This blog post is part of a series that I began for telling our story. You can read the first post here.
From this point forward, I’m going to be sharing the text of posts as they were written at the time. Some will come from this blog; others, from our CaringBridge site. I may from time to time write my own reflections after re-reading, but mostly I will just be sharing words as they were written. So much of this journey for me is revisiting what happened, and realizing just how difficult the journey was for us. And now, seeing how far we’ve come since that time.
I really want to catch up with the dates on the calendar, but to do that means I need to double-up my posts even more than I already have. So bear with me as I will post twice a day for a while, in an attempt to get better caught-up. Thanks for your patience.
This morning’s post will be two posts from June 10 (I shared the same thing to CaringBridge and blog that day), and a blog post from June 11. I will share the CaringBridge from June 11 this afternoon.
First, a prayer request post from June 10:
We are having a rough day. Things have taken another turn and Samantha has now aspirated. Her secretions keep getting thicker and she has trouble with swallowing. She is still breathing and with meds is comfortable. Her color is still good. It’s scary for us though. Please pray for us.
Prayer request follow up from June 10:
Samantha is resting comfortably now. The episode has passed, and the nurse believes that some of the fluid she aspirated has been reabsorbed.
I didn’t know that could happen. We are really thankful that the nurse was here when it happened. It was scary – she was wheezing and coughing and turning blue/purple. But now that has passed. She’s got so many secretions/mucus that is getting thicker and her ability to swallow and protect her airway has been compromised. So from now on she’ll get all of her feedings through the tube. In addition, we will be giving the meds that keep her secretions down around the clock, and giving the morphine round the clock too. And we will be trying to suction her frequently to help her.
Hospice is checking to see if our insurance covers round the clock care and if they have nurses available to work. Meanwhile our regular nurse is making herself available to us this weekend even though she doesn’t usually work weekends.
We are so thankful the nurse was here for this episode. She was able to talk us through the necessary care steps and explained to us that she doesn’t have a reserve of energy etc. to recover from things like that very easily. And she doesn’t have the strength to cough it up. She said we will notice things like that taking longer for her to recover from. We keep hoping that she will just go in her sleep instead of having such a difficult time breathing before she goes. But “we know in all things God works for the good of those who love Him.” I think that’s quoted correctly.
Keep praying. Samantha is still with us but this is more signs that the end is closer.
Blog post from June 11:
It’s been hard to keep up with both the caring bridge and this blog lately. To be honest, most days I get to the end of the day and I’m exhausted, so I don’t even feel like writing one post. But I know it’s important to keep everyone informed of what is going on, so I make sure I at least write something on caring bridge. But I do miss writing here, too.
I am tired. I think it’s why most days I don’t get sad about what is happening to us, because I’m operating on autopilot. I keep holding onto the responsibility of so much for my daughter, wanting to at least do some little thing for her. So I’ve become an expert at tracking her meds and measuring them. Once in a while I let Travis do it, but mostly I hold onto it as my job as though no one else can. And when I do relinquish it to him, I worry and second guess him on it. It’s not fair to him, but it’s my need to be in control of something.
For a while, I was just memorizing when she had her meds, but now I’ve gone to taking notes. A lot of that has to do with her needing different meds at different times, so the combinations are different each time. She’s on six different medications now. Two are every 12 hours, two are every six hours, two are every four hours. And she gets formula every four hours as well. Part of the note taking is because the schedule has changed a couple of times since we’ve been home.
I have a feeling that when she does die, I’m going to sleep the clock around – both out of sorrow and from sheer exhaustion. I’ve already started to figure out some things to keep myself and my mind busy when this is all over – painting at my parents’ house (or maybe even my house), exercise, getting back to work, writing, organizing. And now I look at my daughter again and I wish so much that I didn’t have to think about what’s going on or eventually miss her. I hate knowing that she will be gone soon. After everything we’ve been through with the pregnancy, the hospital stays (hers and mine), and all of this year, it sucks that we have to come to this. I HATE IT!
Next post coming this afternoon.