Seizure Rash

Emily's 14th birthday was marked by a morning seizure with a large rash. This has been happening for the last six months. She has a rash during the seizure, not before, not after. This was the largest rash to date. It not only covered her neck but all the way down her torso.

Lamictal is said to cause rashes but I don't think that is the culprit since she isn't rashing at any other time. It seems to be seizure triggered. I scoured the internet and can't find anyone who has this same problem.

At first I thought she was allergic to the Valium given for the seizure. However, we stopped the Valium and gave Chloral Hydrate for the seizure and it still happened. Now it happens with almost every seizure before the rescue medication is given. As soon as the seizure starts, she rashes up, and it doesn't go away till the seizure is done.

If anyone out there has symptoms like this I'd love to talk with you about it.

Happy Birthday Emily!

Emily is 14 today. About a week ago Emily "told" Jered and Dad that she wanted a cat. Today she got her wish. She really likes him.

About In-Home Nursing Care

I received a few questions about nursing care so today I will blog about nursing care in my home.

The first time Emily qualified for nursing care she only qualified for about 64 hours each month. This was about 12 years ago. Nurses usually like to work 32 or more hours each week. We went through about three or four nurses before we found a couple of different nurses who wanted to work part-time.

At first it was weird having a new person in my house and taking over the care of my child. I knew exactly how I wanted things to be and I was afraid that the nurse would not give the care that I would give. Boy was I wrong! All I had to do was show them what to do. After a few days of shadowing them I felt comfortable enough to leave the house for a short time.

It was different having a new person in the house, and I used to clean my house before the nurse would arrive! HA! I think about that today and have to laugh.....

We used a nurse part-time for a few years and then had to go without because we couldn't find a nurse who would work so few hours. And of course once our state case worker found out we weren't using the hours (didn't matter than we were having trouble finding a nurse) we got cut off. She promised that we could be reinstated as soon as we found a nurse.

So, my advice here would be, if you have nursing hours, USE them!

Once nursing care was reinstated (after a very difficult fight) Emily received nursing care up to 7 days a week. She had been very ill and was on her second pneumonia in as many months. She was very difficult to care for and I was at the end of my energy reserve. So again we had to meet new nurses.

When a new nurse comes to meet us I go over Emily's medical issues as well as her medications and procedures. I make sure the nurse is comfortable with the care and if she seems to be then we do a trial for a few days. I shadow the nurse for one or two days and I expect the nurse to be able to really care for her by the end of the week. Most nurses coming in can do just that. I am the nursing supervisor so it's my job to make sure the nurse can do the job. I do trust that the agency who sent the nurse already checked to see that the nurse is qualified.

We've had a few minor issues with nurses. One nurse couldn't figure out Emily's feeding pump and after talking to me about it on the phone she still couldn't do it. I told her to ask my son to help her, he knows how to work the pump. Well, she didn't ask him and when I returned home after 10 hours Emily had gotten 1 hr worth of her formula instead of 10 hours worth of formula! I asked for another nurse to be sent out.

When you have a nurse in your home the nurse stays with the child. Emily likes to stay in her room so the nurse is in her room with her. We expect the nurse to keep Emily's area clean. That means if the nurse eats in her room the nurse cleans it up. Any mess that happens because of Emily, such as medical supply wrappers, etc, the nurse will also clean up. We also ask our nurse to fold Emily's laundry and put it away, if I haven't done it. If Emily has been very ill and the nurse has been on her feet all day I don't expect the laundry done. But if there isn't much to do because Emily has had a seizure and she has been sleeping for the last 3 hours, I expect the nurse to do other chores that have to do with Emily's care.

The nurse puts supplies away, keeps track of medications that need to be ordered, cleans the medical equipment, and makes sure that Emily has clean sheets on her bed. She will usually change the sheets when Emily is in her chair watching TV.

When Emily goes to school the nurse goes with her. Emily has a number of medical procedures, aside from needing medications and seizure management, so a nurse needs to be with her at all times. Emily's nurse goes to medical appointments and therapy sessions with us. If we go to Walmart, and Emily is going to go, the nurse goes with us. We also take the nurse to dinner with us if Emily is going to go. We don't expect the nurse to buy her own dinner, we buy it if we are all going.

We do not take our nurse when we go camping in the trailer, when we go on vacation, or when we go visit grandma. We can ask the nurse to go if we want her to, but I never have.

Some places that require a ticket, or entrance fee will not charge the person who is pushing Emily's wheel chair. This happens when we go to the state fair. We have to pay to get in, but the attendant pushing Emily's chair does not.

