The good news is that we have our daughter home. The bad news is that she no longer has 24/7 nursing care, and, because of that, my stress level will be higher. For wound vac changes she will have a nurse here on Monday, Wednesday and Friday, but any leaks or other issues that arise in between those times are on me.
Just getting her into bed last night set off her wound vac. Outside of Chuck just manhandling her and lifting her from her power chair into bed, it is impossible for her to do it herself without at least a little scooting on her wound–which, of course, causes the plastic draping and sealant to peel and roll.
Once she was in bed last night, and rolled to her side, I saw that the whole plastic drape had peeled away from the foam packing. The whole thing. So I had to put on more adhesive sealant. Few things in my life have ever made me feel more incompetent.
I can’t even put into words all the emotions I felt as I dealt with that wound last night: “frustrated,” “overwhelmed,” “angry” and “scared” are a few words that come to mind. “Angry” is a weird word to be in that mix, and yet there it was. Am I angry at God? I can’t possibly be angry at Chelsea. It isn’t her fault at all. She would happily change her circumstances if she could.
And because “angry” was in the gamut of emotions, so was “guilty.” I felt guilty for being angry. Each of those feelings is enough to put me on the verge of a breakdown, but both together almost reduced me to a sobbing puddle in the middle of the floor.
As I was taking deep breaths and trying to find wound vac draping in all the hospital bags, boxes and tubs, Chelsea was trying to encourage me and keep me calm. She said during and afterward that I handled it better than I did last time, but, let me be clear, I still didn’t handle it well. It’s hard to keep an even voice when you have tears stinging the backs of your eyelids.
I don’t even know how we managed to get the wound vac quiet last night. It was a series of taping and pressing, and I should have been praying, too.
The praying came later as I was crying in bed, telling God I didn’t understand about Job. I told him I also didn’t understand about babies who are born with things wrong with them.
It doesn’t matter about me: I deserve everything I get. I deserve God’s wrath, I deserve hell, I deserve every bad thing life throws in my direction, but Chelsea has the sweetest spirit of any person I know. She is kind, merciful, generous, even-tempered, considerate, and so many other things. She doesn’t deserve this. And she doesn’t deserve having me as the person in charge of taking care of her.
I hope last night was my emotional rock bottom. I hope it won’t get worse than this.
It has been two years with a̶l̶m̶o̶s̶t̶ no improvement in the wound. Dr. James said a wound on the tailbone is the worst kind of wound to heal because much of her day is spent on her tailbone. Even if she’s on complete bed-rest, how long can a person stay on her side without going stir-crazy? There are only so many hours a person can sleep during a 24-hour period, without being sedated.
We want her to get better, but sometimes I get scared that she won’t. Sometimes thoughts creep into my head which are better off remaining unverbalized. I know I’m not the only one who has thoughts like this. Cameron, too, expressed his concern to me when he came over this morning.
Chelsea got out of bed this morning so we could change her bedding due to a leaky Foley during the night, and I suggested–as long as she was already up, the wound vac was quiet and the nurse wouldn’t be here for another two hours–that maybe she could see if Uptown Style could fit her in to get her hair washed.
Karmin said she could squeeze her in at 11:30, so that would work out fine. Chelsea threw on a dress and off she went.
Later: Meanwhile, as I was sitting here working on my blog, all teary-eyed and feeling sorry for myself, recounting my midnight wrestling with the Lord for the benefit of all my blog readers, who would show up at my door but Chelsea’s IV-medicine delivery driver? I must have been quite a sight.
I signed all the delivery papers, only to find out that it was Chelsea who needed to sign everything since she isn’t a minor. He asked to sit down in the living room while he called his supervisor and awaited instructions on what to do, whether to wait for Chelsea to sign for everything or to load up the boxes and take them back.
After I located my cell phone, I called Chelsea and she said she could leave right away and be home in ten minutes. Karmin had washed her hair and was now in the process of blow-drying it.
So it was just me and the delivery driver, killing time and shooting the bull in the living room, until Chelsea got home.
I was explaining that after being in the hospital for so long she was in sore need of getting her hair washed.
I started talking about her being in and out of the hospital for two years since December of 2013.
“What an ordeal this has been,” I said. “We thought by now the wound would have been a lot further along in healing.” I don’t know what happened then, but suddenly I completely lost the battle with my hiding-just-under-the-surface meltdown. Embarrassed I held up a hospital discharge sheet in front of my face. “I’m sorry,” I said from behind the paper.
“That’s quite all right,” the driver said. “I know it gets hard sometimes, but the Lord loves you and has a plan for you.”
