Andrew had a seizure a couple of weeks ago. It was bad and lasted a long time. And he is on three medicines! It took him over a day to get back to himself. We were in touch with the doctor, and he just told us to keep him updated (the neurologist).
Andrew also sent some extra dates to the neurosurgeon's assistant. They will get back with us. I am a little anxious, so I can start planning. On the other hand, without a date, it seems a little far off still and gives me time to get myself a little more together. Not just for schedules and hotels and such, but in my heart and mind as well.
Andrew called me Tuesday and told me "the weirdest thing just happened." He said he had everything he has going on right before a seizure, and it just stopped. That has never happened before, he said. And we know God stopped it. I ran and got him, and he has been more conscious about eating and not running low. A few weeks ago, he felt the same way (just not as far into it) and felt much better when I ran into Little Caesar's and grabbed him a pizza to start eating in the car. We always look for triggers, but his threshold should not be that low.
His numbers from his immunology appointment were good. His white blood count was a little low, but not bad. His IgG was normal - which is the huge number we check. His IgA is way too low, but it's stable. So we know that all of that should be stable and steady.
His thyroid check up in December was good with normal numbers. So all of that is on track. We will just keep trying!
So we know God stopped that seizure, and we are thankful. Someone may have been praying for him right then (a little after 2:00 pm), or it could have been the many prayers people pray - including his family. Prayer changes things. It works. We don't always get the answer we want, but we still need to pray!
Sam just got over the flu, and I really think Pete did too. Peter is not feeling well and needs to be checked. I don't know if Will sits still long enough to catch anything! We are going to see Pop and Sarah Saturday, so we have to be extra conscious and vigilant in keeping germs away from their house!
Pop has months, maybe weeks, his doctor said. His cancer has spread. Hospice started this week, and I am so thankful about that being set up now. He is in good spirits and knows where he is going. It will be very hard. We will miss him very very much here. But we grieve now and will grieve for him with hope that ONLY comes from Jesus Christ. Pop knows he is in need of a Savior, and he has accepted Jesus as his one and only way to Heaven.
Thanks for checking on us. I will post some dates when we get them. We appreciate all of the prayers and encouragement and offers of help. So much!
We have had lots of answered prayer lately. And so many for whom to pray! We are so super thankful He hears our prayers and wants us to come to Him! Oh, how He loves us!
"And this is the confidence that we have in him, that, if we ask any thing according to his will, he heareth us:" I John 5:4
Friday, January 26, 2018
Friday, January 5, 2018
Andrew's visit with the neurosurgeon
It's been a week. And I am so tired. But we appreciate ALL of the ones who check on Andrew and especially those who pray. So I am updating about his visit to the neurosurgeon at Duke today.
Tuesday, Andrew had an appointment in Winston. It was fine. It was his thyroid check up, and his numbers look good. We just have to keep an eye on his medication to make sure it's not switched, and he goes back this summer. Whitney went with us, and we ate lunch and shopped a little bit before coming home.
Wednesday, Peter and I took Sam to his diabetes check up in Charlotte. Dr. Parker is retiring, and I had to hold in my tears as we told him goodbye. He said we have worked as a team for the last eight years, and I am not good at giving up my good doctors. But he is tired of taking call (he took it all for the first 10 years and probably saved countless lives). And the new things the hospital have the doctors do keeps the doctors from doing what they know to do (to an extent). So I understand and wish him the best - he has worked hard and deserves retirement. His focus is on teaching a big Bible study in SC and spending lots of time at his mountain house about an hour from Boone. He also does woodworking and bird watching. We will so miss his random stories. I tried to recruit him to have a diabetes clinic at the peds office in Boone - and he said maybe one day. The check up itself was okay. Still feels like getting a C for A+ effort. We will still try to talk Sam into a continuous glucose monitor.
On our way back home, Duke called to schedule Andrew with the neurosurgeon. They asked if he could come Friday, this Friday. And I knew he would want to get it done before the semester starts back. So I got home and went to work to do end of month/year stuff and give myself a chance to get it all done on Thursday!
So we took off early this morning for Duke. And Whitney went with us again to be another set of ears. We had just one day to do the questionaires and get some information together, but we did what we could.
I had prayed that when we met with the neurosurgeon - the doctor who would do the actual surgery - that I (we) would know if he was the right one. I felt so sick on the way there today. I did not want to go. But I had to keep telling myself (again!) that it's not about me.
We had to wait a while, so we just sat there and talked. Then the doctor came in and immediately launched into the two step process. As he talked, I felt some of the burden lift. He did not say what I had in my mind - what I had heard from the neurologist. And that was a relief, because those things were the worst part of all of this in my mind. I won't share what I had been told, because it does not matter anymore.
Andrew will have a two step process. He will go for yet another MRI sometime in the next few months, before the first step. They will plan out all they need to do. Then he will go in on a Tuesday and have electrodes placed in his brain on Wednesday around the area that we have watched since he was born. The stuff that has caused other parts of his brain to give him fits (literally). He will spend a night in the ICU. Then he will go back to the EMU - where we were over Labor Day. He will have to have five seizures and will hopefully do that in a week. Then the electrodes will be removed, quickly, and he will be on antibiotics to fight any infection that may try to occur. (I asked if it would be the SAME EMU at Duke, and it will. I gave just two facts of our earlier stay, and I was assured - not patronized - that we would deal with this doctor and his team. We would have anything addressed immediately and would not have to wait for communication from people we don't know.)
