We had nurses bringing in stationery bikes; we played Wii bowling and boxing; we made up games with balls and balloons; we had a Music Therapist who gave us shakers, a hand drum, and a keyboard; we painted; we played Old Maid until I started looking like the Old Maid; we did her schoolwork; we stayed up until midnight (yes, on purpose); we had a 7-year-old friend come visit for a few days; we sang; we played Simon Says; and many, many more highly intelligible activities. :-)
Every day the team of neurologists would visit and ask if we saw any sort of seizure activity and all we could do was shake our heads in disbelief. They would encourage us and our devotion to the process, tell us they were lowering the doses of her anti-seizure meds, shake their heads in disbelief and smile at Ahnya on the way out the door. This was the daily process for 11 days.
On Day 10, the doctors finally said they were basically waiting for Ahnya to tell us she had enough. They were absolutely amazed that this little girl had not crawled out of her skin yet! This picture captures her state of mind...joyful!
Her spirit was so high despite the fact she had not stepped foot out of her hospital room for 10 days. Everywhere she went, she had to lug around all these wires and equipment that were attached to her.
I was crawling out of my skin! I thought for sure they were going to discharge her and send her on her way, but admit me for a psych evaluation! And yet, because Ahnya was being taken off her anti-seizure meds, she was an 'Ahnya' I hadn't seen in so long. She was vibrant, witty, mature, quick to respond, and alert! It made me so sad to think about how her medicine has been affecting her quality of life. My heart sank at the thought of all the time spent away from the rest of our family, her school, and my job. I decided that Ahnya had been a champ and deserved to have a rest from all of this craziness and we needed to go home.
I'm sure you can guess what happened within hours of me making that decision! Sure enough, on Day 11, Ahnya and her friend, Eliana, were unusually quiet as they devoured their meals on the floor of the hospital room. I had this indescribable feeling that I needed to shift the focus from my card game to Ahnya. Within 1/2 a second, I recognized the look an Ahnya's face and ran over to her, saying to myself, "Well, here we go!" As I approached her, my spirit was sad and yet eerily relieved. As many of you have mentioned, what a strange feeling to be asking for seizures. They are so scary to watch and experience with Ahnya. This one was so much worse for me. She had now been completely taken off all of her anti-seizure meds and was only protected by 'rescue meds' prescribed by the doctors who were watching her closely. I knew these 'rescue meds' would only be given to her in the event that Ahnya's breakthrough seizure would be so violent that she would not recover on her own. As Ahnya began to fall limp into my arms, the nurses rushed in and assisted. I saw that Ahnya's lips and toe nails were turning purple and all I could think was, "Thank you God for giving us the information we need in order to help Ahnya, but please don't leave us now." Once they gave her oxygen and moved her up to the bed, I had this overwhelming peace come over me and I began to weep. Within three minutes, Ahnya was no longer seizing and was able to breathe without her oxygen mask. It took her awhile to wake up and speak to us, but she came out of it on her own and did not need any medicine to help her. However, they still needed to capture 1-2 more seizures before putting her back on her meds and sending us home.
We were told that her EEG readings over the last 4-5 days were so strong that once she had her breakthrough seizure, she would probably have more to follow, and quickly. And boy, did they ever! She had 5 more seizures by 7:00 a.m. the next morning! There was a test they wanted to conduct that would give them really good information about where the seizures occur and what part of the brain they affect. So around 9:30 that morning, they took us to a different location where they could inject a radioactive isotope into her IV within 15 seconds of the beginning of a seizure, then do a scan to track the seizure. By 12:15 p.m. she had another seizure and they were able to get the information they needed. She was finally able to rest and they gave her some heavy medicine to calm her brain down and recover. She slept and slept and slept.
On Monday, February 28, the Neurologists came to share what we had been waiting to hear the entire visit. A plan. They showed us the results of the MRI, EEG, and SPECT Scans they conducted. The bad news was that they saw seizures coming from all over the left hemisphere of the brain. We were hoping that they were coming from one area because it would be easier to go in and take out the part that was causing all the seizures. The good news was that we still had a few positive options/outcomes. The first recommendation was to try one more medication to see if it can help Ahnya. If by the summer it is unsuccessful at slowing down seizure activity, we will return to Mayo Clinic for other alternatives. Some of which include a special diet, nerve stimulator, or a cortical stimulator. I won't get into the specifics of each of those, unless we are looking at them as options down the road.
The point is that our visit to The Mayo Clinic was a successful one and we were given additional information on Ahnya's condition as well as possible solutions. I am so grateful for Ahnya's neurologists, both new and old. Their wisdom and perseverance is beyond dedication to their profession. They have loved on Ahnya and think of her as a miracle child. We are humbly reminded of that every time Ahnya's case is reviewed and studied by a new physician. I am not embarrassed or shy to tell each one that I appreciate their hard work, but want them to know I still save room for a miracle to work in Ahnya's life...completely understanding that they may be an essential part of that miracle.
We spent a total of 13 days at the hospital on Mayo Clinic's Campus. It's a wonderful, old building called St. Mary's Hospital. About half way through our visit, Southern Minnesota was blasted by a winter snow storm. Minneapolis received a foot of snow, while Rochester got about 8 inches. One morning, in the middle of the blizzard, I noticed something peculiar about the sidewalk leading up to the main building of the hospital. I was trudging through the snow after acquiring my morning (mandatory) cup o' joe and I noticed that the sidewalk was completely clear of snow. Being 5:30 a.m. I thought, "That's nice! The maintenance people are on top of things this morning!" I soon realized that wasn't the case at all! As the snow was falling, it was melting away immediately. Most of the cement was actually dry. I asked the wonderful, elderly volunteer at the information desk about the sidewalk that faithfully kept me safe in the winter weather. She said that there is a heat source under the sidewalk that always keeps it warm, to a temperature that allows the precipitation to quickly dry. As simple as this sounds to some of you, it made me think about how prepared I have to be, as Ahnya's mom, to weather any storm. I need to be able to take in information, deal with it emotionally and physically, keep her safe, guide our path, and be ready for the next storm. How could I possibly keep my spirited daughter safe on the road that lies ahead without my 'heat source' under me, to make sure that I have the courage, strength, and wisdom to weather any storms that may come? These are the very things I pray for every day, all day. Thank God I don't have to rely on my own 'shovel' to guide us through safely.
Keeping my eyes on Him,
Melissa
Wow. Praise God for His faithfulness through some long days. So thankful the doctors got the information they needed and you got some answers! Will be praying...
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