Wednesday

Tomorrow I head to Baltimore for a shunt adjustment at Johns Hopkins.  I am very concerned about it because they plan to adjust it assuming that my pressure is too low, but I suspect my pressure is high.  I fly back Saturday and my appointment is Friday morning so there isn't a lot of time to readjust if it is not done correctly.  Please pray for wisdom for the doctor.  I a thankful that my sister, Karleen is coming along to help.  Kyle can keep things going at home, for which we are both thankul.  He is getting rather sick of going to doctor visits and Karleen is tickled to go. 

I continue calling and asking neurosurgeons and a few neurologists if they would consider taking me on as a patient and working cooperatively with JH.  This is also a very big concern.  I've gotten "no" answers but no "yes" answers yet.  I have expanded my calling to about an 8 hour radius of home. 

Anyone who reads this that live in our area, I have a favor to ask.  Tara has some learning disabilities which require that she be given specialized tutoring in SF three times a week for 6-8 months.  She has to be there (this might change) Tuesday and Thursday at 6:00 and Saturday at 11:00, each time for an hour.  If anyone has a trip planned to SF around those times, we would really appreciate if you would consider taking Tara with you.  She just needs to be dropped off and picked up at those times.  The location is easily accessible near I-229 and Louise.  This has been an overwhelming commitment for us at this point.  Of course, my surgery and Tanner's broken foot have just made it seem that much more difficult to see our way through, but I know that it is something that we need to do for Tara.  Just give us a call if you are interested in helping out anytime. Thanks!

Monday

Well, we didn't have the best news to start out our week.  Tanner was at the podiatrist at 8:00 this morning and he has a broken bone in his foot.  They believe that it was a stress fracture and we are guessing that it may have happened already during soccer last spring.  He has been having pain in his foot all this time (yes, I am a bad, bad mom) but on Friday when he ran it swelled up badly and he could only walk on the edge of his foot very carefully.  The bone was broken all the way through and Kyle & I guess that it may have completely broken while running.  Tough kid.  He ran 2.5 miles (I think) with a broken foot and he was in the top 25%.  Makes me wonder how he might have done otherwise. But Cross Country is out now for the rest of the year.  His foot is in a boot and he is not to put any weight on it for the next 6-8 weeks.  He has decided already that crutches are not cool!  He is handling it well, though.  We had a discussion about how this stinks, but how it could be worse.  It can always be worse.  We are especially thankful that the bone remained aligned so he didn't need to have surgery.  Although he had quite a bit of pain this weekend, now that it is stabilized he isn't experiencing much pain, for which we are thankful.

We trust that the Lord continues to be faithful.  It seems like a lot has happened but the Lord does continue to provide in a variety of ways. I continue working diligently on finding a neurologist or neurosurgeon within a days drive that is willing to adjust my shunt in cooperation with Johns Hopkins.  That would ease the challenge with my shunts to a certain extent and would be such a blessing. 

Saturday

What a blessing!  I had a really good head day yesterday and was able to watch the Cross Country meet that Tanner participated in!  It was a lot of fun and I was so thankful to be able to go.  Unfortunately, there is something wrong with Tanner's foot and after running it swelled up a lot and he is barely walking on it.  So I am not sure about the future of his CC meets, but we are hoping that he can continue!

Today hasn't been bad, but not nearly as good for my head.  I can see that I am gradually gaining strength.  I have a long way to go, but it is good to be able to do a little bit more as the days go by.  Yesterday was 4 weeks since the last surgery!

Thursday

Good news!  Tami heard from the doctor regarding her biopsy and they feel that they found the cancer early.  She will still need to have a hysterectomy but the doctor feels that it is contained there and she doesn't have to do it immediately.  Probably within the next 12-18 months I suppose and they will be watching her closely but it is a relief that it isn't urgently needing to be done next week.  We are so thankful!

I have begun the quest of finding a neurosurgeon that will work cooperatively with Johns Hopkins.  My new tactic has been to cross reference lists that I have run.  One is "area" codman shunt representatives as well as a second list of ns that are part of the hydrocephalus association.  Now, I don't have hydrocephalus but doctors that work with that have more of an expertise in shunts, per my ns in JH.  I had it narrowed down to four doctors within a 5 hour drive.  One has moved and one said no already so I am down to two.  They have asked for records to be sent and then they will decide if they will see me.  Please pray that one of them will say yes!  It would really help if I could drive a few hours for the 5 minute shunt adjustment rather than fly out to Baltimore each time.  I would continue working with JH and they would make the final decisions.  I have a hard time not being skeptical since I have had so many turn downs but I have to try again.

My head has been a worse again today. 