I couldn’t believe the Lord had sent a Christian to my door to minister to me after my tearful and prayerful night. He started telling me a little bit about his jail ministry, and I started spilling out all the things I wrote about at the beginning of this blog, about my not understanding about Job and about Chelsea’s sweet spirit, and he responded that he could answer my question about Job.
I had told him that I didn’t understand why God had to prove anything to anybody. Why did He have to prove Job’s character to Satan?
The driver responded that He didn’t, but Satan is the god of this world. Our spiritual destiny has been taken care of, if we are believers and followers of Jesus Christ. Our here-and-now, on the other hand, is a different story. We are on Satan’s territory right now, and we will have struggles. What happened to Job happens to all of us in one way or another, but God puts limitations on exactly how far Satan can go in his treatment of us. He likened it to the Royals or the Chiefs playing an away game and having to endure bad calls by referees who are possibly influenced by the cheers and boos of an opposing crowd. (He kind of lost me on that point, but, as I’m sitting here writing this now, I’m beginning to connect the dots.) When we’re on enemy territory, things will not go smoothly for us. In this world, we will face all kinds of temptations and trials, tears and troubles. We can count on that. It’s a given. Because of one man, Adam, sin entered the world, and, along with sin, also evil, pain, thorns, sickness, and death.
As long as we live here on earth, we will experience all these horrible things.
The driver told me that God may have given Chelsea the sweet spirit and the grace to go through everything she has had to go through. As a mom, he said, it hurts my heart to see her suffer and to have to endure everything she has had to endure. He told me that Satan may be trying to use Chelsea’s circumstances to hurt my own relationship with the Lord.
Anyway, that lone delivery driver was sent by God to minister to this sobbing mess of a mom this morning. For that I am grateful–and a little blown away, to be quite honest, at the timing and the odds of that particular driver being the one to deliver Chelsea’s meds. God sends out His grace via all sorts of people and packages, amen? Furthermore, if Chelsea hadn’t been gone to have her hair washed, the delivery driver wouldn’t have had the occasion to minister to me! He saw an opportunity to minister to me and he jumped on it.
The driver asked me if I had ever seen the poem about the two sets of footprints, where at first there’s the two sets, and then there’s just the one set, and the man asked God why He would leave him at a time in his life when he needed Him most. God answered him and said, “My precious child, I love you and would never, ever leave you during your trials and testings. When you saw only one set of footprints, it was then that I carried you.”
He told me that it may look bleak right now and right now it may be a very painful time, but when we come out on the other side we will see how God upheld us through it. We will be able to help someone else possibly who is going through the same thing because we will better understand their pain.
Come to think of it, isn’t that what God did, too? He came to earth in the Person of Jesus Christ, feeling our pain and knowing our sorrow, to be the perfect Mediator between man and God.
It’s amazing what God calls to our minds and when He chooses to do it.
The IV nurse was here earlier, teaching us how to do the IV meds, since this time they sent us bags and an IV pole instead of the plastic bulbs. While she was here, she also changed the wound vac, but she struggled with it for what seemed like over an hour. No matter how she tried she couldn’t get a good seal. At one point she even had me holding Chelsea’s skin taut while she applied the sealant, and still the wound vac kept making a racket. The nurse took it all in stride better than I would have. She spoke to the wound vac in a soothing tone, as if it were a tiny baby, “I know, I know, you’re not happy. I’m not happy, either.”
I told her if she was having so much trouble with it, being a professional, to try to imagine how hard it would be for me, an unqualified novice (aka bumbling idiot).
She was the second nurse in a week’s time who had likened changing the wound vac to an arts and crafts project. All I can say is, I’m glad they have so much fun with it, but it’s a struggle for me and not much fun at all. Maybe it’s because it makes me feel so inadequate, and not many things do that to me. The nurse assured me today that it just takes practice. I hope she is right, but I mostly I hope that I don’t have to get enough practice to get good at it. Hopefully the wound vac will stay sealed and behave itself until the next nurse gets here on Monday. She told me that hind ends and toes are the two very worst places to get a seal for wound vacs.
She told Chelsea, “I know you don’t want to hear this–”
“I know, I know,” Chelsea said, “I should stay put.”
“Yes, you should stay in bed,” the nurse replied.
And then in two weeks Chelsea follows up with Dr. James.
Stats for 5/29/15:
Exercise: a mile on the treadmill so far
Blood sugar: 86 (4:15, before afternoon snack)
Water: still not nearly enough. After the morning I became lax in setting my timer.
Breakfast (8:30) S: Chocolate peanut butter cheesecake shake (I ran out of instant coffee for my mocha frappas)
Lunch (12:30) S: Huge salad, 1/4 cups cashews
Afternoon snack (4:30) E: Gala apple and Triple Zero Greek yogurt
Dinner (8:00) S: Sirloin burger and broccoli, coconut crack bars (if I get some made)