The Fight for My Right

On Monday, December 18th I woke up in severe pain. My legs hurt so much they felt almost numb. My back felt as if it was being used as a punching bag. My chest could barely take in air and my arms felt like someone was stabbing me every time I tried to move them.

Terror struck me as the realization of what was happening started to sink in. It was something that I had not experienced in years. I was having what many doctors refer to as a Sudden Acute Sickle Cell Crisis. There are no warning signs and no build up to the pain. On a pain scale your body goes from 0 to 100 within seconds.

I thanked God that I remembered to keep my cell phone in bed next to my pillow. I used what strength I had to call my friend Becky. I asked her to come over and take me to Madigan Hospital. Somehow, and to this day I still don't know how, but I managed to get myself downstairs. But once I got on the couch I just could not be moved. The pain blurred much of my thinking and I fought to keep some control of what was going on around me. Becky called 911 and the paramedics came in what seemed like less then 30 seconds.

I was soon lifted up onto a stretcher and taken to Navy hospital which was closer. On the way there the paramedics gave me some Demeral but forgot to give me something for nausea. I threw up everywhere. At Naval Hospital I was admitted to the Labor and Delivery where they cleaned me up and got me stable enough to make the journey in another ambulance to Madigan. Becky followed the ambulance in her car.

At Madigan I was taken straight into a private room and my blood was drawn. More medication was given followed by more hurling before someone realized I needed anti-nausea medication. My blood test, along with a urine sample taken showed extremely high protein levels in my kidneys and abnormal function of my liver. One of the doctors was sure I had preeclampsia and told me that I will need to deliver this baby in the next day or sooner.

"Hell no! My husband flies home on Saturday night. You can wait until then."

"Well, we'll just see about that".

"No, there is no, 'we'll see'. You are not going to deliver this baby until my husband gets here."

Now I'm usually not rude to doctors, but I knew what my body was going through and it had nothing to do with preeclampsia.

"They are not going to take this baby out of me". I kept telling Becky. "I refuse to let them".

Throughout the night the nurses did their best to help ease my pain, but all the while my anger grew as the doctors around me talked about me and made decisions for me as if I was deaf and mute.

Becky stayed the night with me.

The next day I was told again that I would most likely be induced very soon and that they had already planned on keeping me in the hospital until after Christmas. I got angry and I cried. Who were they to tell me I had to stay in this hospital until after Christmas. They have no idea when my crisis would be over. They can't even know that I am no longer in pain until I tell them. And how dare they say they will induce me when they truly don't know what is wrong with me? Besides, they can't induce me while I'm still in the middle of a Sickle Cell Crisis.

I was moved to a smaller room. Becky tried to cheer me up, but I was already reaching a boiling point. Every time I tried to question the doctors they looked at me as if I was offending them.

During the next two days I went through emotional hell dealing with the doctors not listening to my concerns and my needs.

My other friend, Elsa, came to keep me company. She got to see me get two blood transfusions. Becky saw me get my first ever automatic drug pump that allowed me to push a button and self-medicate myself.

My lab work was sent to a kidney specialist. He personally came to see me.

"Michelle, there is just no way you have preeclampsia. Your high protein levels can simply be a result of your current crisis or from your body just dealing with having a disease and being pregnant. But truly, we may never know. There are just so many other things that it could be."

Finally, a voice of reason. I started to feel that there may be some kindness in this hospital.

The doctor from the first night visited my room later that day with an obvious look of disappointment on his face.

"Well, the kidney specialist doesn't believe you have preeclampsia."

Well, duh!!!!! I thought to myself.

"However, I'm still concerned about your high levels of proteins, so we may be keeping you for another 72 hours to collect your urine."

"Uhm, no you're not. I can pee at home. I've seen people do it. They pee in one of thoses pastic containers and just bring it back into the hospital."

"Well, I'll check and see what the specialist says about it. By the way, someone will be by from the NICU to discuss your birth plan."

Someone from NICU will be by? For what reason? Even though I asked theses questions, no one would give me an answer. I was to wait until someone from NICU came and explain it to me.

The upside to all this drama was the fact that I was getting fed well. The food was really good. I had bacon, hashbrowns and hot tea for breakfast. For lunch I would have chicken Cesar salad and fruit punch. Dinner would be steak and mashed potatoes with soda and ice cream and cookies for dessert. I tried everything on the menu like it was a buffet at a casino. The doctors may think me and this baby were a lot of things, but hungry we were not!

The nurse came in to inform me that my blood work all came back looking good and that I would be going home today. And yes, I could do the pee test at home. By this point I had not had any medication in me since the night before. Two IV's dangled from my arms with no real use anymore. However, I still couldn't leave until I spoke to the NICU person. I didn't have to wait long for him to come by.

"Hi Michelle. I'm from the NICU. I was asked to talk to you about some complications your daughter may experience after birth."

"What complications?"

"Well, your daughter is being admitted to NICU after she is born because you have been taking Percoset. With such a medication, your daughter may experience a drug withdrawal after she is born. We will need to monitor her and if she shows any signs of withdrawal we will need to help slowly wean her off the drug."

