Tuesday

I seem to have leveled out since Saturday at a  headache that is quite tolerable.  If I can stay at this level I would be okay.  Still can't handle much noise and activity, but otherwise things are going pretty well.  I am thankful for each good day that I have!

Sunday

A blessing again to be able to attend our worship service twice today.  It is so easy to just take that for granted, but I have learned to appreciate it  a great deal!

I made it to the drill team performance.  Kylie was so happy!  Unfortunately I woke up not feeling well at all on Friday but I did a few things to try to improve my head and it did get a bit better as the day progressed.  I ate with the family at the tailgate party and then we headed to the stands for the football game.  Only a couple minutes there before the game started made it clear that the game just was not going to work for me.  So I went back and sat in the van until Kyle texted me that the drill team was about to start.  I walked over to the fence next to the stands, watched the drill team then walked back to the van.  I was very happy to be able to attend it, but it would have been nice to watch the game with the family.  I have spent quite a few hours sitting in the van waiting until my kids actually perform in an event and then waiting in the van until the event is done.  It is much better than missing these ocassions, but it does become a bit lonely.

Thankfully, Saturday and today have been better days.  What a blessing it is to have a (more) clear head.  I didn't even use earplugs during church today, and that is a first for a while now!  :)  I am praying that I can level out with my head feeling like it has today.  It isn't perfect, but much more doable than it has been.

Thursday

I contiue to struggle with gaining strength.  I become quite exhausted each day and not sure how to get this moving in the right direction.  My head is doing okay but not nearly as good as it was this summer.  I pray that I can "get there" again and maybe stay there longer.

Sometimes it is hard to believe all that has happened.  Can it be true that I have had five surgeries in my brain in the last few years plus several more surgeries?  I think we each just walk through life assuming that these types of things happen to other people and now I am one of those "other" people.  Normally I go through each day without thinking about these things, but sometimes I do stop and wonder how this became my life.  So many people don't know the "real" me but this person that I have become.  It was so exciting to be able to peak out this summer and introduce the real me.  I am sad that the real me has disappeared again.  I am particularly sad that my kids are growing up with just a part of their mom there.  Tanner and Kylie has some memories of the real me and Riley and Tara obviously don't.  I pray that the Lord's plan includes having my health restored or that He gives me the strength and fortitude that I need each day if that isn't in His plan.

Tuesday

What a rollercoaster life can be!  Today was not such a good day.  The only comforting thing to me was that I had pain in my head rather than a headache.  There really is a difference.  The pain hurt more than I like to think is so tolerable, but still better than a headache.  Strange.  I hope tomorrow is better!

Family picture August 2011

(2 short weeks after my recent surgery!)

Monday

Sunday I started feeling better!  My head had been feeling better but I was really dragging and just not feeling well prior to that.  I think it just takes a while for my head get used to a different pressure.  My poor brain has been a bit traumatized over the years.  My headache isn't entirely gone this time, but much more tolerable.

As I said, I am feeling better but still struggling some with the sensitivities yet.  I needed earplugs throughout both church services, but I think that will improve.  Overall I do feel better and hope that I can stay this well or better in the coming days and weeks.  The weakness and inability to multi-task or even separate more than one voice talking at the same time is still quite frustrating but will also hopefully improve.  One day at a time, I continue to remind myself (and Kyle reminds me as well!)

My dad is doing better but still struggles quite a bit with dizziness all the time.  This may very well be a problematic thing that can wane in ebb in severity, but he is carrying on pretty well right now.  He is a tough guy so you can't always believe him if he says that he is fine. 

Tami is getting a second opinion on her cancer diagnosis and treatment on Wednesday.  We are thankful that she is getting a second opinion and pray that the direction and treatment choice is clear for her.

Tanner had an appointment this morning to x-ray his foot to see how the broken bone is healing.  Thankfully it is healing well.  He was disappointed to find out that he will be on crutches at least three more weeks, and then a period of time longer with the boot and no crutches and then a period of limited activity.  He was quite determined to run the last cross country race in three weeks hoping he would be done, and although I warned him that wasn't likely he was very disappointed when the doctor told him what the next few months would look like.  His youthful exuberance was stifled a bit today.  :)

So we all continue to move forward.  Life is certainly not easy and some days seem to go a little easier than others.  Again I long for the normal things of life but am thankful that I am able to go to church and am spending more time in the office.  I pray that as the days pass I can expand my horizons a bit and start "living life" more than I have been able.  My goal right now is to have my head feel well enough to watch Kylie's first drill team performance at a football game.  It takes a lot of energy to go to something like that and my head has to be tolerable enough to handle the noise and activity of all the people so it is a big goal but something that is very important to me and to her. 

Saturday

My head continues to do pretty well!  As I said yesterday, I seem to have this lingering effect which is strange.  My headache is mild but I still have a lot of the issues of having a headache like sensitivity to noise, etc.  That has happened the last few times, though, so it is not surprising to me this time.  I am still feeling quite exhausted a lot of the time which can be so frustrating!  But hopefully that will gradually improve.  I am scheduled for a spinal tap on Tuesday so we will see how I continue to do before making the decision as to whether I should have it or not.  For now I will enjoy having my head feel so much better!

