The Final Leg Of This Part Of The Journey
Looks like we're headed down the home stretch. Charlotte is still mostly alert and can give us head nods and point to fingers but little parts of her central nervous system are shutting down. She can't open her mouth right now (we're working on that) and she’s not swallowing so we might get an IV pump just to get her liquids and nutrients. The latest protocol of drugs, including morphine, has actually helped a bit.
She slept on our laps all night last night (Rachel and I took turns) and I think it was the best night of sleep we've all had in a long time.
It's very important for everyone to know that most of the time, she's in no pain. We often ask her if she’s hurting anywhere and usually it’s no. She's just hungry and thirsty and occasionally uncomfortable/itchy (from the morphine) but not in pain. The Noah’s Children hospice nurse is downstairs now checking on her.
It's also important for everyone to know that as we get closer to the end, I think I'm doing better with things. I've already accepted a lot of it but didn't want to totally let go and I have been having a rather hard time with things the last week or so. I still follow a bunch of Caringbridge sites and the usual progression of things in the terminal stories is that once the morphine is introduced, the end is not far away. So, understandably, I've been kind of dreading that part of it. Dr. Archuleta, the primary hospice doctor, prescribed morphine Tuesday night and I went to pick it up yesterday. It was a tough, lonely drive home after that and I felt myself almost breaking down more than once. But as I got closer to home, things seem to lighten up. Not sure why but I was at least functional when I got there.
I prepared the latest doses of everything, including the morphine, and without a lot of fanfare, I gave her the first dose. I was determined to be the one to do it and I was remarkably calm about it. I think I finally (almost) let go. Her reaction to everything was great. She became chatty and the readers who came by kept her engaged all afternoon.
She started fading around 6pm and by the time Miss Christy came by with a tasty bottle of wine, some good books, and The Sound Music video, she was pretty out of it. We also really first noticed that she couldn’t open her mouth right about then.
I’ve been using the voice memo app on my iPhone to record little snippits of CJ saying a few choice statements like “I love you Granny.” Looks like that was a good idea Aunt Jamie Jamie Tamm Tamm.
As I was holding her throughout the early morning hours, I would wake up and check on her breathing, fully expecting her to not be. I wasn’t scared. I wasn’t sad. I felt very matter-of-fact about the prospect that I might be holding CJ’s empty cocoon. When everything is right in front of me, I do and feel my best. I have the most trouble when I’m not around it and my mind wanders. I’m pretty good at dealing with the situation at hand but not the “What-ifs.” Pretty soon, I won’t have any more “what-ifs” to worry about and that’s mostly a good thing.
There are still so many positives and little bonuses here and there. This morning, CJ was still sitting on my lap and we were watching “Superwhy” on PBS. The Alpha-Pig has an alphabet song that ends with a “big thumbs up!” and CJ was right there with hers! She likes the show and obviously knew what was coming. I don’t remember ever noticing that before so it was a very cool moment.
Karen Giles came by this morning to read and the last book she pulled out was The Very Hungry Caterpillar by Eric Carle. It’s always been a favorite of ours and has taken on new meaning recently. Thanks Karen (and her husband!). Her daughter, who is a long, long, LOOOOOONG time member of Romp n’ Roll, drew a snowman picture for Charlotte and CJ liked it so much, she wanted to hold it. We ended up taping it to a chair so she can see it.
Since the start of this post, the entire hospice team has been by except Dr. Archuleta and he’s slated to be here any minute now. We spoke to Nurse Cathy about drug options and where we might place the oxygen pump that was delivered last night. With social worker (?) Cathy, we covered some of the proper things to do following CJ’s passing and had a chance to do some actual planning out loud which was very helpful. We even spoke at length about the memorial service. Rachel made a list. That’s a good sign.
We had to give CJ another dose of morphine and she was not happy about it. Since she isn’t swallowing, it only takes a few minutes for it to come dribbling back out but it absorbs quickly under the tongue so it’s still effective. Uncle Kolbey made faces at her to cheer her up.
Wow! It’s now 11:00pm and what a night we’ve had! First off, Dr. Archuleta came and checked out CJ. He had to see in her mouth to make sure there wasn’t some kind of infection or sores keeping her from opening her mouth but she wasn’t very cooperative so I got the wonderful job of holding her head while he stuck a tongue depressor in there to pry it open. No one was happy about it. Once it got in there, though, it really wasn’t that big a deal and she was ok. But I wasn’t. Just having to force her to do one more thing she vehemently didn’t want do was a little too much for me and moments after Dr. Archuleta was through, I pretty much lost it in front of everyone. Good thing Rachel and Aunt B were there.
How wacked is this? I wake up in the middle of the night fully expecting and ready to be holding CJ’s lifeless body and I’m OK with it yet when I participate in a necessary procedure that ends up not being all that big a deal, I’m a mess. Man! My brain candle is dripping wax.
Well…Dr. Archuleta prescribed intravenous versions of all the oral drugs we had been trying to give her and some new stuff and finally, during the evening, Patty, a Noah’s Children nurse (quite the character, I must say) came by and gave us a tutorial on the protocol. The most complicated part is the mixing of the Atavan. No problem, though. We’ve got it! CJ is all about her central line. You could put motor oil through her Hickman and she’d be fine with it.