"Wait a minute. I asked the doctors long ago if that drug would have any affect on the baby and they said no. You mean to tell me that I've been drugging my own child? Well then the best solution is to stop taking that drug."

"Oh no Michelle. You have Sickle Cell. We want you to keep taking the drug."

"What!!!!! Are you insane?! Why would I keep taking a medication to drug my daughter and send her to the NICU when I can just stop taking it now and avoid the NICU altogether?"

"Well, it really doesn't matter. She still has to go to the NICU?"

"Why? And for how long?"

"We will need to keep her for at least a week just to monitor her."

"But if I'm not taking the drug and she shows no signs why does she have to stay a week?"

"She just does. We want to make sure she is well taken care of. "

"But there is nothing wrong with her!"

"Don't worry Mrs. Mattingly. You and your husband are free to come and see her in the NICU. You can even hold her and decorate the crib if you like. We just need to watch her. So come by any time day or night and you'll see she will be in good hands. Besides, we'll only have her for a week, but then you get to have her for the rest of your life."

Yes, the thought of punching this guy in the face did occur to me at this moment. But then I realized that he just wasn't worth spending Christmas in jail for.

"But you are asking my husband and I to drive two hours one way every day to see our baby when there is no reason to keep her. What about breastfeeding? How am I suppose to breastfeed her?"

"Mmm. We'll just have to see about breastfeeding. I'm not sure. You'll need to discuss...."

"No! There is no discussing. I'm breastfeeding my child. And when I get home I'm throwing away every Percoset I have in the house!"

"Mrs. Mattingly don't do that. You need those pills to help manage your pain."

"I know what it's like to be in pain with no medication. Don't worry, I'll manage!"

Tears were flowing down my eyes again. I was so mad I could barely talk anymore. The nurse came in just as the NICU doctor left. She removed my IV's and explained how I was to do my pee collection. To add insult to injury they wanted me to perform my pee collection on Christmas day.

"You know Michelle, if I was you", the nurse said, "I would do the collection on Saturday. As long as you keep it chilled, they won't know the difference."

My nurse sat down beside my bed to go over my discharge papers.

"Don't I just need to sign the paper and I can go?"

"Well, there are some things they want me to go over with you. They want you back on January 2nd."

"Oh, for an OB appointment?"

"No. They want to do another amnio on you."

"WHY!"

"They want to check and see if the baby's lungs are mature. If they are, then they want to go ahead and induce you and deliver the baby that day."

My whole body went numb. I couldn't believe what I was hearing. These arrogant pricks had decided, without my permission, that they were going to stab me in the stomach with a needle again and then take my baby out of me.

I signed the papers. The nurse left. As I was getting ready to leave the doctors came in.

"Well, Mrs. Mattingly, you are looking better."

"Why do you want to do another amnio?"

"You are having a Sickle Cell crisis once a month and we just don't want to take that risk of you having another one. Don't worry. An amnio is very safe at this stage. If you go into labor during the amnio we can easily and quickly remove the baby."

"You mean doing a c-section. But why? I don't understand. All this time you have been worried about her being born early and now you want to rip her out of me?"

"Our concern is for the health of the baby. You should understand that."

"I do. But you're making me feel like I have no choice in the matter."

"Well, you don't have a choice. We need to do what has to be done to deliver this baby safely and healthy. I don't understand why you are stressing over all of this. Dopn't you want your baby to be born healthy? Besides, you won't care about any of this once you get that baby home. In the end it never matters how the baby is delivered. All that matters is that it is healthy. Just be happy you get to go home for Christmas."

"If my husband was here he would kill you." I whispered under my breath.

Becky helped me pack my things and took me home.

I didn't talk to anyone about what happened. I wanted to talk to Ray first. The following night I would get my chance.

Ray called me late in the evening from Hawaii. I told him everything that happened. I knew Ray would be upset, but I was even shocked at how angry he was on the phone.

"Those doctors are not coming near you! They can't make you have that baby. Elektra will be born on her schedule, not theirs! You will not be going in on January 2nd. And our girl will not be staying in NICU. When is our next OB appointment?"

"December 26th."

"Just wait until I get back there. They just messed with the wrong couple. Don't worry, I'll handle everything when I get there. They don't know what they just got themselves into. I'm going to give that doctor a mouth-full at our next appointment. Don't worry. I'll see you tomorrow honey. Love you. Bye."

To be continued......

The Blackout

On December 15 sometime around 2 am the power went out in Jackson Park. In fact, due to a horrible wind storm that swept through the state, half of Washington was now out of power.

Almost everyone in our neighborhood was late getting to work. Around 9 am when the sun finally came up you could see husbands frantically trying to open their garage doors by hand and hurrying to work. Lucky for us Ray usually sets his cell phone alarm, so he was able to make it to work on time.

I found candles and matches and started preparing for a long day without power. When Ray came home from work we used the gas stove to keep the house heated.

