps her (and me) awake all night. We had 3 hours of solid rest that night and now the nights are hard to get her to be calm. She will fall asleep & 2mins later the tremors wake her up. It's awful! Sleep for her has become a combination of extended cat naps all day long. Ive tried holding her trembling arm & hand and holding her whole body, but nothing I do makes it stop. Its so frustrating for both of us. She's also had a low-grade fever. I remember this happening on the right side of her body after we returned home from the hospital. She tremored for days, neither 1 of us getting any sleep. That was 5 months ago. This tells me that the tumor has spread to the right side of her brain. The only way I can describe the tremors is like constant shivering. And since shivering contracts muscles it uses alot of energy.

I will post another update after nurse Sandra visits during the week.

week 21

12/2/09 update

Nurse Sandra came to visit Baylee today. It was short since she doesn't know us too well. She checked Baylee's vitals and we talked alot. She was interested in getting to know us, when Baylee was disagnosed with the tumor (and Leigh's), how I (& Duane) was coping, what we did during the day, what I could expect (possible seizures) and what to do, things like that. She wanted to make sure I was *somewhat* prepared. She was really upset when I said the Dr. gave Baylee 3 weeks to 3 months. I could see it in her eyes. It's heartbreaking, even for a hospice nurse who typically sees elderly patients. A child hasn't had a chance at life but an 80 or 90 yr. old person has had a long lifetime of experiences & memories. Sandra was real sweet and will see Baylee next week...Tracy is still on vacation.