Tuesday

I feel like I have run a marathon!  So much is going on!  Monday I had the appointment with the surgeon as a follow up.  Overall, things are good.  The incision is healing nicely.  I may have a lopsided belly long term and I may not.  (I told the surgeon that if that was the biggest thing I had to be concerned about I would be tickled!)  Time will tell on that one.  The nausea and internal pain has improved, but is a bit concerning so I have another follow up appointment in a month to see how things are going.  If not much better they will do some tests to see if there are any problems.  I suspect that my body has just been through too much and it isn't healing as easily as the normal person would heal.  I suspect the surgeon felt the same way since we are waiting a month but it is nice that he is being cautious and making sure in a month that things are ok.

Finally at the end of the day I got a call from Johns Hopkins.  I have been assured that I will see the doctor on September 2 but the person scheduling has still not gotten around to contact me for scheduling the time.  My biggest concern is that the plan has been to decrease the flow of fluid a little more this time, but I still think that my pressure may be high and not low.  The scary thing is that I will probably have it adjusted Friday morning and I fly out Saturday morning, so we don't have a lot of time to find out if the adjustment is making things better or worse.  I live way to far away to have to turn around and go back for an adjustment when I get home!  We are praying for the doctor to have wisdom from the Lord to adjust things correctly.

The older kids had a half day of school today.  The younger two start tomorrow.  Between freshman orientation last night and then Tanner getting his school laptop tonight and the younger two having open house, it has been a busy few nights. It will be good to have quiet days now because I think I will be able to pick up a little better with some quiet but it is hard to believe that school and everything that comes with it has started again!

Sunday

It was a blessing again to worship corporately twice today.  This evening didn't go as well because I began having sharp pains in my abdomen.  That happens occasionally but thankfully it subsided so I was able to stay.  My head was better today than yesterday for which I was thankful.  I always wish that I could find some rhyme or reason to my head pain levels but there doesn't seem to be any consistency.

Saturday

Tami is feeling better today.  That is a relief!

My head is bothering me more again today.  I would describe it as more than a nuisance today.  It seems like it is growing a little more each day.  This morning I decided that it may actually be a high pressure headache rather than a low pressure, which is what the problem was this spring.  Some of the symptoms don't match what I had this spring while some do.  Why this would happen I just don't know.  It seems like the surgery put my system out of balance in some way but I don't know why. 

My eating seems to be improving although I get quite a bellyache often after eating.  I am sticking with chicken and fish for the most part for meats yet.  I haven't figured out what particularly is causing the belly pain although I know that there are somethings that I just can't tolerate. 

I see the general surgeon on Monday so I will be able to ask about this.  I am also curious about why my abdomen is healing with the left side bigger than the right side.  My stomach looks lopsided!  :)  If that was the biggest problem I had I would be tickled, but it does look rather funny to me.  It's a good thing I haven't ever been the bikini type of girl.  Between the incisions running up and down the length of my abdomen and now the lopsided thing going, I would be in big trouble! :)

Friday

Tami had a biopsy done yesterday so now we wait a week to find out the course of action for her.  She is hurting.  Please pray for her.  It is hard to see my baby sister in pain!

JH called last night.  I am going to get in to see the neurosurgeon in Baltimore two weeks from today. I had to go quickly because he will be out of the country for a month.  He wants to adjust the shunt a notch and see what happens.  They are unsure about my head hurting more as well.  It is hard to say, since I had been doing so well prior to the surgery.  So it may still be the after effects of surgery and it may just be that my pressure is off again.  I honestly am a little emotional about this.  My head was doing so well and although it is definitely tolerable it is just hard going back to this again.  However, it is all in perspective, I guess.  If I had gone down to this headache last winter I would have been tickled.  So I need to find contentment in this, but I just am not there yet. 

Wednesday

I woke up with my head hurting more again.  Not at all as bad as it was "before" but it is disturbing.  I called JH today and am waiting to see when I can get in.  The main neurosurgeon that I see is going to be gone the month of September so I'm not sure yet if I will be able to get in before he goes, see another doctor or wait until he returns.

Isaiah 55:12
For My thoughts are not your thoughts,
neither are your ways My ways,
declares the Lord.
For as the heavens are higher than the earth,
so are My ways higher than your ways
and My thoughts than your thoughts.

Tuesday

I am so tired!  Today I did some things that would be totally normal and simple for the typical person, but I'm not there yet.  The biggest thing was that we finished up our family pictures tonight.  Kyle's side of the family had our whole family pictures done while Melanie, Kyle's sister was visiting.  Unfortunately, that fell one week after my surgery and I just physically couldn't do the pictures.  The photographer graciously agreed to photoshop me into the pictures but I still needed to have my pictures taken at the right places so that I could be put in to the pictures.  We really needed to get that done before things started changing too much, since it was outside and because all the pictures were being held up by me.  We got it done, but it was very exhausting!