Still no open mouth yet. Which means no eating or drinking. She won’t even take a wet washcloth. Dr. Archuleta mentioned the new drugs might relax her mouth/neck muscles enough to have a brief reprieve, which would allow us to try some very soft food for her. He also (sort of) urged against IV fluids and nutrients if we can’t get any real food into her as it would probably make things worse (as in more painful which Rachel and I are not going to allow). We’ve actually heard this before so it didn’t surprise us.
If she doesn’t open her mouth, she won’t take in any fluids. If she doesn’t take in any fluids, she’ll become dehydrated in a couple days, her kidneys will begin to shut down and she will be gone before Christmas. If she opens her mouth and somehow has the ability to swallow, she’ll linger a while longer. There will be no feeding tube or IV fluids. Forcing her to stay longer simply because we don’t want her to go would be inhumane, unfair, selfish, and unkind.
Pastor Ed from St. James The Less came by as well tonight and we discussed the memorial service and what we might like to have/do. As I’ve mentioned before, I’m not one for officially organized religion but Pastor Ed makes me think which is why I like him. I also like to pick his brain about all kind of things, not just spiritual matters. We also love St. James The Less because of everyone's commitment to each other. It's the very definition of "community" and "fellowship" and we love everyone there.
We’re pretty sure there will be a large number of people wanting to come and celebrate CJ’s life and the energy she put out into the world so we’re thinking it will be held at a larger venue than SJTL. Blackwell Auditorium at Randolph-Macon College Campus comes to mind as a possibility if we can get it. It will be a kid-friendly service and there will be lots of music. I will be contacting people to see if they’d be interested in playing so keep your ears peeled. The final song has to be a big group-sing of Frosty The Snowman.
Not long after Ed left, Critical Care came by with new supplies reflecting the new protocol and not long after, nurse Patty showed up with the drugs.
After I administered her first dose of IV drugs, it was like she finally let go and zonked out. I put her in her downstairs bed and at last check she was sleeping very peacefully.
That doesn’t mean nothing was going on. In fact, with the introduction of the IV drugs, a positive change seemed to come over the house. I’m not just saying that. Most everyone here tonight felt it.
Tonight, the house became a hub of activity, buzzing with positive energy and bringing the mood up out of the pits.
Jay Campbell, CJSTUF.org’s webmaster and IT guru, was here helping us fix stuff on the website.
Our neighbors, Bob and Jamie Flanagan came by to visit bringing the newest member of their family, Caleb, to the “show.” Their son Larson is one of Charlotte’s oldest friends. He and Wyatt are the two boyfriends.
Dr. Anna Madland (chiropractor extraordinaire) dropped by with her table to give Rachel, CJ and me adjustments. It was very nice! She also got a bite to eat.
Beth (our Disney World paparazzi), Sean, and little Dylan Harris came by to read/sing to CJ. Sean even brought his guitar and quietly played/sang to CJ as she slept. It was so touching. He’s even written a song about all this. Beautiful!
At one point, almost all of these things were going on at the same time creating a very positive vibe. Noisy too! Even nurse Patty commented on it. It’s how a passing should feel. It’s how I want the memorial service to feel. The tears are still coming here and there and Seth’s song had us all crying but that’s ok. It felt healthy. That’s what I need to keep hold of.
As usual, I implore you to love on your family and friends like you won’t see them tomorrow.
Beautiful, touching post ~ and I am comforted by your stength. I'm praying for Charlotte to be as comfy as possible and for you all to cherish these moments together. Love you guys!ReplyDelete
Rachel, my aunt who lives in Ashland sent me a link to your blog. I just wanted to tell you that your family is in my thoughts and prayers daily. My mom who was 56 passed away from a grade 4 brain tumor 2 years ago, and I had her home the last 3 weeks -so I know this journey all too well. It's heartbreaking to watch, and I so hate that anyone else has to go through it. Sending ((hugs)) to your whole family.ReplyDelete
Your incredible strength throughout this journey is just that. I have no wise words, just to let you know your little girl has touched the lives of so many. I am a stranger, and yet I feel as if I know you all from your eloquent blogs etc.ReplyDelete
Lorri Blair Mercer brought little CJ into my life. Grave, and moving as the situation is, I feel happy that she did. I keep you all in my daily thoughts and prayers. Please feel the love around all of you from near and far.
Virginia Sharp (Savannah,GA)
I just finished reading the last three blogs. I am so in awe of you both for your eternal love for your daughter. You both are selfless and THAT is the greatest gift you have given to CJ. Letting our loved ones go to the remainder of their journey takes a monumental effort. YOu both receive the highest kudos for your unselfishness. God bless you all, especially Charlotte. I have been wearing her bracelet 24/7 for over a month now. During the past days,I find myself fingering it often and turning it around on my wrist. Please, please know that each time this happens, my prayers are truly with Charlotte and her beautiful parents!ReplyDelete