If our nurse is here at dinner time I like to offer her dinner. However, you don't have to feed your nurse! I just like to. Most nurses will bring lunch. I allow them to use our refrigerator and microwave. The nurses don't usually use any of our dishes. Of the times they do they usually wash them out also. We keep dish soap at the sink and available for anyone to wash their own dishes.

One last thing, our nurse is in our home to take care of Emily, not Grace. We do not ask for nor expect any of the nurses to watch our other child. That is not their job. And while the nurse is working for us, she is really only working for Emily.

There's probably more to tell about nursing care so ask questions if you have them. My advice is to go with your gut feeling. Is the nurse working out? If not, talk to the agency about it. You can always get another nurse, you can't always fix a mistake that might be made because a nurse didn't understand how to do the care. You are the supervisor, it's up to you to make sure that the nursing care is what it should be.

A Look at the Week

Its Monday. Out my window I see melting snow, and sun! I wanted snow and here it is. However, I also like the sun, especially when it hasn't been seen in a while. Weather report says it will snow again tomorrow. I don't mind, it's winter. Here here for snow!

Emily doesn't have a nurse today (nor for the last 3 days). I'm hoping the agency will find someone soon who wants to work with her. I look around my house and there are so many chores that need attending. To my shock and horror I realized I had 3 baskets of clean laundry that needed folding, and my sweet husby tried to change the clothing from the washer to dryer and it was full also. Well, Grace is at school and I'm thankful for that blessing.

One of my goals for this week is to work on my Legislation homework. I'm trying to figure out how best to approach my representatives at the Capitol about our lack of nursing care. While there are nurses out there looking for jobs, most of them can't afford to work for the low rate of pay that Medicaid pays for Emily's nursing care. From what I understand, Medicaid only pays about 50% of what a private insurance will pay. That's the simple reason we can't find a nurse to help us.

I have two magazine articles to write this week. One will be fairly easy and the other I need to do some research on. I enjoy writing so this won't seem like a chore.

Emily's birthday is this week. She'll be 14! I can hardly believe it. She was such a fragile little girl that I really didn't think she would live to be a teen. And today she is quite the teen. She gets mad at me, frowns when she doesn't get what she wants, and even gets tearful when she is overly happy. Now that she is older she isn't really interested in toys, but I have no idea what she would like for a birthday gift. When I ask her I don't get any indication of interest at the things I suggest. This is going to be an interesting birthday.......


Our anniversary is also this week. Jeff and I have been married 26 years. We usually go out to one special restaurant for our anniversary. Some years we get each other a gift, or a communal gift. This year I think we are just going to go to dinner..... if we have a nurse.

Things I take for Granted

Today while I'm praying for Annie-Lou to recover from her surgery I think of the things that most parents don't have to watch their child endure, things which I take for granted. For parents who's children aren't routinely hooked up to tubes, wires, sensors and battery powered equipment, it must be frightening to see their child arrayed in the hospital's finest. I think if Emily came out of surgery and didn't have wires, tape, oxygen, drainage tubes and sensors on her, I would think she wasn't long for this world. My, how my perspective has changed.

Each day we use catheters and syringes, a drainage bag, supplimental breathing equipment, feeding tube and pump, and an assortment of splints, supports and medications to help us with Emily's daily living. And when we look at her we see beyond the medical appendages. We see the beautiful child who is our daughter. The girl who is taking long looks at teenage boys, and loves to laugh at funny things like dog farts. We see a baby girl who has grown into a lovely teen, one who's beautiful face continues to shine despite the irritations of her medical conditions.


We've grown with our girl and thank God every day for all the support she has. But there are some days that I wonder, and even wish that I knew what life would be like if she didn't need all the medical extras. I spend a moment and dream a bit, and pray. And then I thank the Lord that someday, in heaven, we'll see her without all that stuff attached. So right now, while Emily's here she needs it, and its a part of her.

Today I'm praying for Annabelle, that she won't need the extras. And please God, ease her stress from surgery and help her to take big beautiful breaths. Cause life to flow in her little body and rejuvenate her. And Lord, I just want to say, I'm a fan of the beautiful work you do. She's such a cutie!

You can read more about Annabelle at her family blog.

Thinking of Surgery

A friend, writing about his daughter's surgery this morning, brought back memories of one of Emily's surgeries. Several days before surgery we had to take Emily to the hospital. There they checked her breathing, medications, allergies, and whether she wore false teeth. She was weighed and measured, temperature taken, and notes written up. Talk about a day long appointment, between the drive to Seattle, and the drive back, it really was all day.