Ray's sub left for Hawaii that weekend and I was left alone with no electricity. Growing up, my mother, brother and I survived two Chicago winters without any electricity, so I didn't feel the least bit scared about going a few days without power in Washington.

After about the second day of no power many families moved out of their homes and stayed at hotels or the homes of friends and family. Many people were doing this across the state. In a short time there was not a single hotel with room available. Even though many people had no choice but to leave their homes to find warmer places to stay the unfortunately this left many homes completely open to thief.

Returning from work one afternoon I was approached by one of the maintenance people. He informed me that several homes in the area had experienced flooding due to the pipes freezing and bursting. He asked me to keep at least one faucet running at all times until the power came back on. With very few people at home the maintenance team was working around the clock turning on water hoses in front of the houses that were empty. For those that were home they were coming in and changing the back-up batteries in all the smoke detectors.

The cats and I stayed warm in the bedroom watching Harry Potter on Ray's portable DVD player and drinking hot chocolate. Yes, I had places I could stay if things got too cold. But really, I wasn't bothered by it. Thanks to a gas powered water heater I could take all the hot bathes and showers that I wanted. I did eat out a lot in order to preserve the food in the fridge.

Our area was lucky. By the following Tuesday night power was back on. But many families in Washington would not have any power until after Christmas. Unfortunately, I wouldn't be home to see the power come on. But that's another story.

The Madigan Visit

On Tuesday morning, November 14th I started having chest pain bad enough to feel the need to make a 45 minute trip to madigan Army Medical Center.

Ray drove us to the hospital and I got checked in at the ER. We waited no more then 10 minutes before I was brought back to a room to be examed. (Anyone who has ever spent time in a regular hospital ER understands that waiting less then 5 hours to be seen by a doctor is nothing short of a miracle).

Ray helped me put on one of those always fashionable hospital gowns and assisted me on to the hospital bed. Just as I was getting comfortable, Doctor #1 came in to talk to me. After giving him my life story he left the room. Nurse # 1 came in to make sure I was warm enough. I also gave her my life story and a urine sample. Nurse #2 came in shortly after, again asking for my life story.

Now, let me take a minute to stop and clarify for you. When I say they wanted my life story what I mean is that they want to hear everything about my Sickle Cell Disease from the time I found out I had it. They also want to know every detail about how Sickle Cell usually affects me when I'm pregnant, which to me is the most medically dumb question you can ask someone who has never been pregnant before!

Okay, by this time I've told my life story to about three people, not including the nurse that checked me into the ER and the one that took my vitals. By the way, at this point I still don't have any medication in me, so I am doing my best to answer all these questions while still in pain.

Next to visit my ER cubby is Doctor #2, followed in my Nurse # 3, Nurse #1 and Nurse # 2. While Nurse #3 started working on finding a vein to insert my IV, Doctor #2 started asking more questions. At the same time Nurse #1 and Nurse#2 began checking my belly and fighting over who was going to listen to the baby's heart. At some point Doctor# 1 came back into the room and I found myself being asked questions from all directions.

This wouldn't seem like such a bad thing except for the fact that one of these people that were talking to me just happen to have an IV needle headed straight for my arm.

"Uhm, excuse me, but my wife is getting an IV in her arm right now".

Everyone in the room seemed to pause in mid-sentence as I did my usual scream for pain as the IV was inserted into my arms. The other nurses and Doctor#2 seemed to remember they had better things to do and promptly left the room.

As my IV was being secured Doctor#1 started talking to me about pain relief options.

"Well, we are going to put you on some fluids in a moment and then get you started on some morphine."

"No!!!!", Ray and I both shouted. "Michelle is allergic to morphine."

"Oh. Well, yes, I see now on her arm band. Okay, so no morphine. So, what can you take?"

After listing my drug history which would make any diehard drug addict envious, the doctor and the nurse left my room with the promise to return with some good drugs.

I wish to pause for a moment here to give some much needed praise to my husband. You know that part in the wedding vows that says, '...for richer or for poorer, in sickness and in health...'? Most couples go through these vows with the hope that they never have to experience the poorer or sickness part. Of course we all know that at any moment any one of us can be faced with the possibility of seeing someone we love in pain because of a sudden illness. But for someone to go into a relationship and enter a bond of marriage fully knowing that a sudden illness in their spouse is not only a possibility but a regular occurrence takes a level of love and strength that I never knew was humanly possible until I met Ray. And for that reason alone, Ray will always be my hero.

So, where was I? Ah yes, the drugs came and soon I found myself in "La La Land", blabbering away about random pointless things and not remembering much of what went on or what I said. By the time my crisis was under control it was about 7 pm. We had spent the entire day in the ER. I was given the okay to go home and on our way home we stopped at the Olive Garden for dinner. After eating my soup and then loosing my soup in the bathroom, Ray thought it was best to get our dinner to go.

At home we settled in on the couch spending the evening eating pasta and watching Food Network. Despite the doctor trying to kill me with Morphine the day turned out to be just another average day in the life of the Mattingly clan.