Six weeks later, he will have the actual surgery where they will take out the problem area. He may have the surgery when he is awake so they can monitor movement, etc. He seems fine with that.
There are risks - general and specific. With both procedures. But they have had great success with few issues. His chance of being seizure free is around 60% or a little less. There is also a chance of temporary paralysis. That is why they may need him awake - to make sure it's temporary.
There are reasons Andrew is willing to go through all of this. To try. We are running out of medicine options. He had a seizure in November while he is on three of the top seizure drugs at high doses. He had six seizures in 24 hours when his meds were taken away over Labor Day. While doing this may seem extreme to some, we think God has let us see things in the perspective we need to see them in. He is 24, and this never seemed like an option before.
I asked God to just give me a sign. To let me know this was the doctor for Andrew. I asked Pete this morning if he had any questions for the doctor. He said, "Ask him where he goes to church." At the very end of the visit, the doctor asked us where WE go to church! No doctor has asked us that before. Then I asked where he goes to church. It's a big church, and Pete listens to their pastor all of the time (J.D. Greear). That was HIS sign. That all had to be God.
So while I am not excited about doing any of this (If you know me, you know I hate neurological stuff. I just do.), I felt a calm and peace today, that I wanted but did not expect. We have a lot of planning to do. We will look at our calendars this weekend and email Dr. Haglund's nurse so they can set him up for sometime this summer after he graduates. We will let you know when we have some dates. We will be setting up back up people and helpers. This first stay will be longer, and someone will have to be with him 24/7 as before. With what is going on in Pete's family, we need to have everything covered more than usual. And Sam. We will have to pray everything works out. Sam did so well last time and was so helpful. But that is a long time to drag him back and forth to the tiny hospital room every day.
In the meantime, we will prepare as best we can with lots of prayer. We are at the brink of all of this, and I know I am not ready. So we will all have to prepare. And I am thankful for the time we have to do that. We still pray for Andrew to be okay while we wait. And we pray that he may be healed. We know God can use this to heal him. We hope and pray that is His will. But His ways and His will are better than anything we can dream or think up. And we will have to hand it ALL over to Him. I think I am the one running a little bit behind. But I keep trying to remember Who is in control.
I know I mentioned this before, but when I tried to go through Joshua in Sunday School one year, I kept going back to Deuteronomy. I was surprised of the number of times God said He will go before us and be with us. And someone may have needed that, but I know I did. God already knows the outcome. And I know without a doubt He loves Andrew the most. So I will be holding on to many of these verses.
And the LORD, he it is that doth go before thee; he will be with thee, he will not fail thee, neither forsake thee: fear not, neither be dismayed. Deuteronomy 31:8
He doesn't want me surprised or discouraged. We won't be alone.
Thanks for praying!
Casting Crowns has a song ~ "Already There" - and one of my favorite parts is that my future is a memory - cause you're already there. That gives me great comfort and peace and assurance.
"Already There"
Tuesday, Andrew had an appointment in Winston. It was fine. It was his thyroid check up, and his numbers look good. We just have to keep an eye on his medication to make sure it's not switched, and he goes back this summer. Whitney went with us, and we ate lunch and shopped a little bit before coming home.
Wednesday, Peter and I took Sam to his diabetes check up in Charlotte. Dr. Parker is retiring, and I had to hold in my tears as we told him goodbye. He said we have worked as a team for the last eight years, and I am not good at giving up my good doctors. But he is tired of taking call (he took it all for the first 10 years and probably saved countless lives). And the new things the hospital have the doctors do keeps the doctors from doing what they know to do (to an extent). So I understand and wish him the best - he has worked hard and deserves retirement. His focus is on teaching a big Bible study in SC and spending lots of time at his mountain house about an hour from Boone. He also does woodworking and bird watching. We will so miss his random stories. I tried to recruit him to have a diabetes clinic at the peds office in Boone - and he said maybe one day. The check up itself was okay. Still feels like getting a C for A+ effort. We will still try to talk Sam into a continuous glucose monitor.
On our way back home, Duke called to schedule Andrew with the neurosurgeon. They asked if he could come Friday, this Friday. And I knew he would want to get it done before the semester starts back. So I got home and went to work to do end of month/year stuff and give myself a chance to get it all done on Thursday!
So we took off early this morning for Duke. And Whitney went with us again to be another set of ears. We had just one day to do the questionaires and get some information together, but we did what we could.
I had prayed that when we met with the neurosurgeon - the doctor who would do the actual surgery - that I (we) would know if he was the right one. I felt so sick on the way there today. I did not want to go. But I had to keep telling myself (again!) that it's not about me.
