Dr. Luedke just started running in the mornings with his dog, so he was in great need of coffee. And I thought, "Oh no." But it got better from there. He talked mostly to Andrew, and I wrote lots of notes.
Andrew was happy to find out he looks like a good candidate for surgery. But there is more testing first ~ even before meeting with a neurosurgeon. I have been coasting a little (or a lot) for the past few years in my medical stuff. I have been able to at least handle what has come our way. I admit that I cry sometimes feeling overwhelmed. I get a lot of headaches thinking or overthinking things. I get stomach aches and feel sick sometimes. But that is because I am not medically inclined. And today, I felt all of those things and more as I listened. I'll spare the details of what made me feel sick, but I will share the next steps we discussed.
Andrew will go back to Duke for another MRI, an FMRI (functional MRI), DTI (diffusion tensor imaging), and neuropsychometric testing. All of these sound like a breeze compared to what he has been through and what will come, should he want to continue on this path.
After these, if things go well, he would meet with a neurosurgeon who would discuss in more detail what the surgery would involve. Andrew would also have another surgery where they would place electrodes on his brain to track his seizures - like what he did before, except invasive. This is where I wanted to just go on and walk out of the room. But Andrew is shaking his head to continue.
Andrew's information would be in conference again by a team of doctors. They would try to determine if they could get what they need without causing harm to his movement or speech or anything else. They would hope to gain as much of that information as they could with the additional testing ahead of time.
The kind of lesion Andrew has on his brain, front lobe, and that it is on the right side should work in Andrew's favor.
If the surgery is successful, he would have a 50-60% chance of being seizure free. If the surgery does not stop the seizures, it could reduce their frequency and/or severity.
Andrew does not have that many seizures (well, he was doing well until spring). But he is at risk for SUDEP (death) and in danger for other accidents, and he is restricted in what he can do or where he can live. So it's a "pretty significant intervention for a pretty infrequent problem."
Up and down. Up and down. That is how I felt when the doctor talked. But he was making sure Andrew understood what he was saying. Then, he turned to me and asked me how I felt. I told him we wanted Andrew to continue to do what he wanted, and we would go from there. He is going to try to get him scheduled for the tests by the end of the year. Andrew has finally met his out of pocket for the year (after our insurance decided to process things differently, so it cost extra this year). Our premiums will probably double (per our BCBS letter), and the deductibles and out of pocket continue to rise exponentially, so we will have to start saving now to provide what he needs. The ACA has almost put my family under the last few years, but God has provided. He will continue to provide. I must admit that I wish I had knowledge ahead of time of how that will happen. I pray for the healthcare situation for my family and many others I know who are affected. That is a factor in all of this. I am trying to get Andrew some sort of supplemental insurance to help the cost after the huge premiums. I hope we can use some of the tax money we have paid in for years to take care of our own child.
So we left with a future appointment, a letter telling BCBS not to withhold meds because that could kill Andrew in just a few days (the doctor worded it a little better), and expectations of new testing pretty soon. And I was glad to get out of there.
This morning, I dreaded going. I was driving Sam to school, and Mercy Me started singing "Even If."
"I know You're able and
I know You can.
Save through the fire by Your mighty hand.
But even if You don't,
My hope is You alone..."
Oh, the tears started rolling down my cheeks. For some reason, Sam had gotten into the back seat, so he did not see me. I am glad I got that out of my system before we went.
This morning, I read Psalm 13. You can read the story of that Psalm in my blogs about Sam and how the Thrashers gave it to me when I was holding the landline phone at the hospital while stretching to hold Sam's foot while they prayed with me over the phone. I feel I start out whining but then praising God for Who He is and what He does.
Psalm 13King James Version (KJV)
13 How long wilt thou forget me, O Lord? for ever? how long wilt thou hide thy face from me?
2 How long shall I take counsel in my soul, having sorrow in my heart daily? how long shall mine enemy be exalted over me?
3 Consider and hear me, O Lord my God: lighten mine eyes, lest I sleep the sleep of death;
4 Lest mine enemy say, I have prevailed against him; and those that trouble me rejoice when I am moved.
5 But I have trusted in thy mercy; my heart shall rejoice in thy salvation.
6 I will sing unto the Lord, because he hath dealt bountifully with me.
I just stuck it in here, because I am sure someone else needs to read it too. Six short verses, Reverend Thrasher said. David goes from being "forgotten" to trusting God and rejoicing. I want to be there too.
I also got a voicemail from one of my best encouragers from Middle Fork. When she did not reach me, she left a voicemail and a text. She knew I needed to hear the word "workable" and the other word "peace." I know God can give me that. So I am resting (trying my best) in that.
I have had people feel comfortable enough to tell me over the years that they don't see how I deal with something like seizures in child. They could never do that, they say. I used to immediately ask God why I have to be that person? Why my child? But in my older age, these horrible things can be a blessing. I know how it feels to HAVE to trust in Him. I have had to CRY out to Him. I know how it feels to be DEPENDENT on Him. Nothing gets you like your child having something awful! So even though I would give this back (and still keep the other sicknesses, Lord!), I know it all draws me closer to Heaven and further from this earth. It keeps me focused on eternal things more.
We had a good, although loud at times, conversation on the way down. I know Andrew believes Jesus died to save us from out sins and that He is the only way to get back to the Father (God), since we have all sinned. John 14:6. But we were off on other subjects, and we were trying to talk/debate some important issues. And I finally told Andrew that it's a lot in perspective. I don't have time to tear apart a fellow Jesus follower's work (by Jesus follower, I mean someone trying to live as Jesus wants us to - really, not the way we want to or the way we want to compromise or interpret - so I mean a true Jesus follower), when I should be too busy trying to point people TO Jesus and show them who He is and what He did - and then what they can do to spend eternity with Him. We pretty much ended it there.
Dr. Luedke seemed a little impressed (for lack of a better word) that Andrew had such success in a short time in the EMU. So I told him that we prayed, and the seizures came. He laughed and said the EMU was weird and different, because it goes against what they normally try to do. So I told him we had tons of people praying and one friend kept saying "Praying backwards!" Because we all were. Now we are all praying forward again. And except for that one special test he may have in the next few months, I will continue to ask people to pray for no more seizures.
That's how we left it. We appreciate all of the love and prayers. I know that is what kept me calm, because this is hard for someone like me. Very hard. I don't want Andrew to have to do any of this. I am ready to throw in the towel and get another job and get him a seizure alert dog. And if he decides to do that, we will. But right now, the only way to get through this (for me) is to pray. And we appreciate all of the prayers prayed for us - for Andrew.
Thank you. I am posting one more verse. Short and simple. And thankfully, true.
Philippians 4:19King James Version (KJV)
19 But my God shall supply all your need according to his riches in glory by Christ Jesus.
