our girlie is still hanging on. She's had slowed labored breathing since last night.
She appreciated everyone who came by yesterday. And was mostly awake but too sleepy to smile.
This morning she let me know she's ready to go. A huge comfort to an aching mommy's heart.
She was awake all afternoon looking at family memory books with all of us. And doing lots of "smiling on the inside" as Maya calls it.
She signed the only sign I've seen from her in days. It was "Maya".
Saturday, April 29, 2017
We're thinking this may be our last day with our Cicily. We know many people want to visit and we want everyone to be able to come who wants to. Cicily would want to pass on her love to all who love her. So we've decided to set up some visiting hours. You are welcome to come to our home today between 2-4 for a quick visit. We can't promise Cicily will be awake, but that's been a good time for her the past few days. She had a peaceful night and is still sleeping. We'd love to see whoever wants to come. Call, text, email (janalyn at gmail) if you need an address.
Friday, April 28, 2017
This morning we had a home visit from the hospice team (dr, nurse, social worker, resident dr). Home visits are awesome. Hospice is awesome.
The doctor confirmed what we had suspected. Cicily's new symptoms are not just bad days they are end of days. After examining Cicily and hearing our report of the past week, she gave us the news. The food and water (TPN) Cicily has been getting through her IV is not being used by her body. It's seeping out of her veins and into her stomach, lungs, abdomen, etc. Essentially, continuing to feed her is doing more harm than good. We could choose to continue her food or stop it, but the result would be the same. Her body has been amazing. Doing so well with its incredible limitations. Her spirit is even more amazing. But, her body is just done. It can't function well enough to keep her spirit living in it much longer. So, Chris and I made the awful and heartwrenching; but also simple and peaceful decision to disconnect Cicily's TPN this morning. The dr said she could be with us for a few more hours, days or weeks. Our best feeling is we have a day to three more with our girl.
And while cousins were here, a chicken got plopped on Cicily's lap by Sophie. (I think she was shocked when I told her she could do it.)
Then we had a little more family time. A spontaneous Small World dance and song was performed and enjoyed.
And in the midst of it all, I learned how to give IV morphine. Now Cicily's on a morphine drip, with doses of lorazepam (anti-anxiety, end of life med). Hopefully she can be comfortable but still conscious enough to enjoy her last couple days on this earth.
Dying's not all fun and games, even for Cis. Sometimes it hurts and is very sad.
Cicily's nurse Tamara came to visit today. She brought Cis a gummy bear keychain. Gummy bears are their class' "thing". Her teacher came later with an armful of sweet cards from her friends in class. They miss her smile.
Grandma got a hug/headlock
Maya got a big laugh dancing Lucy on Cis' belly.
Maya helped Cicily read her cards. Cis loved the cards and her Maya time.
For most of the morning Cicily was pretty upset. She brightened up completely when her sisters came home. We mostly all hung out on the bed this afternoon and played.
Wednesday, April 26, 2017
Cicily woke up at 4 am needing meds. She stayed awake sad and fitful until 6. Then she feel asleep and slept peacefully until noon. Then she woke up crying and I gave her more meds. She stayed in bed for the rest of the afternoon. Playing and reading with Mom, Lucy, Sophie and Maya. She was fairly "out of it" for the most part today. Dad and I took turns holding her in the green chair tonight and eating dinner. Then she was ready for bed by 6 pm. We're starting to think this is looking like a new normal instead of a string of bad days. But the next few days will tell.
Tuesday, April 25, 2017
We had an appointment this morning so I got Cicily her sponge bath, dressed and in her chair ready to go. She cried the whole time. I felt awful. It reinforced why hospice is so amazing in not making people go anywhere, they deliver meds, make house calls, etc. I can't say enough good things about hospice so far. Cicily was good once we got out in the car (though that may be due to me giving her morphine and lorazepam) and the appointment was quick. When we got home she just wanted to lay in bed (and have her clothes off which she laughed about - hey whatever makes a dying girl comfortable I say). We listened to music, and played swipe the ipod games. She took a tiny nap. She was legit happy laying in bed all day. As we were playing and laughing, I said Cis what am I going to do without you. She looked a bit concerned. I just couldn't think of any positive follow up. I'm just going to miss her. Like every single day for the rest of my life.
In the afternoon Grandma came and brought a silly clown nose. Cicily and Sophie enjoyed antics with that of course! And there was nail painting. It's Minnie Mouse nails today.
Cicily continues to have fluid in her stomach. Drained 2.5 ounces at lunch and another 6 at bedtime. We're suctioning clear secretions all the time from her trach, which leads us to believe she also has the fluid in her lungs. She's losing a bit of weight. This all adds up to what the hospice nurse mentioned to us about bodies not being able to use TPN at a certain point so it gets stored elsewhere. The only question is, is this another few days of bad and then her body will work for a while or is this a new normal.
Monday, April 24, 2017
Saturday, April 22, 2017
Thursday Cicily went to school for her typical (as of the last month) 3 hours. This schedule has been working very well for her. She'll wake up a little late and lay in bed listening to music for a while. Then get ready for the day and have some Mom and Cis time reading or something. Then go enjoy her afternoon at school.
In the evening on Thursday Cis started feeling pretty blah. We snuggled for a bit in the green chair then she went to bed. She woke up and had meds once in the night.
