So Much Pain

Warning: Downer Post Ahead

Sorry I haven't updated this blog in a few days. It's hard to share when the news is not good or when there's no real news at all. Haley has continued to suffer with this stupid spinal headache. Last night I was awakened by her cries. So sad to be so helpless (her and us). We were in touch with our family doctor all weekend. All of our PCPs are wonderful and so dedicated. The one on call this weekend was able to speak with the neurosurgeon covering for the vacationing Dr. H, and a new oral med was tried. We have also resumed IV fluids at home, increasing the frequency from three times a week to every night. She really needs a blood patch, but our docs want to speak with them first. So.....we wait. And we give meds. Lots of meds. Larry has set an alarm on his phone to give meds every three hours around the clock. It's a bit complicated because they are different meds, so he has resorted to using Ziploc snack bags and writing the time on the outside so he doesn't get confused in the middle of the night.

How Much Pain Can One Person Take?

I keep asking myself, "How much pain can one person take?" and I also find myself thinking, "If this were an animal, someone would do something."  Larry and I are fried. This is so stressful watching her suffer so. And then there is the physical fatigue. I called a good friend this morning and "vented". She told me to quit being so nice. I'm not sure anyone's ever said that sentence to me! She meant that I need to make more noise and advocate for Haley. She said, "even if you have to call Dr. Henderson on his cell phone on vacation to get her some help, do it." I'm not to that point yet, but getting close. (Don't be surprised when I go all "John Q" on someone. Ha ha. If you've seen that movie, you know what I mean!) I called the hospital in Maryland and asked to speak to Bob, the PA. They asked who I was and I said, "A patient's mother" (death knell). The next thing I heard was the telltale voice mail recording. (Cue the crickets.) I left a message, but who knows how long it will be in voicemail purgatory before he gets back to me. It's hard to be patient when she's hurting so badly. ("Lord, give me patience NOW.")

I actually got to go to church yesterday and saw so many who asked about Haley and many who just wanted to give me a hug. (Presumably they didn't want to make me talk about it. So thoughtful!) Anyway, it was good to see folks again. I know that many, many, are praying, which is good. But I also wonder why nothing seems to be happening. During the sermon yesterday, it was said that God is not up there saying, "Wow, I didn't see that one coming!", that He has all things under His control for His glory. Good message, but I'm having a hard time getting it to go from my head (where I agree) to my heart (where I don't see it). So now you know how to pray for me, too. "I believe, help me in my unbelief" (Don't know the Bible reference, but it's in there somewhere!)

Other News

In other news, Haley's Angels (the volunteers who come and sit with her) are back on the job. Such a blessing. I have so much school work to do (I'm taking a graduate class this summer--dumb, I know but I have to so I can graduate on time) and have a hard time getting my mind on it. I tend to walk around the house picking things up and putting them down in other places. I believe it's called "brain fog." Anyway, I'm on vacation this week (ha ha) so I have time and with the Angels here I can hopefully get caught up on the school stuff.

Fund Raiser

I hate to talk about this, but plans are underway for a fund raiser. We found out that we will be responsible for 30% of the hospital bill, which at the present is an unknown amount. A dear friend is planning something big and fun, but will not schedule it until Haley is well enough to attend. I hope this will be a combo fund raiser and celebration of her renewed health. Also, I am in the process of getting zipper bracelets which I wanted to give away, but this same entrepreneurial friend says I should sell to help pay the hospital bill. As you may remember, the folks who have had this type of surgery refer to themselves as "zipperheads", which they swear is a term of endearment. I will have bracelets that are made of zippers that people can get and wear in honor of Haley and to remember to pray for her.  More about all of this later. Thanks again for walking this long, rocky road with us. We couldn't do it without you!

Thanks for reading my random musings. People have been saying that they enjoy the blog. Hope this one doesn't change that, but frankly, it's my therapy. Cheaper and I don't have to leave home.