My incision isn't hurting so much anymore, but my insides are still hurting yet.  I am still having problems with eating foods as well which is getting rather frustrating.  Hopefully that starts going away soon!

Sunday

This has been a harder week and I can now explain why.  My youngest sister, Tami was diagnosed with cervical cancer.  It appears that it was caught early but further testing that will be done this week will tell more.  Please keep her and her family and all of us that love her in your prayers.

I was able to go to church today.  What a blessing!  It maybe was a bit of a stretch but well worth it.  I really miss going to church when I am not able so if I can go I don't miss!  Our sermon this evening was on Isaiah 58: 13-14 and it seems right to quote on the sabbath day.

If you turn back your foot from the Sabbath,
from doing your pleasure on my holy day,
and call the Sabbath a delight and the holy day of the Lord honorable;
if you honor it, not going your own ways,
or seeking your own pleasure, or talking idly;
then you shall take delight in the Lord,
and I will make you ride on the heights of the earth;
I will feed you with the heritage of Jacob your father,
for the mouth of the Lord has spoken.

Friday

I continue to make progress.  It may be baby steps, but it comforting to go in the right direction again.  It is a quiet day today with Riley and Tara at Karleen's house and Tanner working during the day.  I kept Kylie busy, though, and had her make spaghetti sauce out of our accumulating tomato stash.  She did a great job and now there are a few meals in the freezer.  She wasn't so impressed with the feel of pealing tomatoes--too slimy.  Oh, well.  She has grown up so much and been a great help to me.  It is so hard to believe that we will have two kids in high school in a couple weeks!

This setback has been particularly difficult for one of my kids.  It is hard to see mom very sick over and over and there is a great fear of losing me.  Although my health problems have been difficult for me I think in ways my family has suffered more than I have.  The "worst" thing that can happen is my death but that is actually a great comfort to me and a joy to consider where for my family it would be a loss of mom and wife.  I am on the mend now, but this setback has brought forward a lot of the memories of some tough times that weren't more then a few months back and more.  I would like to ask that you keep my family in your prayers.

Thursday

Yesterday was not a whole lot better although by the evening I felt like I was picking up a little.  I just overall have been feeling unwell and not sure why.  It probably helped yesterday afternoon when I took a Zofran, a great anti-nausea medication.   So perhaps that is why I picked up.  I'm not sure.

Today I am feeling better.  So hopefully I am not premature in appreciating feeling better.  My pain control is much, much better as well.  I am occasionally taking ibuprophen but that is fairly limited.  So that is good progress.  I am still able to do very little.  I am incredibly weak both in simple activities and endurance.  I am walking around as much as I can, but that too is fairly limited at this point.

It is still rather hard for me to believe that I had another surgery!  It is hard in that I was making such good progress and resuming a few of life's normal activities and now I am back to doing nearly nothing again.  I did drive for the first time yesterday a few blocks and as long as it is short I am feeling comfortable doing that.  Definitely better than when I had the headaches and couldn't drive.

Today is the day I was supposed to be at Johns Hopkins for the next shunt adjustment.  I wish that I could have gotten that done but hopefully we will get that done in the next month or two.  My head has not been as great as it was before the surgery.  Nothing like it was before JH, but just not feeling as well as it had.  That is concerning to me because I would like to know why.  I guess the sooner that I can get to JH, the better so that hopefully we can get on top of that before it would progress.

Tuesday

My follow up doctor appointment yesterday went well.  The staples are out, and it feels good to have the extra metal out of my belly!  I did very well with the traveling and being away, too.

Today hasn't been as good.  Things just don't seem to be working as well and I am not feeling as well.  Hopefully this to shall pass.  I am fearful of landing up in the hospital again, but logically I don't think that is all that likely.  We'll see how the rest of the day goes.

Sabbath

Today has been a little bit better again.  It seems that very slowly I am making movement in the right direction.  The nausea seems to have improved quite a bit.  I have continued with the prescription pain meds much of the time, but rotate them with ibuprophen.  I can tell that the pain is better today. 

Today we also celebrated the long delayed graduation of Kylie from 8th grade and the best part is that we were able to also celebrate Heather's 8th graduation, my niece on Kyle's side, as well.  The irony is that when we cancelled it last spring I thought I would be doing so much better and it would be easier.  Well, obviously my head may be better but my body sure isn't.  Both sides of the family were wonderful, though, and got everything together.  We had noon meal in the park and although I didn't do anything or participate very much, it was a blessing to be there. 

