Many people have been asking about Wyatt and how all of this started so I thought I would try to write about it here. I apologize in advance for its length!
Wyatt was diagnosed with epilepsy after having several complex partial seizures 5 months before he turned 6 years old. We were blessed that the first medication we tried worked for him and with the exception of breakthrough seizures now and then, we thought his epilepsy was well managed. There were a few concerns I had and brought to his neurologist's attention, such as nighttime and memory issues, but I was assured they were nothing to be concerned about and we continued on our way. In preparing for our trip to Uganda, our very first step was to meet with his neurologist where we were assured that he was no more at risk of seizure issues there then he was here. Even with everything that has happened since, we still believe this to be true. In the months leading up to our trip, Wyatt was having more breakthrough seizures but we were assured that he was going through a growth spurt and that we merely needed to increase his medication to get them back under control.
A few days after arriving in Uganda Wyatt had a small seizure. We were used to this situation. We called his doctor and then upped his meds. Same ol' song and dance. A few weeks later Wyatt had his first "hallucination". Obviously this was different then what we were used to seeing with him but he has had issues with overheating in the past so we thought that maybe it was related to the heat of Uganda and that maybe he wasn't getting enough water. We spoke with his doctor, took him to the clinic on the ranch (where he tested negative for several tropical illnesses) and started him on a rehydration solution that we gave him several times a day, everyday for the next month. He continued having these episodes every couple of days but other than that he was typical Wyatt! He played soccer just about every day with his new Ugandan friends. He helped the mission teams that visited with every project we had going on including mudding a school, repairing a playground and sharing the gospel. We had no reason to believe, and his neurologist at home did not believe, that these episodes were related to his seizures or that there was anything worrisome going on with his health other than needing to stay hydrated. Regardless, we made an appointment for June 15th with a great & very well respected british doctor in Kampala, under the advice of Wyatt's neurologist, just to ensure that his episodes weren't related to some illness that we had missed.
On June 14th we were hanging out in our den after Wyatt had gone to bed when we suddenly heard strange noises coming from his room. Wes & I entered his room and found Wyatt in the middle of a generalized tonic clonic (GTC or grand mal) seizure that lasted about 20 minutes and required diazepam to bring him out of it. The next morning we left early for Kampala. I had a small bag packed for Wyatt & I along with our passports, just in case we ended up staying in Kampala in hospital or getting on a plane for home. We met with Dr. Stockley and determined that Wyatt was completely healthy & that there were no known illnesses responsible to his condition. There were only two things that had changed for Wyatt recently: 1) he came to Uganda and 2) he began taking Doxycycline as a malaria preventative. The doctor recommended that before we made plans to leave, we should take Wyatt off of the doxy for one week and see if maybe it was causing his episodes. This coincided with Wyatt's neurologist's recommendations that these episodes were not seizure related and that they must be caused by something environmental. Although we were both worried for our son, we were at peace with giving him one more week, without doxy and with another increase in his seizure meds, to see if this got rid of his episodes.
One week later, on June 20th Wes had gone to Kampala with the mission team from Mobile and I was at home with the kids. Wyatt wanted to sleep with me so we were watching movies in our bed as we went to sleep. Around 5:00 am, June 21st, I was woken up by Wyatt having another GTC event. This time I knew God was telling us it was time to get Wyatt home. After several teary eyed calls to Wes and hours on the phone with Delta & KLM, we got approved to fly home early.
In a total God moment, after being told we needed to get a letter from a doctor in Uganda saying it was medically necessary for Wyatt to go back to the US, Wes was able to see Dr. Stockley who knew exactly how to word his letter to get us home quickly and with as little cost as possible, while also making sure it was understood that Wyatt was medically sound to fly…because Dr. Stockley is the board physician for KLM in Uganda. Of course!
Once we got back to the US, we went straight from the airport to the neurologist's office where we were told to check in to Children's Hospital the next morning. After 24 hours of EEG we were told by the epileptologist (a neurologist who specializes in epilepsy) that Wyatt was having an uncountable number of seizures at night and that the episodes we originally called hallucinations were indeed seizures. While this was not what we wanted to hear, it was definitely a relief to know that there was nothing we had introduced to his environment, including taking him to Uganda, that was causing Wyatt's seizures. The doctor believes that it is possible that the stress of living in such a new and different environment might have contributed to the number of seizures, but that based on the number of breakthrough seizures Wyatt was having even before we left, that this event was a long time coming. Over the next 2 days of continuous EEG monitoring Wyatt was given a new seizure medication and his blood levels were monitored carefully. Unfortunately he continued to have multiple seizures, especially at night. After those 2 days another medication was added, more blood was taken, and we continued to wait to see what the EEG would show. Again, we were disappointed to hear that he was still having seizures at night and that because now three different medications had failed to control his seizures, his condition was now labeled "intractable epilepsy".
With this new diagnosis our options for Wyatt's treatment have dwindled. Over the next month or so he will undergo a series of tests to determine if he is a candidate for epilepsy surgery. While the prospect of brain surgery is terrifying to us as parents, we understand it is possibly our only remaining option and possibly the best opportunity for Wyatt to be cured of epilepsy.
The first of these four tests was an MRI. He completed his MRI on Monday July 1st and it was clear. This is a good and bad thing. Good because they didn't find a tumor or any other growth but bad because abnormal brain activity with no known cause is much harder to treat. On Wednesday July 10th Wyatt will have test #2 , a PET scan, and on July 29th we will check back in to Children's for a 6 day stay of EEGs and hopefully test #3, a SPECT scan. Test #4 is a neuropsych eval to help determine where there might be gaps to help identify where his seizures are originating. Right now it is scheduled for Oct 15th, but he is on the cancellation list and we have been assured that this date will be sooner then scheduled. After these tests are concluded Wyatt's case will be presented to the nuero surgery group conference and they will make a recommendation either for or against surgery.
While we don't know or understand why all of this is happening now, or why God sent us to Uganda for 2 months only to call us home early, or what surgery means for Wyatt's future…we are more confident now than ever before that God is soooo in control! Even though we are sad that we didn't get to accomplish all that we set out to do in Uganda, we know that whatever it was that God wanted done through us must have been done, or we would still be there. Right now it is hard for me to think about anything other than my son but I am comforted by the absolute knowledge that there is someone that loves him more than I could ever dream of & that He knows exactly what is best for him and can make it happen.
It would be remiss of me to close this post without praising the awesome people that have lifted us up and carried us through all that we have gone through so far this summer. First and foremost, our families have been beyond supportive, sending us care packages, sending endless text updates on everything going on at home, making doctor's appointments for us when we got home, researching medications and syndromes, helping us unpack and do laundry, while listening to us, holding us and loving us through it all. Secondly, our church family has truly shown us what a "church body" really looks like. They have called, texted, emailed, mailed and face timed through our whole time in Uganda and fed, cleaned, visited, laundered and loved us through our time since we've been home. We have been overwhelmed by how they've loved us. Thirdly (is that a word?) we must thank our friends all over the world that have checked in on us, texted us or sent us a message on Facebook just to let us know they were thinking about us or praying for us. We truly truly consider ourselves so lucky to know and love everyone of you! Thank you!