Friday morning she wasn't feeling great still. She had some poop with a little blood in it, which is somewhat to be expected with her bowel issues. So, to cheer Cicily up, we gave Lucy a bath before school. As you can see, Cis LOVES this because her job is drying off a wet, funny looking puppy. Lucy doesn't love it so much, but Cicily gives her tons of dog treats after, so she puts up with it.
Cicily wasn't feeling great at school, but had plenty of distractions from friends and her loving nurse to keep her happy. She had a BM 5 times in the past 24 hours, so we were hoping that would make her feel better. But when she got home, we just ended up having a snuggle for the rest of the day. Thankfully Grandma was hanging out with us so she could get anything we needed/clean the house while Cicily and I snuggled. Sorry Grandma, I definitely got the better end of that deal. When Cicily really isn't feeling well only Mom snuggles or morphine can really make a difference.
Grandma helped realize that Cicily's stomach was full. So thankfully she has a g-tube and we can just pop it open and use a tube to get whatever is in there out. We drained 8 oz of fluid. Hospice said this was likely to happen. Towards the end your body can't use whatever food you're giving it (even when it's the most basic it can be and fed through your veins) and your body ends up storing it in other organs like the stomach and lungs. So not a good sign, but I'm grateful we can at least use the g-tube and drain her stomach.
Even with the new issues and obvious pain, Cicily still managed to smile and laugh on Saturday while she helped clean her room, have a visit from some special members of our church, and attend a family party and a friend party. At night we did another draining and got about 6 ounces. Surprisingly, her respiratory infection seems to be improving. Who knew it could do that without antibiotics?!
Thursday, April 20, 2017
Cicily continues to get a little more distant. She has more frequent staring spell seizures. Her respiratory symptoms are staying fairly steady. We're feeling more of the marathon here rather than a sprint to the finish. And as long as that face keeps smiling, a happy marathon is awesome.
Wednesday, April 19, 2017
Monday, April 17, 2017
My friend Cherri finished putting her expert touches on our family photo shoot today. Here they are! They are the perfect last family photos. How big should a family picture be on a wall when it's the grand finale of us all together?
If you are interested in seeing more of Cherri's work, or to schedule your own session, check out her website: www.shuttersparkphotography.com
These photos would already mean the world to me, but they are even more full of love and happiness because friends cared enough to make them happen. Love you Cherri and Shanell
Saturday night we had a family Easter party. There were lots of cousins, eggs, and swimming.
Sunday, April 16, 2017
Today was a good Friday indeed!
(If you're a medical supplier please forget you saw this post. We do also actually use these medical devices as prescribed, but there have to be some big perks of a house full of medical supplies.)
So many thanks to all of Cicily's visitors. She is absolutely loving this time and seeing you all. Thank you for making her a priority. I hope you don't all cry too hard driving home, as I'm sure I certainly would. And come again, whenever you like!
Friday, April 14, 2017
This girl would have been so popular in the 80s!
So Wednesday was such a good day. But Wednesday night Cicily woke up a couple times crying. It was definitely a sad cry instead of a pain cry. It broke my heart. I think she was getting sad about what's coming. I didn't really want to ask her today because she doesn't like talking about sad things. So we gave her just lorazepam and she was able to go back to sleep. Then she woke up again and gave it to her but she was still upset so we did morphine. I'm told sometimes hospice patients feel like they have a hard time breathing so the combination of those two meds helps.
Cicily didn't feel good enough to go to school today. So she stayed home for another Mom and Cis day. But she did say she was up for visiting Grandma at work, so we did that too!
The hospice nurse came today and said again it's very typical of peds hospice patients to have really good times and then have bad days come from nowhere. It was very reassuring. We absolutely love and enjoy the good days. But it really makes me feel like I'm going crazy. I told Cicily's school nurse that I'm glad she and Chris see Cicily's up and down days too or I would really feel like I was making things up. The good days give us such hope and make me question our decisions. A roller coaster doesn't even begin to describe it.
Tuesday, April 11, 2017
Monday ready for school, looking good in her cute outfit. I can't remember why she was signing Sophie, but I love the goofy smile.
Cicily has been sleeping VERY well the past week. We've determined that her stomach issues were due to so many antibiotics and a build up of yeast in her gut. Now that we have the yeast under control, her intestines have been very quiet, it doesn't hurt her to move her legs and she's been sleeping well at night. Hooray
I went to a craft store to buy some things for her funeral. When the checkout lady was asking me what project I was working on I said, a sign in book... I couldn't get the words, for my daughter's funeral to come out.
Then while Cis was at school my Mom and I went to the florist to talk about casket sprays. It's going to be beautiful and perfect for my girl.
It is the most out of body experience to make preparations like this for your daughter. I go and do it, but feel like it's not necessarily me saying words like casket, funeral, 10 years old, etc.
Sunday, April 9, 2017
Friday Cicily took a couple hours off school and got to do this. Maya reading books to her is definitely her happy place. Maya has a library in her room and she checks out books to Cicily and Sophie. Cicily signs Maya to ask for Maya's library all the time when Maya's home.
Aulton's little sister Lyla was so sweet reading a Minnie Mouse book to Cis.