Bea Is Home

Bea came home late Tuesday for hospice care. It is much nicer than the hospital. Less dark and more colorful. She seems quite happy to be home but I imagine she may be a little confused. Hospice care means that the hospital came home with her, at least a little bit.

She is in a hospital bed. She still has a feeding tube in her nose. She is still not allowed to eat. She still can't sit up on her own. Whenever she has returned home in the past she was always significantly better. This is not the case this time but even if she's confused it's better than being unhappy in the hospital.

The hospice are is being taken care of by Harbor Grace and has been pretty smooth so far. We met her regular nurse yesterday and she's very well informed and sweet. So, so far, so good. Chris and I are taking turns staying with her, which means a split night shift. Chris is a night owl and I'm a morning bird so it works out OK for us. And, my in-laws are here so that gives us some respite during the day.

I expect that many of you, especially if you are local, would like to visit. We are requesting that visits come by invitation or request. We also need the visits to be scheduled. So, no drop-ins, please. It's not that we don't appreciate everyone's love for Bea. Bea is just sooooooo lovable. And Bea likes visits but we want to protect her from infection and fatigue. And, we have a deep need for private time with her now, too. I am sure you all understand.

Still Amazing

11 days ago we were told that Bea had a few days or maybe at best a week left. She is still very much here and showing modest improvement every day. She is awake and aware all day. This has been the case for a week. She started smiling on Thanksgiving. Today I held her hand up to her Kindle and she moved enough and pointed her finger to choose her own cartoon to watch. She is trying so very hard to talk. She can often squeeze my hand with her left hand when I ask her.

Assuming she stays this stable or better we are hoping to get her home early this week. It seems highly likely we can do it and we asked Bea if she wants to go home. Her response? A smile and a squeeze.

Another Day... We'll Take It

It's been 8 days since we were told that there was nothing that could be done for Bea and she is still here. Actually, she is doing a little better than last week. Nothing to get too excited about with regards to a miraculous recovery. But, she is awake most of the day and has had moments where she is being clearly responsive. She even smiled a few times yesterday. Thanks, Lucy!

Bea's vital signs have been consistently good all week and have given the doctor's cause to talk about a return to home for permanent hospice care. We are considering this but do not know what would be covered in terms of staff/nursing support. We have been told that her external shunt can remain as if we take her home but there seems to be confusion about this with different doctors. Chris and I have decided that the procedure to reinsert the shunt is unacceptable because they will not use general anesthesia. The other option provided was to cap the shunt and we decided this is a choice we cannot make as it would escalate her death. It's not a choice we can live with today.

Assuming that we get all or most of what we feel we need for support, that we get a clear and honest answer from our insurer (and know what we're getting into instead of getting billed after the fact which is their usual course) and that Bea holds steady for the next 3-4 days we will take her home. It's her favorite place to be and I know that living at the hospital day in and day out is wearing on her, too. We're all well taken care of but... just like in the Wizard of Oz... there's no place like home. 

It's Never Too Early for Christmas

I've been asked a lot what people can do to help out the family during this awful time. Until yesterday I had very few ideas. Today I have a good one and I hope you will oblige.

Beatrice will not survive until Christmas. It was my one wish left that she would. But, no, that isn't possible.

So, Chris and I have bumped up the date. Bea is in a large hospital room that is set up for hospice care. We have decorated for Christmas and play seasonal music. Even though it's way early, please put one seasonal decoration out on display today and keep it out until the holidays are over. This will pay homage to the life and loves of our Sweet Bea. 

Sleep Revisted

Again, I wish I were asleep. But, I can't sleep. It's just not possible. My mind is racing with a thousand thoughts and nothing from moment to moment.

I wish Bea were at home, sleeping in our bed, nestled between me and Chris like she's been doing for months. She doesn't go to sleep that way. She goes to sleep in Lewis' bunk. Then in the middle of the night she wakes up and wants company. When she could walk she would enter our room on her own and climb into bed. When she could no longer do so she would call my name... mom. I would walk over to her, carry her into the room and tuck her in.

I'll never hear that again. Not from Bea. Not ever. Her weight is something I will not have to carry anymore, not that I ever complained. It was never a burden.

Bea will be moved to hospice today, at Scottish Rite. The doctors have done all they can for her. She will not awake. She will not speak. Her little body will not survive her cancer.

She has maybe a few days or possibly a week left. It is hard to tell. But, she is on her way and there is no stopping it. No amount of tears or blogging or making art or anything can stop it. It is happening.

I don't know if I'll post again or what I will have to say next. Again, I'm entering a world that I don't want to belong to. Gaining experiences that nobody wants. It is a living hell. There's no more apt symbol than that wretched place.

A Longer Stay Than Expected...

Bea is still at Scottish Rite Hospital and is not doing well. So far she has had 2 surgeries. The first was on Saturday to replace part of a faulty VP shunt. That fix went well. However, the shunt was fixed but was still not draining well. That's making her very sleepy all the time.

Her neurosurgeon relieved pressure in her brain on Sunday by tapping her shunt and taking off some fluid. Later that day she did improve some. She could eat, talk a little, smile and do some foamy sticker crafts. She also watched some cartoons and a movie with me. She was awake on and off for several hours. Everybody thought her issue was the shunt, for sure.

Monday was another story. She was not very responsive and spent most of the day sleeping. This is not a good symptom. A CT scan was done and showed that her ventricals were still not draining well. Her neurosurgeon said that she should have showed more improvement than she did and for the first time indicated that he was concerned that the issue was not just the shunt.

Her neurosurgeon revised her shunt temporarily to be an external shunt yesterday afternoon. The brain fluid has been draining well. She woke up for a couple of hours last night and was able to hold onto toys and watch cartoons but that's it. No food and no talking.

All of her doctors have now said her condition is likey a combination of the shunt not working and the cancer growing. Bea is going to have an MRI tomorrow to see where she's at with that.

It's almost 11am and she still hasn't woken up though. It's making me kind of insane. I mean, she woke up for maybe half a minute earlier and I got all excited. But, it was a tease and she went right back to sleep.

This is total hell. I'm terrified that she's never going to really wake up.

Some Days at Scottish Rite

Bea has been at Scottish Rite Hospital since Satuday morning. Her symptoms were worse and worse almost by the hour last week and so Chris and I took her to the ER. She was constantly sleeping and could hardly sit herself up. Her speech was disappearing, too. My suspicion was that her shunt was broken. And, well, it was.

She had a partial replacement of the shunt on Saturday that is not working up to par. Her improvment has been slight so the neurosurgeon will be investigating further today. She is talking a little but is still very weak and lethargic. When a VP shunt is replaced the change you see is almost immediate - if it's successful.

Her hydrosephalus is entirely treatable here and we'll be going home soon but really, really unfortunate. For Bea to survive this horrible disease would in almost every sense be a miracle. And so we want her days to be as healthy as possible so she can enjoy every possible minute.