Rejoicing!

So far this morning I am feeling really good!  Oh, I am so thankful!  I have been singing hymns of praise to myself all morning!  :)  I am not entirely sure if the headache is completely gone and will wait to say that for another day or so.  After a bigger adjustment like this one, I seem to have a bit of a hangover affect as my head adjusts to the big change.  We adjusted the shunt 4 notches down this time.  So we will see what time brings, but at this point I am pretty happy and thanking the Lord for His goodness to me!

Thursday

My dad is back home!  His strength has improved but the balance/dizziness is still a problem  He is having difficulty walking because of it.  The doctor suspects Menierres (spelling?) disease, which is a problem with the inner ear.

I woke up with my head hurting quite a bit more today.  I did have my appointment, though!  The best part is that we really liked the neurosurgeon and he adjusted the shunt!  We went into it pretty skeptically but were quite pleased.  He did x-rays to see if there was anything visibly wrong with the shunt and tubing and he couldn't see anything.  He adjusted the shunt down four notches (which was exactly the setting that Kyle and I were hoping for but didn't verbalize) which will decrease the pressure a little.  The big question now is whether that will make a difference.  Anticipating that it won't take care of it, he is scheduling a spinal tap next week.  JH was going to do one of those a couple weeks ago when I was there but then did the ct scan and decided not to.  The doctor would have done the spinal tap today but I had taken a Toradol shot this morning which also acts as a blood thinner so it wasn't safe to do so.  He wasn't alarmed by my medical history, asked questions for good reasons and seems very willing to work with me!  What a huge answer to many prayers!  He was knowledgeable, kind and will work with me which is a package that is hard for me to come by!!

Wednesday

Today started with a bang.  My dad is in the hospital.  He woke up abruptly about 3:00 this morning with severe dizziness and nausea.  He made it into the bathroom but completely lost his strength and was not able to move off the floor after getting there.  Ultimately the ambulance had to come and get him and he was admitted into the RV hospital.  They have the nausea somewhat under control but the dizziness is still very bad and he is very weak.  The doctors feel that they have ruled out stroke and heart attack, which we were relieved to hear, but they don't have a diagnosis.  They suspect a problem with the inner ear.  I had just seen my dad last night and he was doing very well, so this was quite unexpected.  Dad is always very strong and independent so it was hard seeing him in a hospital bed and knowing that he let mom call the ambulance last night alone tells me that he was and is very sick.

I called Omaha today and they said now that they hope to have an answer by Friday.  The ns that I have an appointment with tomorrow had his nurse call me today.  She had a lot of questions, including how I got the appointment in the first place.  She is going to discuss things with the doctor and let me know if I can still come in or not tomorrow morning by 8:30.  I am not surprised by this but it will be interesting to see if he still agrees to see me.

Tuesday

I didn't hear from the neurosurgeon group in Omaha today.  They had said they would let me know by today, but I have heard that before.  This group is the one that I have been the most hopeful about, but not hearing for this long does not bode well for their answer. 

I received a confirmation from the NS in SC, so I should be going their Thursday morning.  I am praying that they will have the expertise to do the shunt patency test which at this point is critical in determining the next step.

Monday

I got another "no" today from a neurosurgeon.  I am waiting for an answer from two more that are in the same group and I am supposed to hear tomorrow. 

Sunday

My head continues to not be so good.  As I have said before, it could be much worse but after being headache free this summer it is very difficult now to go back into the headache mode.

I spoke with the nurse practioner of my neurosurgeon at Johns Hopkins.  The NS is out of the country for a few weeks.  The NP felt that it would be a "knee-jerk reaction" to just go and adjust the shunt down so that my pressure would go down.  Since I had done well this summer at the particular setting I was at and now since surgery my headache has returned she is wondering if the surgery somehow caused the shunt to no longer drain as well, particularly in the drainage tube in my abdomen.  So she felt that a shunt patency test, which I have only had done once and only at JH may give us more answers.  This test requires that they inject radioactive isotopes into the tubing right about the shunt pump and then follow it through something like an x-ray to see how it drains and how long it takes.  (This is my description but may not be exactly accurate!)  We would then see if the shunt is draining properly.  If that comes back looking okay, then she suggested that we reschedule the inpatient cerebral spinal fluid monitoring test that they had planned for last spring when I was there and then cancelled.  They would monitor the pressure in my head for 5 days to see what my pressure is on an ongoing basis and see what affects the pressure.

I still haven't heard from the neurosurgeons that I contacted about taking my case, but one told me they would have an answer by Tuesday.  There is one exception and that is in S. City.  I was declined about 7 months ago by a particular group after they reviewed my records.  I called them this week at a friends urging (thank you gg!) and they agreed to make an appointment without even seeing my records.  I am a little reserved about this but I sent my medical records as they requested and will see if they change their minds after their review.  The only thing that has changed is that now instead of being under the care of the ns in SF that caused me so many problems, I am under the care of Johns Hopkins. 