On surgery morning Emily's schedule was only changed a little. Feeding pump was turned off and all medications were put in her medicine bag (This is a bag I always take to the hospital because while they know what medications she needs, they don't usually have medications ready for her until very late in the evening after surgery). I dressed her in new pajammas, combed her long beautiful hair and braided it, and then helped her choose one of her "kids" to go with her (usually Rabbie or Piglet). She was placed in her wheel chair, coat put on, and blanket spread over her legs.

Its always dark outside when we leave for the hospital. I think its a rule, you have to arrive before the sun comes up. We had a long way to drive so we got a very early start. After driving through thin traffic (who drives into Seattle at 4am?) we park our van in a spot specifically for a van with a wheel chair lift. That is one of the perks for getting to the hospital early.

Inside the hospital the lights are dim, maybe to help little ones stay asleep. We are told to wait in the lobby until we have been called. There are several televisions broadcasting the news, and those who arrived before us are either sleeping in their chairs, or sipping yukky machine coffee because the coffee stand across the hall hasn't opened yet.

Once we are called back to the intake area we are given private quarters and asked to dress Emily in the hospital gown. A nurse takes her temperature and blood pressure and then shows us to the children's waiting area. There are toys and a couple of children in there already playing. Emily looks at us as if to say, "Do I HAVE to be in here, again?"

Soon one, then two, then the last child is called to their gurney and taken down the hall to their waiting surgeon. And we wait for Emily's turn. We watch a video that Emily seems to enjoy. I read a book, and then another, and we still wait. Now we've been in this room for an hour, and we're still waiting......

I'm beginning to think that Dr X must have had a very difficult case before us. It sure is taking a long time for them to bring Emily back to surgery. About an hour after they were supposed to come get Emily for surgery I decide to leave our private playroom and go to the intake desk for information. I take the woman by surprise and she wanted to know where we were.

"What do you mean you want to know where we were? We were sitting in the waiting room where you PUT us!" Hummmm. I'm told to go back to the waiting room and a nurse will come get us. No sooner than I walked away and the lady at the desk was talking on the phone.

"I found them," she announces. They've been here waiting in the waiting room...." Her voice trails off. I can't believe it! They LOST us! Who would have thought that we could be signed in, and then put where we were supposed to be, and they forgot about us??? Yes folks, this really happens.

We were ushered back to surgery and met with the doctor. He had no idea we were even in the hospital. He was waiting for us! I just couldn't believe it. I told him we had been there since very-dark:30 and had been waiting on him in the little waiting room that they placed us in.

What a start to the day. But to our happiness the rest of the day went without a hitch. Emily did well through surgery and she was in her room, and medications brought to her on time! Wow, I think that was a first.

So while I reminicse about surgery I have to say I'm so glad that Emily doesn't have any surgeries scheduled for this year. Yippee!

What a Day

After opening my eyes to the cold and dark I checked on Emily. Her hands were cold. They've been on the cold side for weeks now. We warm her hands with mittens and cover them with her blankets.

Once Emily is snuggled to my satisfaction I can drink my cup of coffee and read my Bible. I'm at the section where Joseph has been sold into slavery and taken to Egypt. His older brother Rueben is just beside himself with grief because the brother's sold Joseph. God has a plan though!

I went to check on Emily again and she was sleeping, something unusual for her at 6:30am. I turned on the computer and began to talk with my mom. I love technology! I get to talk to my mother every morning via the internet. She lives two states away from me but with internet it seems like she is right there with me.

At 7am our interim nurse arrives. She is awesome. We only get to have her for a couple of weeks as she has another client that she works for. We talk about Emily's evening, and about her medications. Emily begins to stretch and is starting to wake up. She gets a breathing treatment, and her overnight urine cath is removed. The nurse reports that the catheter wasn't in the stoma all the way and Emily's clothing and blankets are wet.

Time for the bed-bath. I rolled up my sleeves and helped the nurse get the wet clothing off. Emily is freezing now because all the blankets are removed. The wash basin with warm soapy water is close-by and I wash her arms, back, and chest. We quickly towel dry the girl and cover her with clean blankets. Part 2 - wash the rest of the body.

Once Emily is clean and dressed I go to the edge of the stairs and call Grace. She isn't up yet, which is a miracle since she gets up early every morning..... I have to call her a couple of times before I hear groaning and movement from her room.

Jered appears. He has been at work all night and is ready for food and probably a nap. Although I called Grace she isn't downstairs yet. Jered goes to the stairs and calls her. Her medicine is in the kitchen and I'm getting it ready for her when I hear a blood-curdling scream.

