Happy 31st Birthday! Enjoy Your New Nonprogrammable Shunt Valve! Part 3

So after dear sweet Diego left me at KU, I laid in the bed for 6 hours before a doctor ever entered info in the computer for treatment. By then pain killers were wearing off and anti nausea meds stopped working. I was puking with a 10 out of 10 headache, not a good combination. My adorable nurse kept apologizing for the delay and my non confrontational personality kept reassuring her that it was ok. After too many painful interactions, she proclaimed that she was going to go demand Dr. So and So get me some meds. Dr. So and So was a resident, and I would have to get used to numerous docs in my room because KU is a teaching hospital and I was on multiple services (neurology, neurosurgery, and cardiology and would add endocrinology before I left). By God, she did demand and he was in the room within 10 minuets. Never underestimate the power of a nurse. I now know they are the ones who really run hospitals like school secretaries are the true CEOs of schools.

I was set up with a Magnesium drip and Toradol for pain and anti nausea meds. The docs from all the services came by the next day and a Video EEG was ordered and an x-ray of my shunt was to be taken. OK, I may have scared a nuero surgery resident into the shunt x-ray because I was still skeptical of Basta's exit from the situation. That wide-eyed resident was fast in getting the x-ray machine into the room and getting an image of my shunt. That image showed my shunt HAD opened from a 2 to .5. Hallelujah! I wasn't crazy! The resident set me back to a 2.0 and became my new hero.
The older and wiser big-wig neurosurgeon came to the room and in a Brooklyn accent abruptly said we don't know why, but your shunt is opening on its own and we have to ship you back to Research to have Basta fix it. In my mind I was saying, hold on, you want ME to go BACK to the doctor that kicked me OUT? I immediately asked if they could fix it at KU? He explained that each shunt is put in on an individual need and the original surgeon is best equipped to fix it. Ok, that made sense to me and we hadn't had any problem with Basta's medical ability. He said he would call Research and hopefully get me over there soon. This was a Friday and I was still at KU on the following Tuesday. Obviously a phone call was forgotten and not made.

During this weekend KU was playing in the NCAA basketball playoffs and championships (and this was back when MU and KU were in the Big 12 conference). Furthermore, I had a Video EEG scheduled, and when you have a Video EEG done, little probes are literally cemented to your head and you are unable to shower or change clothes. So the clothes I was wearing upon arriving, were the clothes I was wearing when KU was fighting for the championship title. Unfortunately, I was wearing an over-sized bright golden MU shirt, so every nurse or doc gave me a "are you kidding me" look before getting to business. In Kyle's eyes, my unplanned alma-mater spirit in the the throws of the rival made up for flirting with Diego.

47 electrodes cemented to my scalp to see if I was having seizures at KU Med. 

 

Also at KU they don't threaten Bed Alarm they mandate it for those who pass out. It was the middle of the night and like always my bladder was full. I thought I would be sneaky and run to the bathroom real quick before anyone saw me. So I lowered the bed rail, put on my fashionable yellow hospital socks with white grippers, gather all the cords and wires and put one foot on the ground to lift myself and all of a sudden I am deafened by an alarm. After 30 seconds of alarm, a voice comes over a speaker in my room, "Miss April, do you need to use the restroom?" my nurse's aid, Ebony, asks in her divatastic voice. What do I say...do I admit to getting out of bed? Do I lie? Do I just stay quiet? My heart was racing and I began to sweat. I felt like I was kid caught stealing lip gloss at the Walgreens cosmetic counter. And how did they know I was headed to the bathroom? Was there a camera in my room? I sure was scared to admit my sin to Ebony, but I did. She came into the room and flipped on all the lights while nodding her head in disappointment. The whole time she was helping me pee she gave me a prophetic speech about why the hospital has me on Bed Alarm. The speech involved lawyers, nurses, doctors, my personal safety, God's plan, and that she didn't want to clean up the blood if I cracked my head open on the floor. By the time she tucked me back into bed, she had me convinced that Bed Alarm was my best friend. I really enjoyed Ebony and her sassy but caring attitude. That attitude will be the highlight of my stay at KU! When I got to leave she claimed she would come visit me at Research, but never did probably because she was straightening out other stubborn patients.

