Setting Up the HBO (and I don’t mean cable)

Chelsea’s hyperbaric oxygen therapy begins tomorrow, but we don’t have a time, yet. It could be as early as 6:30 and as late as 10:30. We are hoping she can get the earliest time slot. The treatment will last for ninety minutes and she can’t take headphones in with her. They did say she could have something for anxiety since she is highly claustrophobic. Her plan is to stay up as late as she can tonight and hopefully sleep through as much of her treatment as possible. We have been praying that this therapy will be effective and that she tolerates it well. We appreciate any and all prayers to that end. Thank you!

Later:

Chuck and I visited Chelsea tonight. While we were there, her nurse came in and said that HBO is off for tomorrow. They are trying to square away where she will be going to receive treatment. If she goes to North Kansas City, they will have to do a chest x-ray first and then be set up for HBO therapy. If she goes to Liberty to have it done, she won’t have to have the chest x-ray because Dr. Logan and Dr. Robinson are already on her team of doctors, and she’ll be able to start the HBO right away. Anyway, they’ll know by Wednesday morning where she’ll be going.

Zzzzz

This is how tired I’ve been lately:

Chuck just said, “Dirinda, when I yell and scream out in pain in the middle of the night I expect you to get up and do something about it.”

“What? You mean your tennis elbow?” (I know he’s been suffering for over a month with tennis elbow and mentioned it a night or two ago when he was sleeping with it bent and then tried to straighten it out.)

“No!” he replied. “I had a cramp in my calf and it still hurts! I’m over there screaming in pain and you’re like ‘Zzzzzz.'”

Chelsea chimed in and said, “Oh, yeah, I heard you.”

Chuck said, “Are you kidding? JENNA probably heard me from across the street! I bet EVERYBODY heard me, but not Mom. She’s over there snoring away.” Oops. Sorry ’bout that.

SUGAR BUSTERS! and an Emotional Night

I realize that watermelon is not on the SUGAR BUSTERS! “legal” list, BUT summer isn’t very long and I can spend the whole rest of the year not eating watermelon.

Here is the short list of foods I have to avoid (mostly anything white): basically anything made or breaded with white flour, potatoes, rice, bread, pasta, bananas and corn (even popcorn–but I won’t be avoiding that anytime soon). Carrots and beets (and, of course, my beloved watermelon) are surprisingly also on the list of no-no foods (or poison, as I may refer to them from here on out). Most of the foods on this list will be hard for me because I have grown up eating them, but as Kendra says it’s not as hard as I might think it is. She’s right. And she’s also right when she says you crave what you eat. If you eat celery and cauliflower, you begin to crave celery and cauliflower.

Also what I have been doing is setting my FlyLady kitchen timer for fifteen minutes at a time to remind myself to drink more water. Every time the beeper goes off, I take as many swallows of water as I can (about six or seven–sometimes even nearly half a sixteen-ounce bottle).

The treadmill is still coming along, but I haven’t been on it, yet, today because I hardly got any sleep last night and then had to leave at 5:20 this morning to pick up Cameron from work since his car is in the shop and the parts didn’t come yesterday as scheduled. To top that off, the phone rang at about a quarter past eleven, just as we were getting ready to go to sleep (or may have been half alsleep already), and I saw on the phone menu screen that it was Cameron–and he never calls from work.

Chuck said into the phone, “Why are you calling?” or “What do you want?” or something of that nature and then followed it up by “So you’re on your way to the hospital now?” Chuck thought he would pull me in on that one, but I only half-believed that Cameron had gotten hurt at work. Then, again, he never calls from work so that thought definitely landed within the realm of possibility.

Cameron said the oil in the lead pot caught fire and the building was evacuated. For two hours. Everyone alternately stood and sat around in the parking lot while the fire department got everything under control. They almost sent everyone home. It was either that or have everyone wear respirators for the rest of the night because the smell was so bad in the building. Enersys decided on the latter. Cameron didn’t have to wear one because he was far enough away from the affected area that the smell wasn’t too bad there.

After I got back from picking up Cameron this morning, I fixed his breakfast and decided to lie back down and try to sleep for at least half an hour more. At eight I had to take Chelsea’s IV med out of the fridge and start thinking about making the trip back to Centerpoint for Chelsea’s followup with Dr. James.

She’s not home for long probably. They reapplied the wound vac that we took off a few nights ago when the tubing pulled as Chuck was attempting to help her back into bed. I thought the home health nurse was going to put it back on yesterday, but Chelsea told her no. She said she wanted to wait until her doctor’s appointment because it would be less hassle getting in and out of the car/bed, etc.

The wound is so significant that it’s hard to get a good seal on it with the vac. The home health nurse has even said to Chelsea, “I know you don’t want to hear this, but I don’t feel like I’m qualified to give you the care that you should be getting to take care of this wound.” She said today that she feels Chelsea is just barely treading water here and that she will never heal if she stays home and doesn’t get round-the-clock nursing care. The wound is in such a bad spot that it’s hard to get a good seal, and then the drainage from the wound seeps up under the adhesive and next thing you know the whole thing has pulled away. She went over a few things with me in case I have to step in and try to reseal the area in between nursing visits (at least until they send her back to Kindred, which is the best place for her, according to the home health nurse).

Although Chelsea has plenty of memory foam on her bed, it’s still not an air-flow hospital bed, so, despite her best efforts, there is still going to be some pressure on her wound sometimes.

The new power chair is wonderful, in that it reclines and gives her a way to redistribute her weight, so that she’s not on any particular part of her body for too long, but it’s still not idyllic for keeping off her wound.

The home health nurse also told her that, as good as it is to stay off her wound, Chelsea still has to consider that for every day she stays in bed to help her wound heal the less physical strength she will have when she eventually has to get out of bed.