Grace is screaming which in turn makes me scream..... "What? What?" I'm yelling. Grace is running down the circular stairs and I'm terribly upset because of the way she is screaming (and the thought that she will fall down those circular stairs). When she reaches me in the kitchen she is shaking. Trying to get the words out of her about why she is crying and screaming was nearly impossible. I'm thinking she must have seen a spider. But I've never heard her scream so wildly for a spider! After a good hug she calms enough to tell me that there was a RAT upstiars and it ran across the floor right in front of her! I'm thinking, "A Rat?" Then she shows me the size, which is noticably smaller than a rat would have been, and she tells me that it was probably a little mouse.

OK, "Jered, we need your cat!" I'm just about laughing by now at the thought of a big rat upstairs, one that is really very tiny once Grace showed me how little she thought it was. Jered is complaining that his cat probably won't know what to do. "Mom, I've spoiled him. He won't know how to catch a mouse." HA! I'm laughing now. "Jered, cats don't unlearn how to go after mice!"

I'm back to Emily's room and checking on her when she starts a seizure. She starts and stops several times and she is startling very easy. Once she starts the seizure in ernest the nurse gives her medication to her to stop the seizure. We wait and wait. She's still seizing.



Its time for Grace to get on the school bus, and I need to feed the horses. So I leave the nurse in charge of Emily and Grace and I head out the door. The horses are calling. Since I got off schedule by screaming and then a seizure the horses have to wait till Grace gets on the bus for their breakfast.

The ground is frozen. Jeff filled the water container last night so I only have to kick the side of the bucket to break the ice on the water. After two or three good kicks (why didn't I use a rock?) my foot hurts and the ice finally breaks apart. The horses get their alfalfa and they are happy.

Once back in the house my glasses fog up. I have to take them off so I can see Emily. She is still seizing. Its been nearly 30 minutes. We opt for another dose of medication. The seizure lasted 40 mintues. This was a long one. Generally the long seizures last 25 minutes, and the longest was 35 minutes. So today she set a record.

When it was all done I called the pediatrician and gave information on this episode. Emily has an appointment on Thursday so we'll see if there is anything else going on.

So the dishes didn't get washed this morning, and I didn't vaccuum yet, but Emily is sleeping peacefully. I hear the clothes dryer is done so its time to get back to housework. But isn't it lunchtime? Maybe housework can wait a few more mintues......

Bucket List

A "Bucket List" is not a new idea, but it is a novel one that many people began to think about when the movie of the same name came out. Aptly named after the phrase "kick the bucket" (to die), this list is an enumeration of things a person would like to do before they die.

I've thought about my bucket list occasionally and so I decided to put some of it into writing.

1. Visit Alaska
2. Ride in a dog sled
3. Take a sleigh ride
4. Take a train trip from Seattle to Fairbanks, and then again from Fairbanks to Anchorage.
5. Try kite skiing
6. Fish for Steelhead
7. Go on a cattle drive
8. Learn to fly a small plane
9. Write a historical novel while vacationing in a log cabin
10. Pan for gold
11. Learn to make an arrowhead
12. Visit all the places my grandparents and great grandparents lived (eastern United States)

An of course there are many other things I'd like to do, but these made the list today.

As a child I had a list of things I wanted to do. Here are some things I've accomplished:

1. Learn to read and write Braille
2. Use a potter's wheel to make a pot from clay
3. Make a "Lost Wax Cast" silver ring
4. Learn to clean, comb, and spin wool
5. Learn to weave
6. Be a mother to many children
7. Help teach and care for children who have special needs
8. Write a book
9. Dye yarn
10. Have my own library
11. Own a horse
12. Own sheep

Re 1: Just before I turned age 12 I heard the story about Helen Keller and her teacher Annie Sullivan. I read and re-read the story, and then read it a few more times. I never knew that there were children with special needs. I had met some people who were deaf, but never a child with any disability. After that book, and that year, my eyes were open. That is when I learned, on my own, how to read and write in Braille. I received a little slate and stylus (pencil and paper for writing braille with) for my birthday. And once I learned to punch out words I was connected with a lady who used Braille for writing. She and I would correspond for many years.

Re 2 & 3: I was always a creative child and took every art and craft class that was available to me. In high school I learned to use a potters wheel, and took a pottery class in summer school one year. I also learned to make a silver ring by the lost wax method when I was in high school. I learned to make stained glass, soldering the pieces together, and made a pair of Mediterranean style hanging lamps in a metal shop class.