We had to wait a while, so we just sat there and talked. Then the doctor came in and immediately launched into the two step process. As he talked, I felt some of the burden lift. He did not say what I had in my mind - what I had heard from the neurologist. And that was a relief, because those things were the worst part of all of this in my mind. I won't share what I had been told, because it does not matter anymore.
Andrew will have a two step process. He will go for yet another MRI sometime in the next few months, before the first step. They will plan out all they need to do. Then he will go in on a Tuesday and have electrodes placed in his brain on Wednesday around the area that we have watched since he was born. The stuff that has caused other parts of his brain to give him fits (literally). He will spend a night in the ICU. Then he will go back to the EMU - where we were over Labor Day. He will have to have five seizures and will hopefully do that in a week. Then the electrodes will be removed, quickly, and he will be on antibiotics to fight any infection that may try to occur. (I asked if it would be the SAME EMU at Duke, and it will. I gave just two facts of our earlier stay, and I was assured - not patronized - that we would deal with this doctor and his team. We would have anything addressed immediately and would not have to wait for communication from people we don't know.)
Six weeks later, he will have the actual surgery where they will take out the problem area. He may have the surgery when he is awake so they can monitor movement, etc. He seems fine with that.
There are risks - general and specific. With both procedures. But they have had great success with few issues. His chance of being seizure free is around 60% or a little less. There is also a chance of temporary paralysis. That is why they may need him awake - to make sure it's temporary.
There are reasons Andrew is willing to go through all of this. To try. We are running out of medicine options. He had a seizure in November while he is on three of the top seizure drugs at high doses. He had six seizures in 24 hours when his meds were taken away over Labor Day. While doing this may seem extreme to some, we think God has let us see things in the perspective we need to see them in. He is 24, and this never seemed like an option before.
I asked God to just give me a sign. To let me know this was the doctor for Andrew. I asked Pete this morning if he had any questions for the doctor. He said, "Ask him where he goes to church." At the very end of the visit, the doctor asked us where WE go to church! No doctor has asked us that before. Then I asked where he goes to church. It's a big church, and Pete listens to their pastor all of the time (J.D. Greear). That was HIS sign. That all had to be God.
So while I am not excited about doing any of this (If you know me, you know I hate neurological stuff. I just do.), I felt a calm and peace today, that I wanted but did not expect. We have a lot of planning to do. We will look at our calendars this weekend and email Dr. Haglund's nurse so they can set him up for sometime this summer after he graduates. We will let you know when we have some dates. We will be setting up back up people and helpers. This first stay will be longer, and someone will have to be with him 24/7 as before. With what is going on in Pete's family, we need to have everything covered more than usual. And Sam. We will have to pray everything works out. Sam did so well last time and was so helpful. But that is a long time to drag him back and forth to the tiny hospital room every day.
In the meantime, we will prepare as best we can with lots of prayer. We are at the brink of all of this, and I know I am not ready. So we will all have to prepare. And I am thankful for the time we have to do that. We still pray for Andrew to be okay while we wait. And we pray that he may be healed. We know God can use this to heal him. We hope and pray that is His will. But His ways and His will are better than anything we can dream or think up. And we will have to hand it ALL over to Him. I think I am the one running a little bit behind. But I keep trying to remember Who is in control.
I know I mentioned this before, but when I tried to go through Joshua in Sunday School one year, I kept going back to Deuteronomy. I was surprised of the number of times God said He will go before us and be with us. And someone may have needed that, but I know I did. God already knows the outcome. And I know without a doubt He loves Andrew the most. So I will be holding on to many of these verses.
And the LORD, he it is that doth go before thee; he will be with thee, he will not fail thee, neither forsake thee: fear not, neither be dismayed. Deuteronomy 31:8
He doesn't want me surprised or discouraged. We won't be alone.
Thanks for praying!
Casting Crowns has a song ~ "Already There" - and one of my favorite parts is that my future is a memory - cause you're already there. That gives me great comfort and peace and assurance.
"Already There"
From where I'm standing
Lord it's so hard for me to see
Where this is going
And where You're leading me
I wish I knew how
All my fears and all my questions
Are gonna play out
In a world I can't control
Oh, oh
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
Oh, oh, oh, oh
From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
One day I'll stand before You
And look back on the life I've lived
I can't wait to enjoy the view
And see how all the pieces fit [x2]
One day I'll stand before You
And look back on the life I've lived
Cause You're already there
You're already there
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
Lord it's so hard for me to see
Where this is going
And where You're leading me
I wish I knew how
All my fears and all my questions
Are gonna play out
In a world I can't control
Oh, oh
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
Oh, oh, oh, oh
From where You're standing
Lord, You see a grand design
That You imagined
When You breathed me into life
And all the chaos
Comes together in Your hands
Like a masterpiece
Of Your picture perfect plan
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
One day I'll stand before You
And look back on the life I've lived
I can't wait to enjoy the view
And see how all the pieces fit [x2]
One day I'll stand before You
And look back on the life I've lived
Cause You're already there
You're already there
When I'm lost in the mystery
To You my future is a memory
Cause You're already there
You're already there
Standing at the end of my life
Waiting on the other side
And You're already there
You're already there
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