Is this what burnout feels like?

I've been a nurse for ten years. And for ten years I've heard seasoned nurses talk about "burnout". They say it's horrible. You hate your job. You no longer have compassion for your patients. You'd do anything to get away from nursing. I know some nurses who have burnout. They are miserable.

Well, here lately I hate going to work. I don't hate my job per se, just the politics of it. I also hate some of the attitudes I work with. Now I'm not naive enough to think that I can please everyone all the time. But I'd just be happy with making someone happy every once in a while. I work in a department that seems to be the red-headed step child of the hospital. Which means we are damned if we do and damned if we don't.

I still love delivering babies. I still have compassion for my patients (the ones who are really sick, anyway). I just think I'm starting to hate the place I work for. But then I'm told that it's no different anywhere else. I would like to find a place where no one takes advantage of anyone else. A place where no one judges anyone or talks trash about anyone. No back biting. No pissing contests. No jealousy, trying to one-up anyone, or just plain being rude. A place where everyone gets along and we all work toward one goal...the well being of our patients. It's hard to work toward that goal when there's so much high school bull shit going on! I graduated in 1999. Little did I know that high school never really ends.

Two New Teeth! {Y3W}

Somebody stop this train! My baby girl sprouted another tooth this week. This makes two in two weeks. I think I'm gonna be sick. I cried my eyes out when she got her first two teeth. It's the first sign of her growing up. Now she has two more. It seems as if she grows up over night. I go to work...Come home...She's heavier. She goes to Grandma's...Comes home...She's longer. I blink...Two more teeth. Ugh. It's so cliche. Everyone always says "oh they grow up so fast". Well, they do. When she was a tiny baby I wanted her to hurry and get bigger so we would know the extent of her disability. Now I desperately wish I had those months back. I think I shielded myself from bonding with her because of her disorder. At first all I could see was a handicapped child. A child that God had only loaned me and would call home before I was ready. Now that I know more about NKH I want to get that time back to bond like we should have. I love her more than life and I feel like I'm now starting to see past NKH and see the beautiful child that she is. The last few months have been much easier. I don't dwell on "that day" anymore. The day that she will leave me. In fact, I hardly think about it. Sometimes it creeps into my head. I just tell myself that I'm going to die long before her. She is going to live a happy life, no matter how long. That's what it's all about, isn't it? A life loving God and each other. A happy life. That's the life she will have. I promised God and her that I would do my best to be the best mother I could be and give her the best life possible and that's exactly what I'm going to do. Now...to find a way to keep her little...

Eight Months Old {Y3W}

Eight months ago today I was given the most wonderful blessing of my life. My beautiful princess. All 6lbs 1oz of her! It's so amazing to think that the last eight months have gone by so quickly. It seems like only yesterday that we were coming home from the hospital. She has made so much progress, most of it being in the last two months or so. She is finally starting to become more social and she finally shows real interest in her toys. Real interest meaning she plays with them, not just reaches for them. She has favorites and not so favorites. She knows what she likes and what she doesn't like. She's picky for sure.

We had a trip to the eye doctor yesterday. We spent more time parking the car than in the office. The doctor says that Reagan's vision is definitely better with her glasses, but seems unchanged over all. She is starting to have some slight drifting of one eye. We'll be keeping an eye on it and if it gets any worse we may have to do some patching. But Reagan's eyes are structurally healthy! Very, very good news.

So happy eight months, Punkin! It's been a wonderful, wild, joyful ride. I can't wait to see where you are in the next eight months. I love you!

Results Are In {Y3W}

Your Three Words is a blog hop started by Jenni from the blog in which you describe you week in only three words. So here are my three words for this week.

Results Are In

Reagan's EEG results were handed to us on paper yesterday. Occasional sharp wave activity with face reversal activity. Baseline brain wave activity was normal for a healthy 7 month old. So what this means is that Reagan is at an increased risk for seizures because of this sharp activity. We knew this. So essentially, this is not something to be worried about, but it is something to be aware of. She remains on Keppra, which seems to be working. So we will continue to follow the current plan and, barring any complications, we will have a follow up EEG in one year.