Dr. James is talking about flap surgery for Chelsea. In fact, they didn’t even set her up for her next appointment because they are trying their best to get her back into Kindred and in for a flap surgery, which will be done by a plastic surgeon.

Catherine, from Dr. James office, just called and said the plan is to get Chelsea evaluated by the plastic surgeon to see if, in his opinion, she needs the surgery. Then Medicaid has to approve the surgery. The surgery will not be done at Kindred South, as she was initially told earlier today in the doctor’s office, but instead will be done either at Research or Centerpoint. She will be transferred from Kindred (in the Northland) to Research or Centerpoint, wherever the surgery is to take place. First things first. The insurance has to be figured out, along with the physician’s eval.

This has been quite an ordeal, I’m telling you. If not for God, how would any of us get through all this? Chelsea has coped as well as she possibly can, better than anyone else could. Yes, she has her down times, but who wouldn’t, stuck in the hospital for months out of the year?

Having to deal with me and my bouts of frustration has not made it any easier for her. Thankfully, such bouts are rare, but a few nights ago, it was late and we were all going to bed. I was so tired I had actually thought about going to bed a couple hours earlier and then got caught up in Facebook and didn’t. So I was taking my nightly pill and getting dressed while Chuck was trying to help Chelsea get into bed from her power chair. She had wound the tubing to her wound vac (two different kinds of “wound”–read it again…lol) around the back of her chair to keep it from getting caught in her wheels, but forgot to unwind it before she stood up to get in bed. Chuck was lifting and trying to boost her, not noticing how taut the tubing was being pulled. I stepped into the room (I may have been called; it’s not clear now) to see that the tubing was most likely ready to be pulled right out of her wound. “STOP!” I shouted. “The tube is caught!” Meanwhile, the vac started making all kinds of weird gurgling sounds and eventually started its incessant beeping.

“Do something!” Chuck said. “What do we have to do?”

“I don’t know,” I whined.

“Well, you have to fix it,” he said.

“I don’t know how to fix it. I’m not a nurse.”

“Well, you have to do something.”

“I’m TIRED!” I said, whining again. Too tired, really, to think what it was that I was supposed to do–even though it was pretty basic. More time consuming than I wanted it to be, but still basic. Of course, what needed to be done was just to peel off all the adhesive, remove the sponge from the wound, and unattach the tubing, etc. and then redress the wound the way I had done prior to the vac being put on.

Sometimes I think I would be better off if the Lord would just slap a piece of duct tape across my mouth. Chelsea didn’t need to hear my whining. It made her feel worse than she already felt and then she started crying. Then, of course, I felt absolutely horrible about making HER feel horrible, and I started crying, too.

By that time Cameron had come in from his room to see what the commotion was all about. If we weren’t a sight: Chelsea and I, sobbing in despair, while Chuck and Cameron stood helplessly in our midst, not having a clue what to do with two crying females.

So I’m fumbling through what feels like fifteen hospital sacks to find needed supplies to dress her wound and cannot for the life of me come up with even one ABD pad when at one time I had run across a box of about ten! Surely they weren’t all used up! I was tired and frustrated and the only thing I felt like doing was crying some more, but I was trying very hard not to do that. I wasn’t making any sounds, but, from the hallway, where the males of the family had relocated for privacy’s sake, Chuck could see my face all scrunched up and knew that I was about to lose the battle with my emotions, again.

“What’s the matter?” he asked.

“NOTHING!” I said. Frustrated and angry, but trying to keep my voice from quivering and myself from bursting into more tears, I retorted. “I don’t know how I’m supposed to dress this wound if I can’t find a stupid abdomenal pad!” Then, of course, I had to find the Sure Preps, and all the other things I needed, too. I don’t know why in the world all those supplies were in all those plastic bags when three-fourths of them I didn’t need. The next day, I vowed, I would go through and organize EVERYTHING in those hospital/visiting nurse bags. There were PICC line supplies, bladder supplies, colostomy supplies, boxes and boxes of gauze, syringes for who-knows-what, lots of swabs on wooden sticks, tubes of lotions and creams and body-cleansing products, bottles of saline, spray bottles of wound cleansers, even one of those shampoo caps, lots of tape varieties, wound measurement papers, alcohol wipes and misplaced All-Cares and Sure-Preps, just lying loose in the bags, and four or five pair of medical scissors. (The next day I sat at the dining room table and categorically bagged everything up in zip locks, separating it into two hospital pans and designating the top drawer of one of Chelsea’s dressers for the overflow supplies.)

Necessity being the mother of invention, that night I finally settled on a Poise pad to cover the wound, and I must say it worked very well. (Even the home health care nurse mentioned on her next visit that the Poise probably worked even better than the ABD pad because it covered a larger area and was more absorbent.) Of course, the next day, I found four or five abomenal pads, scattered among the fifteen bags of other supplies (not really fifteen bags, but it felt like that).

I’m a mom. It doesn’t matter how tired or how overwhelmed I may feel at any given time or situation my job is to “suck it up,” as Chuck would say, and just handle it. It certainly does no one around me any good for me to lose control. So, please, in your continued prayers for Chelsea, stick one in there for me once in a while, too, that I may be always patient, loving, kind and helpful–more like Jesus–even when I feel like everything is falling apart all around me. I have no right to complain. Chelsea has been the one who has been in the hospital, alone, for all these months, getting MRSA, C-diff, possibly VRE¬†(or whatever it is they said she may have had last time). Because she’s my child, it hurts me to see Chelsea going through all this–and, like the home health nurse, I do not feel qualified to deal with it–but I certainly don’t want to add my bad attitude to her problems. Somebody has to deal with it, right? I’m not a nurse, but I am her mom. I’m the one she’s stuck with, bless her heart, and I need to do a better job. Lord, help us all.