Sunday, November 10, 2013

LONG week

We have had one of the longest, hardest times of my life. Monday morning Noelle was in more pain than usual. We were considering going to the ER just for pain management when she had what I would call a seizure. Her entire body seized up and she was uttering unintelligible sounds. I called my mom to meet us at the ER. Scott was hunting. I went to the car and got the wheelchair and put her in there. I wasn't sure how I was going to get the wheelchair out of the house. We do not have a ramp and have a few steps out of all entrances to our home. She had a small break in the spasms and was able to walk to the car. When we got to the ER her condition was bad enough that we skipped over all the waiting people and they took us to a room. It is always a risk when you go to the hospital what reaction you will get when you mention Lyme. We were lucky to have a doctor that was OK with that diagnosis. They were able to give Noelle muscle relaxants, pain relievers and anti-nauseau. A huge answer to prayer was that they were able to get her IV and blood draw on the first attempts. The IV was even done by a EMT student! They also did a CT scan. The CT was clear and they were able to calm her spasms but they could not get her pain under control. Noelle was admitted to Covenant Hospital.

Noelle had a surprise visit from her good friend, Kaylee. Kaylee now lives in Kansas City but had to return to Waterloo for a family emergency. Kaylee was recently diagnosed with Crohns, so she has spent some time in the hospital herself. When Noelle saw these pictures on her phone she did not remember them. Tuesday was an exhausting day for her.

Noelle loves cupcakes, so she loved this flower arrangement that Grandma Mary brought. Especially since it features pink flowers, her favorite, and a LYME cupcake base!

Throughout Tuesday Noelle had almost non-stop episodes. It was terrifying. All of the nurses were fantastic and cared for us like family. Noelle's pediatrician was very accessible and brought in a neurologist. They did an EEG which appeared to be clear. However, the neurologist observed an episode and suggested that if the muscle relaxants were not working by the next day that we be transferred to Iowa City where they have a pediatric seizure unit. So on Wednesday she was transferred to Iowa City by ambulance, lights and sirens. Once again we had answered prayer. Chad and Laura were very accommodating as our ambulance EMT's. I was allowed to ride in the back right next to Noelle. I was so glad especially when she had an especially bad episode that lasted the remainder of the trip, throughout the Iowa City lobby and halls, and into one of the rooms.

When we reached Iowa City our frustration was pushed to a whole new level. Our doctor had pre-arranged for this transfer. We expected her care to continue seamlessly, that was not the case. The ambulance drivers had to remove her pain relief and fluids. She was not reattached to pain control for three hours!!! During this time she had multiple episodes in front of nurses and residents. All anyone wanted to do was talk about her situation. It was so awful. We both felt like we were suffering from PTSD by the time her pain and spasms were somewhat controlled. When we finally met the actual pediatric specialist, not a resident, we did like her. And she worked well with Noelle's Lyme diagnosis. She even commented that Noelle's situation revealed chronic Lyme, as Noelle received a CDC positive test result long after any known tick bite or exposure to ticks. She elected not to involve the infectious disease department since Noelle was already under care by a Lyme specialist. This was great for Noelle's immediate care, though we have had people suggest that it may have been a good thing for the Lyme cause as a whole if her case had been researched by them since she has a positive CDC test. We just did not want her used as a guinea pig, especially when she was in so much pain!

The communication in Iowa City was very frustrating. I am sure that is because it is a teaching hospital and every decision has to go through teams of people. Other than our original problem receiving pain control we had other incidents of miscommunication. They decided to do another EEG. The technician told us it would be on for 24 hours. After two hours they came and removed it leaving us with many unanswered questions. Had the results proven or disproved something? Especially scary when the word Epilepsy was being used often.

The other big issue was the MRI. One of the reasons we were transferred to Iowa City was to get an MRI. Our local hospital was having such trouble controlling Noelle's spasms that they were unsure that they could keep her still for a MRI. The doctors in Iowa City went back and forth about when and if we were having a MRI. Early Thursday Noelle's IV came out. Iowa City had a hard time even drawing blood on Noelle. They ended up "scooping" blood as it dripped out of her. They decided to put in another IV to do a contrast MRI. We were also assuming it was to resume IV pain control. They did end up placing an IV on the second attempt. She never received more IV pain control. AND....she never got an MRI. Eventually a neurology resident evaluated Noelle. She, finally, told us that the EEG revealed that Noelle's brain activity was not affected during her episodes so they were not technically seizures. She felt with this information and her exam it was unnecessary to do an MRI and we could be released. (Remember this is why they put in the second IV.) So we prepared to leave. Noelle was past ready to go home despite her continued pain and spasms. I tried to be reassured that a MRI would reveal nothing new. As we were preparing to leave the actual neurologist appeared and repeated Noelle's exam. It was just crazy!!

So we returned home Thursday night. Noelle has continued to have episodes and lots of pain. Yesterday one of her episodes lasted over an hour and a half. It is miserable for everyone!! She has not had one yet today though she is in horrible pain. Please pray that we are able to find the correct treatments for this horrible disease and her new symptoms.

While Kaylee was helping Noelle to enjoy a little normalcy they made this great video. I cannot get the video to load correctly. Here is the link:

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