I'm Nervous

UPDATE:

We met with Tessie last night and she was very nice. She’s originally from the Philippines and has been in American for about 5 years. I think she’s used to being in a situation where she comes in and has to tell the family what to do, so in that regard, we were different than what she had previously dealt with. She kept trying to tell us things about EB because she had seen 1 person several years ago. We tried to make it very clear that we don’t want someone to come in and take over with a whole new regime. We want someone to assist me for the time being, then gradually phase into doing Ella’s bandages alone. She did comment that Ella’s bandages were done really well, which made me feel good, however, she really understood the situation when I took her upstairs to show her our bandage changing area and specifically our supply closet. I opened the door and she gasped then said, “Oh my! It’s like a pharmacy!” I went through each product we use and explained to her what it is, how it’s used and why we use it. I even took out the roll gauze and explained to her that we only use one specific brand of gauze because it’s much softer than any other brand. She wanted to feel everything and I gave her samples to take home. We didn’t do a bandage change last night. Instead we went over everything and filled out all of her paperwork. She is coming over on Thursday to help with the bandage change from beginning to end.

While she was very nice, I’m cautiously optimistic. She was good with Ella and approached her with caution. We’ll see how things go the first couple of bandage changes and then reevaluate.

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Today we have a nurse coming. The goal is to train her to do Ella’s bandages so that a couple of days a week I can have a break and so that if Joe and I ever want to go out of town together for longer than 1 night then there will be someone else who can clean Ella up. We also think it’s good practice to have someone else who knows how to wrap her in case something were to happen to Joe and me.

Since Ella came home from the hospital I have been her primary caretaker. Joe has done the bandages a few times, and several people have helped me do them, but for the most part I take care of Ella’s boo boos. I’m not a nurse and I don’t have any medical training other than what I’ve learned “on the job” as Ella’s mom…but I know one thing that no nurse will ever know…I know Ella and I know her little body. I know every boo boo, every tender spot, every space of extra fragile skin, every scar. I know exactly how to hold her hands to get the best wrap around her arm. I know exactly how to prop her foot on my tummy so that I get the best wrap around her leg. I know where to add extra gauze and where to lighten up. I even know exactly which direction to roll the gauze to get the smoothest and most even wrap without wrinkles and bunching. I just know Ella and I know how to deal with her when she’s completely naked and at her most vulnerable point. (If you talk to any EB parent, most of them will be able to say the exact same thing.)

When Ella first came home from the hospital I would lay in bed at night going over her body in my mind. I would think about each boo boo and ponder how we could better address that area. Sometimes I would think about it for hours and even draw diagrams displaying how to cut the stuff to perfectly cover the wound. Now I feel like we pretty much have things down to a rhythm, but sometimes I still spend hours thinking about how best to address a problem area. Just last night I came home with a diagram on how to cut things for an area we’re trying to address. My goal in wrapping her body is to address problem areas while reducing the occurrence of more boo boos.

On one hand I like being the primary care taker. I know that Ella’s bandages will get done the way that works best for her. On the other hand, sometimes I need a break. Sometimes, after a long day at work, or when I am sick (like right now…I have a terrible cold) I just don’t want to do the bandages. And Joe usually doesn’t get home from school until 9:30 or later and by then we’re all tired and doing the bandages is not a pleasant experience.

We decided several weeks ago that we were going to bring someone else in to train to do Ella’s bandages. This person will only come in 2 days a week, but will be able to either do them completely on their own, or help me do them right when I get home from work so that we don’t have to wait until 10pm. Joe did all the leg work and found a company that our insurance will accept, and even called the company to schedule the nurse. So tonight at 7 pm the nurse is coming in.

We’ve had dozens of conversations on what type of nurse to get. Sometimes we think it would be better to have an older, more experienced nurse who has been in the field for awhile. Other times we think it would be better to have a young new nurse who doesn’t come in with the attitude that she knows all the answers to Ella’s wound care needs. The nursing company has a nurse who has worked in wound care for years and she is going to come help tonight. Honestly, I wish I was more excited. We talked to her on the phone last night and the positive side is that she has heard of EB and has even worked with EB patients before. The negative side is that within minutes she was telling us over the phone what kind of things we should be using on Ella. I don’t want a nurse to change things…I want a nurse to come in and do things the way we’re doing them. If she has suggestions that’s great and I’ll listen to them, but I don’t have time to deal with someone who thinks they can do things better than we’ve been doing them for 2 years.

We’ll see how it goes tonight and if it doesn’t go well we’ll move on to the next nurse. Please keep us in your prayers tonight at 7:00 pm. I’m nervous. Nervous to train someone else. Nervous to potentially leave Ella’s care in someone else’s hands. Nervous that Ella will get more boo boos than is necessary. Nervous that this nurse isn’t going to listen and I’m going to have to show her who the mom is. I’m just nervous about it all.