Re 4 & 5, 9, 11 & 12: It was not till I became an adult and we purchased our current home that we had room for animals. We started with sheep. I love wool and my parents bought me a spinning wheel many years before. It was a long time, trial and error, before I could spin a decent yarn. I learned to weave after purchasing a large table loom from a thrift store. It looked like an old school loom, one that is for teaching people to weave. When I saw it in the thrift store I went home and told my husband about it. And I thought about that loom for about 48 hours. My husband told me to go get it. I think I paid about $75 for it. That started my love of weaving. I'm now on my second floor loom (I sold the first one to buy the second one), and on my second table loom (I sold the first one to buy the first floor loom).

Mostly I weave shawls but I have made a Tartan for my mother (and I dyed the yarn for the colors!), I made material for a long coat that I then sewed (for those of you who know how much I dislike sewing, this is a very special gift I made for a friend). I've made scarfs, and pillow coverings, baby blankets, and more shawls. And you should see how much yarn I have.... A weaver can never have too much yarn!

And now with a pasture I was able to raise my own sheep for the wool (and meat). My first experience with sheep came with a pair, ram and ewe. The ram was a large Romney. His name was Joker. During rutt season (mating in the fall) he didn't want anyone between him and the ewe. The way our pasture and barn was set up I HAD to go into the pasture to get their feed as the barn was inside the fence. One day he turned to me and ran, butting me good. I landed a few feet from where I had been standing. He tried to butt me again several times, but a swinging club prevented him from carrying out his threats.

I have many more animal stories, the rooster was a special one also...... and we've had a variety of other animals. Today a pair of horses share the pasture. Sweet mares, with nary an ounce of trouble in them. We don't ride them much anymore. Still they are beautiful to look at, keep the grasses in the pasture cut, and love to be around us when we go out to feed them.

Re 6, 7 & 8: I became a mother at age 19. Motherhood instilled responsibility in me. It was something I had always known I would do, so I decided I would become the best mother I could be. Growing up, my sons didn't always think I was the best mom, but now they do. My how views change when you become an adult! When the doors opened to provide foster care for medically fragile children we chose to walk through and not look back.

Foster care is a commitment, and a lifestyle. Our social circle changed, except for those who would stand by us even though we weren't able to do the things they were doing. Those are our forever friends, Bill & Kay, Vicki & Jeff, Rob & Cherie, Mike & Mary, Dave & Suzie. We have other friends also, but those special people kept us in their hearts even though we could not be as socially free due to being foster parents for those very special children.



Writing my book about foster parenting children with special needs was a labor of love. I enjoyed being a foster parent so much I want to see other foster parents make it, as we did, for many years. This is only possible through patience, and the support and experience of others. If I did not have support (Vicki, Jenni, & Cherie) during the stressful times, I don't know if we would have made it for 17 years as foster parents. I have helped, trained, and supported many children and their families. And now with this book written, a desire is fulfilled.


Re 10: One of my most favorite things in this world is books. I have dozens, no, hundreds of books, and I have a library. It took a long time to collect all the books, and even longer to get them on shelves. But the subjects have always been the same. I enjoy history, especially US history. I also enjoy crafts of all sorts, so I have many craft books. Several of my book cases are devoted to Biblical and Religious studies, and includes all the important reference works. And then there are the novels, nearly all are historical in nature. Sometimes I purchase non-fiction works, especially if I need to learn about something. I homeschooled one of my boys from age 10 through his 18th year. I have many books for learning things. I also have music books. One cannot have too many music books! And picture books... especially those about national parks, and nature in other countries. Books are such a great item to have around. They don't use up any electricity and you can have so many adventures between paper pages. So if you are ever visiting, and you need a good book, I bet I have one you would like.

Imagine

Imagine - The word says it all, and this picture is worth 1000 words.



We start the week with another new nurse. This one will only be with us for a couple of weeks until her other case comes home from the hospital. We're still looking for a full-time/part-time nurse. It is much more difficult than I originally thought to find a nurse that fits. The nurses that apply for a job often times change their mind, or want to work for a higher wage. Emily is on Medicaid which only pays a minimal amount for nursing care. So even though she qualifies for daily nursing care, there are not very nurses out there who want to work for close to nothing. You really have to have a heart for children like Emily.


I'm missing the snow already. I don't really want to drive in it, but it sure is beautiful. I feel so much more creative when it snows. Here are some of the snow pictures that I took a couple of weeks ago.

The Kilt

We have Scottish blood in our veins (Hossack, MacKenzie & Ross) and I figured I would get to making a kilt sooner or later. My mother came to visit and she helped me sew a kilt promised to my oldest son. I made the version with less expensive material, just in case we made irreparable mistakes.

This is a view of the back. I can't wait to see Adam in it, dressed up with socks and all! More photos will be posted.