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.

Looks like I actually got ahead of the calendar, so we are back to one post per day. I will still be combining posts from a few days, especially since towards the end of Samantha’s life, the posts got shorter. We spent more time focusing on being present with her. In addition, as she slipped away, there was less and less to share with friends and family. We are headed into the final weeks now.

I titled this post “Fighting to breathe” because it described us as much as our daughter during those last days.

CaringBridge Journal entry written by me on June 26, 2011:

Last night was the worst night yet. Samantha’s breathing got very ragged and raspy, and we ended up calling the hospice line for help. The on-call nurse, in conjunction with the doctor, ordered oxygen and a nebulizer for Samantha which were delivered in the middle of the night. As we lay awake with her, listening to her breathing get more and more labored, we realized that church in the morning was going to be impossible for us. So my dad filled in for Travis this morning and the two of us tried to get a little extra sleep.

The oxygen seemed to help her somewhat, though I wonder if it was more that it helped us to sleep because over the noise of the machine we couldn’t hear her wheezing. Samantha’s regular nurse came today and spent a few hours with us. She gave us some new orders, which included ceasing Samantha’s feeds and shifting her meds around. Now we are only giving Samantha morphine, Tylenol 3, Ativan, and phenobarbital. And we are giving all but the phenobarb more often than we were. All of this is to keep her comfortable as much as possible. The nurse believes that she will just stop breathing, and that the end will come very soon. She doesn’t know exactly when, because Samantha’s breathing is still very even albeit shallow. So this afternoon we went online and picked out a bulletin cover for the funeral and ordered it. We’re making sure a lot of the details are done so we don’t have to worry about it when she is gone. And we have been spending as much time as possible holding her and just spending time together as a family.

We have had some folks want to stop by, and I think at this point we are just going to stick to family. I’m sorry to all of you who would like to see her again. I wish we could have taken her to church one more time but I don’t think taking her anywhere is a good idea any more. Truthfully we just want to be the ones with her when she goes, and I am struggling with allowing even Travis, my parents or my sister to hold her when I just want to hold her myself. So adding others to the mix would be even harder.

Please keep us in your prayers tonight and as we keep this final vigil with our little girl. Each moment is so precious and we are soaking them up as much as we can. We also try to rest, but it is hard to go to sleep when it could mean the last time we see her. At the same time we really do just want to release her into the arms of Jesus. We are at the end of our abilities to care for her, and we have to release her to God.

When she does pass, we will begin with calling hospice and family. We will share via the internet once we know that immediate family has been notified, although if she passes during the night we may not post anything until the morning. We will also share information on the funeral as soon as we can, since we will have to make plans based on travel arrangements for family. All of you have been such a blessing to our family. Thank you.

Advertisements