My hope is that one of the ns will accept me and work with JH.  JH seems think that the shunt patency test is something that is fairly straight forward and should be able to be done nearly anywhere.  I am a little more skeptical since I have never had this test until going to JH but we shall see.  Of course, if the outcome is a problem with the drainage of the shunt, I will be looking at another surgery.  If the in hospital test is ordered, I will be back on my way to Baltimore and I can't even see my way through that right now.  So the outlook isn't all that encouraging right now.  Again, one day at a time.  The Lord has a plan that is right for me.

Thursday

During devotions today I read a bit about Jonathan Edwards.  He wrote 70 Resolutions, and I thought this one spoke to my life particularly at the moment.  I am looking forward to the "after afflictions" part!  :)

"Resolved, after afflictions to inquire what I am the better for them, what good I have got by them, and what I might have got by them." 

I can't quote them all, and they are very good.  But another that I like is:  "Resolved, never to do any thing, which I should be afraid to do, if I expected it would not be above an hour, before I should hear the last trump."

Wednesday

I have had a lot of practice in functioning with a headache, and I guess I am honing up my skills.  It is not the worst that I have had by far.  Not real great, either.  I am going to work in the morning and trying to spend time resting my brain and call "local" neurosurgeons in the afternoon.  This calling of doctors is discouraging and I am disliking the task, but I would really like to have someone from around here adjust the shunt soon rather than go back to Baltimore. 

Noise is still a big issue, and not so tolerable.  I am noticing more light sensitivity again, my ears are ringing louder and I try not to move my head much.  I believe that I have recovered much of my ability to eat, although not yet to the point that I was before this last surgery.  However, I am nauseated all the time again.  It is rather strange because that nausea doesn't seem to be affected by eating or lack thereof, so I think it is again pressure related.  Of course if I eat the wrong thing, it gets worse and I have pain in my abdomen.  I really prefer pain in my belly than pain in my head, though, if I had the choice between the two.

Tuesday

I have recovered from the exhaustion for the most part.  My head, however, is not any better.  It is discouraging.

Sunday

I am still very tired and not feeling so well.  It does concern me but I am hoping that the being so busy the last three days is still having an affect. 

The flight Thursday went well.  Getting to the hotel from the airport was rather crazy because of a big car race being held in Baltimore.  Friday we left the hotel at 6:40 am in anticipation of traffic issues since the first car race started at 8:00.  However, we were able to get to Johns Hopkins shortly after 7:00.  We waited for the doctor for 2.5 hours because of an emergency surgery.  To make a long story short, I had three times I was sent down for x-rays to check the status of my shunt and one ct scan so they could compare my ventricles now to how they had looked when I was there in June plus blood tests.  Since my ventricles are still incredibly small they felt that the best choice would be to continue increasing the pressure in my head.  I was impressed, though, that the doctor listened to me and saw me three times in between the tests.  He didn't just ignore what I said but checked things out before making a final decision.  He is very knowledgeable and kind.  Very refreshing.  We didn't get back to the hotel until about 2:30. 

I asked about my seeming inability to regain strength and in his Italian accent to told me that when the pressure in your head is off, you will feel like you are "crashing."  I asked for some clarification and he said that I will just be very tired and unable to gain strength until we find just the right setting.  It is reassuring that he feels that we will get there, but rather frustrating in the meantime when I am not growing in strength like it seems I should.

The flights yesterday were interesting.  The first was fine, but flying out of Minneapolis a little different.  We took off and about 15 minutes into the flight we were told that we were turning around and going back to Minneapolis because there was something wrong with the plane.  They felt that it would be unsafe to continue.  After landing, we and the airline weren't sure how we would get home but after about an hour they found a new plane for us and we were flown back.  Huge relief.  We suspected that we would be staying overnight in Minneapolis and flying out the next day because the flight was not at all full.  It was so good to get home!

I am quite exhausted yet and not feeling so good.  The jury is still out as to whether the adjustment was made in the right direction.  I had hoped that after a good nap today that I would be feeling better and that is not the case.  Hopefully because it was just so busy the last days with flying out, spending a big day at JH and flying back but as the day progresses I am becoming more concerned.  I really wish there was such a thing as a head transplant!  :)

Isaiah 40:31
But they that wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
They shall run and not be weary;
they shall walk and not faint.

Saturday

I will go into more detail later, but I did make it home.  Had a few interesting experiences, but the doctor was fantastic and after some testing did decide to adjust the shunt to again increase the pressure--opposite of what I was thinking should be done.  I am too exhausted to determine how I am doing but the adjustment was only changed 2 notches where last time it was adjusted 7 so it shouldn't be a dramatic change compared to last time.  So thankful to be home!