How did we get here? I am feeling a lot of different emotions as we prepare to go to Duke tomorrow. If you’ve been following our story long, you know this wasn’t apart of my plan. We spent three months in the hospital, “fighting” this encephalitis and trying to build Walker back to his old normal. I thought the rest of the journey would be lowering medicine and increasing therapy. We have been inpatient, outpatient and now “in-home” for therapies. We do “alternative” therapies in addition to essential oils, Cannabis Oil and intensive chiropractic care.
In my attempt to cross things off my list as why he is still having seizures, I came across Dr. Ruth, a rheumatologist. Walker did have an auto-immune response when his VGKC antibodies were elevated with his Encephalitis. I have been wanting to visit her to see if Walker could have anything else going on that was not allowing him to heal properly. She tried to cancel our appointment several times citing that we needed to be in the care of a neurologist and not hers. I insisted that we meet just so that I know this was a dead end and could move on.
So, that didn’t happen, she wasn’t sure how she could help. Dr. Ruth suggested that we consider going to the Mayo Clinic or somewhere that specialized in what Walker has. Then she said that she had actually met someone this past weekend at a conference who had mentioned a clinic for Encephalitis but that she didn’t know the details, so she left the room and called her. Right? She had her cell number… and the other her, was Dr. Van Mater at Duke. Turns out she, a Rhematologist, and Dr. Gallantine, neurologist,started a clinic at Duke for Auto Immune Encephalitis Treatment. They have treated 120 kids with this sickness and 2 kids with VGKC. Right, what Walker has. She was so excited when she came back into the room that she had found some place close that specialized in what Walker has. I didn’t share her excitement and actually burst into tears as soon as she told me. I left feeling totally confused and actually mad that there has been this clinic the whole time that no one at the three hospitals we were at had heard about.
I seriously felt sick to my stomach to think that we could have left something on the table that could help him and meds? more meds? No, and it is the total opposite direction. Dr Ruth didn’t know complete details but that more immunotherapy , i.e.. steriods, possible IVIG , or Rituximab could be useful… I think I just begged God that this was wrong.. I can’t go back to another hospital.. I can’t leave Weston. I don’t want Walker to have needles and nurses and IVs.. I just can’t do this.
So, the next day, we met with Dr. Turner who had some incredibly new therapies called biofeedback and other neuro modulation techniques that he thinks will be effective for Walker. He also made a referral for us to get some Visual Therapy to help with his eyes and hopefully regain what was lost. We have an appointment with Draisin Vision Group in Charleston on May 18th. This was way more on track with MY plan and I tried to ignore the information that we had received the day before about Duke.
Of course, it didn’t go away and I would spend the next few days begging God for peace in turning this down. Then, Dr. Van Mater, called me herself. Oh. So that was new. We talked for about 45 minutes and she filled me in on the program and that they have found incredible results with continued Immunotherapy for Auto Immune Encephalitis. I shared my concerns and MY plan for Walker’s care and told her that I wasn’t ready to commit but that we would pray about it.. I was starting to change my mind but would still not be sold until a few days later.
I was begging God for an answer and to know that this was right or not right for Walker’s healing. Have you ever just heard God’s voice? Not audibly but had the holy spirit overwhelm you HIS word? I love it when this happens and long for more experiences where I know that God has enlightened me of his plan. Andy and I were at Haven coffee house and I was doing my bible study when I was reflecting over a question.. I found myself pleading the Lord again for direction.. I wrote on my paper, “you will go, eventually.”.. I didn’t even realize I had written it.. I just stared at the words .. shocked.. and scared.. but of course, that wasn’t enough.. Please excuse my inner dialog.. Was that you God? .. I wrote that down.. I remembered that. Yes.. “you will go, eventually”.. Okay.. but you better tell Andy the same thing.. lol.. Like the same words.. and I’m not saying anything until he says it first..
That seriously happened… About five minutes later, Andy asked me.. “do you have an answer yet? ” lol.. NOPE… I didn’t tell him.. So of course, I kept it a secret for a few more days until he finally said.. ” I think we are supposed to go.. ” I asked him if that was all he wanted to say.. lol.. I know!!! I’m crazy. So God didn’t give him the same words.. but we both felt like yes, we will go..For us, it was eventually.. begrudgingly. .. Duke wanted us there first thing last monday .. but we weren’t ready. I needed to know that this bizarre turn of events and suggestions were apart of HIS plan for Walker and not MUSC’s.
So, I needed more assurance. I emailed Simon’s mom, the little boy who had encephalitis in Atlanta the same time that we were there. He has made a total recovery. I asked her what treatment he did.. She responded.. Rituximab. I couldn’t believe it.. I don’t think we would have done this drug in Atlanta.. Walker was making such progress at that time. He had also just finished his second round of high dose steroids. Thinking that Walker’s plateau of healing could have something to do with possible inflammation might make sense. These drugs that they want to do or discuss doing are targeted at reducing inflammation.. If he still has this, then it could help decrease it.. and they have seen positive results with this course of treatment. Of course, the earlier the better but they have also done some cases several months later and seen success.
I don’t know that this will heal him. I am so incredibly hopeful. I am so incredibly desperate for my son to run and laugh and speak. For his seizures to stop and for us to move on with our lives.. In church today, Pastor Mike shared a story of an elder praying over another person..and asked God to take his hands out of his pockets and deliver them from their situation.. lol, I love that.. God knows our frustration and it’s okay to tell him that we are still here and we are still WAITING!
Please pray for safe travels tomorrow. Please pray for Walker’s healing brain and body. Please pray for me as I try to pack his blended food for a few days since we don’t know how long we will be there. Please pray for Wes while we are away and that he stays safe and happy. Please pray for our hearts as enter another hospital and Please pray for His will and His plan to be delivered and not our own.