On a funnier note...Reagan bit the neurologist! Not hard. The doctor made the mistake of getting her hand within reach of Reagan's mouth and, since she's teething and biting anything she can get ahold of, Reagan just leaned right over and bit her! I had to try really hard not to laugh. Good job, girlie! I can't stand that doctor! LOL

Bad Dreams

I was sleeping so soundly when I was interrupted by a nightmare. One of those nightmares that feel so real that you wake up in a cold sweat and wonder if it really happened. I dreamed that I was having dental surgery and the dentist had ordered some pre-op blood work, during which it was discovered that I had Leukemia. I was sent straight to the hospital to begin treatments. I called Tim in hysterics because I had no idea how to process what I had just been told. I remember crying as the nurse inserted my IV. Not because it hurt, but because I wondered what was going to happen to my family. What would happen to Reagan and Tim if I didn't make it? How would we live if I couldn't work? We can't survive on Tim's job alone, nor mine. We would lose everything. How would we feed our child?

Then Tim brought Reagan to the hospital to see me and I didn't even have the energy to hold her. She sat crying at my bedside and reaching for me and I could do nothing about it. Tim kept telling her that I was very sick, but that it would be ok and she just cried and cried. I felt emotionally and physically drained. It was almost as if I could really feel how bad that situation would be.

Then I jolted awake to the sweetest thing. Reagan had snuggled close to me and had both arms wrapped tightly around my arm. It was if she was saying "you are mine and I'm never letting you go."

On another note, Reagan has to go to the neurologist today (weather permitting). We were told two weeks ago that her EEG had some "slight abnormalities" but none of her medicines were changed. So how abnormal could it really be? I'm just afraid we will get there and have a huge bomb dropped on us. I try to remind myself that her neurologist is very pessimistic and it could be nothing. But the nurse in me says "well it could be this, and this, and this, and what about if it is this?" My mind has a tendency to drive me crazy in times like this. These are the times that I wish I had no medical knowledge at all. Sometimes it would be easier to not know all the things that could go wrong. Sometimes I wish I could just listen to the doctors and trust them. But I can't. I almost never let them do the things they want to. Lumbar puncture? I don't think so, my friend. Six hour EEG? Not today. More and more blood work? Not necessary.

I think they get aggravated at me at times. But I refuse to let them poke and prod on my child if it's not necessary. She is thriving and doing well. We'll monitor the needed blood work every two months like clock work and if something strange pops up then we'll check that out, too. But my child is not a pin cushion. Nor will she be treated like a specimen. She is a child. A beautiful, sweet child. She has a disease that is a part of her. That disease does not make her.

Cold

It's cold outside. Painfully, blistering cold. The kind of cold that makes your muscles hurt and makes you afraid to draw breath. I look at my sweet baby sleeping so soundly warm in her bed. I'm thankful beyond words that I have a warm home for my child. I think about the so many people who have no where to go. No where to turn. I always think of the homeless on cold days. I worry about how people are going to stay warm. My heart hurts when I think that it could easily be me and my family. No one is immue to being homeless. Sure, things are stable right now. But we have no idea what the future holds. I only pray that the Lord continues to bless us as He has so far.

Reagan looks so peaceful when she sleeps. Pink cheeks. Tummy rising and falling slowly with each breath. Roger (her bunny) tucked securely under one arm. I love her so very much. I had no idea my heart could hold so much love for one person. I always knew she would change my life, but I had no idea how much. I think of her every waking moment. I wake up several times a night to check if she's okay. Every decision I make has her at the brim of it. She is what drives me. She is my world.

How it all began.

It occurred to me that some of the people visiting this blog may not know about the disease that affects Reagan or how we got to this point. So let's start at the beginning.

Reagan was born on May 21, 2010 after a completely normal pregnancy. By all appearances she seemed totally healthy and after two uneventful days in the hospital we were discharged home to begin our family life. Tim and I noticed that Reagan seemed very sleepy. She would wake up if you stimulated her, but if you left her alone she fell right back to sleep. As the hours passed she got more and more sleepy and after about 12 hours at home she stopped eating. We took her back to the hospital where she continued to slowly deteriorate. She ultimately ended up being intubated because she was barely breathing on her own. The call was made and Reagan was transferred to University of Tennessee NICU for further treatment.