It was three days after Dr. Brooklyn had said he was going to send me back to Research. Still confused on why I was at KU, a headache began again. I was confident my shunt had opened again, so during "rounds" I went bat-shit-crazy on a poor neurologist who was trying to brainstorm other possible explanations for the syncope. A friend was visiting me during this fit, and he quietly backed himself into the corner frightened by the unleashed April while Kyle just let me go. I had been in 3 hospitals for nearly two weeks and this doctor was trying to find yet another reason why I passed out when the evidence was obvious! URRRRRG! The neurologist and I both ended up in tears, but the x-ray machine was back in my room showing the shunt had opened up for a third time depleting my brain of CSF. The neurosurgery team showed me their Magic Magnet Machine when they reset me. I had an iPad on the table and the Magnet Machine started blinking indicating a magnet. They also put the machine over my phone and headphones. All of these electronics had magnets in them. No one was willing to say if that was the cause of the shunt opening up, but it struck up an interesting conversation about electronics shunt patients use and if they interfere with the setting. If a programmable shunt valve is the preferred valve, they should be made with less sensitivity to common magnets.

Kyle was fed up with the lack of communication and called Basta's office and left a message with his nurse explaining the proof that the shunt had opened two other times and asked what were we suppose to do. Within minuets she called him back. I wasn't involved with the conversation, but Basta had been in surgery and was going to call KU as soon as he was out, and within hours I was at Research with preoperative orders to not drink or eat.

He had become a trigger for my panic, so I was very nervous about seeing him again. He came in and said "you took a little detour getting here, huh?" I was speechless to that remark, but I think that comment made my anger beat down my panic and I didn't have a panic attack in front of him. He continued with, "I hope you understand I needed you to go home and have another episode to verify a shunt malfunction." Once again I was speechless. "I didn't want you to have an unnecessary surgery." Still biting my tongue, because if I didn't either an attack would hit or I would mumble something incoherent out of anger; neither would get me closer to leaving the hospital. He explained the he didn't know why it was malfunctioning, but the valve needed to come out. He suggested a set valve that was not manipulated with magnets. I quickly agreed and he said he would see me in Pre Op.

I am a question asker and had become very fond of learning about my nurses and their stories. My nurse that day was a woman who shared her story when I asked. She had contracted Hep C (I think...it was the deadly kind) from a patient. As a result, her life would be cut very short. Luckily she was chosen to be in a research study that included 32 weeks of aggressive chemotherapy. Her and 1 other patient survived the 32 weeks out of 18 people. She was able to work only half days, but she did it with grace. Her story and a story I just heard this Xmas of a high school friend fighting lymphoma for the 3rd time makes me remember that IT CAN ALWAYS BE WORSE! I was not going to die from a shunt malfunction, and my kids will have their mom once all this crap is over. I am very thankful that I never, in this whole situation, had to look death in the eye. I pray for those who have had to think about their own mortality.
  
The next morning came and I had to wait and wait until Basta was done with all his scheduled surgeries. They came and got me around 4 pm and I got gitty because it was all about to be over. This was a stark contrast to my mood when they came to get me this December. In Pre op he used the Magic Machine and saw that my shunt had opened a fourth time since the transfer to Research. He assured me it would be a lot less invasive than the shunt fitting. Meanwhile, I couldn't decide if it was sad or comforting when the Pre Op and OR nurses recognized me from the original fitting. Ultimately I decided it was comforting and to allow myself to feel taken care of.

Everything in the surgery went smooth. I was the only patient in the Post Op so I talked it up with my nurse. She was pumping up nursing programs in the area. I always wanted to be a nurse, but Kyle rolls his eyes every time I bring it up. Just like I roll my eyes every time he brings up being a teacher instead of an attorney. When Basta came in to see me I told him that tomorrow was my birthday and I asked him if he would send me home as a present. Indeed, he sent me home at 9am the next morning less than 15 hours after my surgery. That day Kyle got a text from Dr. Blanner wishing me a happy birthday and he hoped I am enjoying my nonprogrammable shunt valve.

I don't know why I went through this elaborate parade of hospitals, doctors, and diagnoses. However, I learned that nurses work hard and deserve more money and vacations than they get. Also I learned a people have to listen to their own body and fight to get the proper treatment even if that means scarring residents and driving neurologists to tears. And it doesn't hurt if you have one good doctor in your corner!