Once we arrived at UT, doctors were baffled. All of Reagan's blood work, x-rays, cranial ultrasounds, CTs, MRIs...everything was normal. They could find nothing wrong with her. We were fortunate enough to run into a doctor who had seen this type of behavior before. Once. One time in almost thirty years of medicine. He ordered a blood and spinal fluid glycine level and found our diagnosis. Nonketotichyperglycinemia.

NKH is a metabolic disorder in which the body lacks the enzyme needed to break down the amino acid glycine. Once the glycine builds up in the system, it is neurotoxic. This would explain why everything was normal at first and then Reagan slowly went down hill.

Treatment was started right away and within a few hours Reagan started to improve. By the end of the week, she was breathing on her own again and by the end of the following week we were able to take her home. We had no idea what kind of life we were bringing her home to since NKH is considered terminal. We had no idea how long to expect to have her. All we knew was that we loved her and we wanted to cherish each moment we had.

Reagan was fed primarily via nasogastric tube for the first month of her life. Then she decided to start eating again. She now eats very well and is 75th percentile for weight and height.

Reagan has low upper body tone and is seen by physical and occupational therapy twice a week. She is showing signs of developmental delays, but she continues to make progress. She is on several medicines that break down the glycine for her body and also anti-seizure medications since seizures are classic with NKH.

There is a very broad spectrum of severity with NKH and we are blessed enough to be dealing with the mildest form of NKH documented. The leading expert in the country, Dr. VanHove, told us that Reagan will be able to walk, talk, eat, and learn. He told us to expect delays, but she will thrive and do well. Prayers answered.

My ultimate dream would be to eradicate NKH. I don't think that is possible, so I hope and pray that people become more aware of NKH. Tim and I had no idea we carried the genes for this disease. I would love to see more prenatal testing for NKH genes so parents can have an opportunity to be prepared. Some doctors have never even heard of NKH. This is unacceptable to me. With prayers and the help of the wonderful group NKH Crusaders, I dream of a day NKH is included in routine prenatal testing. It comes like a thief in the night and changes your life drastically. I wish we could have been prepared.

http://www.nkh-network.org/
http://www.nkhcrusaders.com/

Simple Blessings

Today a sweet little baby across the country is having a life changing day. Scarlett (her parents call her butterfly) is having a massive brain tumor removed today. When I read Scarlett's story, I'm overwhelmed with the thoughts of everything I'm thankful for. I'm thankful that we have a God who loves us. I'm thankful that my daughter is alive and doing well. I sometimes think our situation is simply horrible. Then I remember that there are others out there who have it much worse.

Scarlett's parents turned her over today for a 16 hour surgery. My heart aches for them. I can't imagine having to hand my child to a surgeon for the next 16 hours. To hand my child over for brain surgery. God bless them. Be with them, Lord. They need you so much.

So for today I will count my simple blessings and pray for such blessings for another family. For today I will savor the moments I have with my child. For today I wear red. In support of Scarlett.

Attack of the green-eyed monster.

I'm standing at a patient's bedside while the nurse practitioner prepares to do an ultrasound. She's about 7 weeks pregnant and excitedly awaiting the image to come on the monitor. I know her. I'm excited for her. Maybe this one will be her little boy. Her girls would love a brother. I'm excited for her...right?

Suddenly there is a faint flutter on the monitor. Is that a heartbeat? It sure is!

Wait a minute...What's that lump in the pit of my stomach? Is that...Oh my gosh...I'm jealous!!! Or maybe a little angry. It's sure not a feeling I would have expected. I'm a little jealous (perhaps angry) that she's pregnant and excited. Or rather that she's able to be excited about a pregnancy. I don't have that luxury. I'll never again be able to get pregnant and be excited about it. My future pregnancies (if there are any) will have to be meticulously planned ahead of time. With Reagan's condition being genetic, there is a 25% chance it will happen again with each pregnancy. God wouldn't do that to us again, right? Don't be so sure. I know of families who have more than one child with NKH. I hate to say that we couldn't handle that. I'm afraid God would do it to us just to prove that we can handle it. He promised He'd never put more on us than we can handle. I just wish He didn't trust me so much.

25% chance. Every time. But that still means there's a 75% chance that the child wouldn't have NKH. I have to keep thinking of that. I wish I could go back to the days of being able to be happy and excited about a pregnancy. I wish I could be care free and just "see what happens". Some of us don't have that luxury.