Another milestone today is that I ate a bit more!  I had some fruit at the graduation meal.  Tonight a dear lady brought our family a meal of chicken spaghetti and I was able to eat a little bit of it.  It is exciting to be able to eat some "regular" food, so I know I am on the right track there.

I am going to end with portions of Psalm 61.  This setback has been a challenge to me.  It is hard to understand the way the Lord has answered so many prayers in this again.  I trust that the Lord has a plan for me and my family but, as with so many others, the way is not easy.

Psalm 61
Hear my cry, O God, listen to my prayer;
from the end of the earth I call to you when my heart is faint.
Lead me to the rock that is higher than I, for you have been my refuge,
a strong tower against the enemy.
Let me dwell in your tent forever!
Let me take refuge under the shelter of your wings!
For you, O God, have heard my vows;
You have given me the heritage of those who fear your name..
So I will ever sing praises to your name,
as I perform my vows day after day.

Saturday

Yesterday I turned a small corner.  I actually ate a couple pieces of toast and was up in my chair more.  I walked outside twice.  Not huge, but improvements.  It seems as if the pain control and the nausea are a little more under control as well.  I think we have come to the conclusion that I really should have stayed in the hospital another day or two.  I wasn't ready to be home yet.

Yesterday was also a weepy day.  It so so good to hear from people!  Fun to hear about their plans and just things happening in their lives.  Then I would hang up and start longing for those things that I call normal.  Running after kids, watching activities, going to work, getting groceries, going for school supplies.  Not a big deal, right?  Something that in ordinary life we just don't appreciate.  Over the last years, though, that is normal to me.  Not the big things.  Just the little, ordinary occurrences in life that typically you don't think about.  Maybe even dread.  I was starting to do those things the last few weeks to a certain extent.  I could get a few groceries on my own and just needed help if the list was a little longer.  But some freedom in that. I actually took Kylie to a doctor's appointment in Sioux City by myself--the first time in I drove in a city for probably a few years!  Then we went to one store.  Not a big deal to most, but huge to us because we hadn't done that together since she was a little girl. We were able to get her some school clothes and it was so "normal."   The younger kids just asked me last night when we would get school clothes for them and now that seems out of reach again. 

I long for the bigger things, of course, but even more for the small things.  Just the ordinary, normal things that people do without a thought. 

Friday

Another difficult day yesterday.  I ended up spending most of the day in bed and slept off and on.  I have continued to struggle with the pain control and nausea, but equally big problems right now.  I continue to hope each day that I will turn a corner.  It did seem as if yesterday evening was better than the day.

During the night I took an anti-nausea pill and only took a different pain med at 9:30 last night.  This morning I am hurting, but holding off on the primary pain med because the nausea is much better.  I just took some ibuprophen to see if that would take enough of the edge away.

We have been able to make arrangements so far for the younger kids to be away during the day.  They will be gone this morning again and I think Kyle will take the afternoon off and go somewhere with them. 

Poor Kyle.  I asked him if I was any better than a newborn!  Last night wasn't bad but the night before I guess he was up doing something for me three times (getting pain & nausea meds).  I don't remember any of it, but I am blessed to have such a faithful husband!  I think he should qualify for some kind of a reward! 

Thursday

Yesterday was just a rough day overall.  Hopefully today goes a little better.  I was quite nauseated in the morning.  It seemed to settle down for a while, but in the evening it kicked in again.  I took another zofran when I felt it coming but I did end up throwing up last night.  Ouch--that hurts with this big incision on my abdomen!  We were starting to think that I would be going back in to the hospital but this morning seems to be going a little better.  I started right away with the anti-nausea medication and a while later ate a piece of toast.  So we will see what the day brings.  I really don't want to go back to the hospital, but i do understand that sometimes it is the best place to be if I am struggling to manage at home. 

I am having some issues with pain control as well. In the hospital I was on a pain pump and iv toradol.  I have had my limit of the toradol so we are trying to figure out what to layer to be the most effective without it upsetting my stomach.  That is a delicate dance!

Wednesday

Please pray that things pick up.  I am not feeling good with nausea causing problems.  I took Zofran, an anti-nausea med, at 8:00 but it doesn't seem to be helping.  That makes me a little nervous!  Had a good night of sleep, though.  :)

I'm home

I returned home around 3:00 today.  Yeah!  I am tired and very weak.  Eating is a challenge again.  Just finding something that I think I can take a few bites of, but I know that it will improve each day.  I walk around as much as I can, but it seems to be at a pretty slow pace and not very far.  I made it down to my garden, though, which was fun.  No picking vegies, though.  My kids will have to work on that for me. 

Release day!

I really have to think about what day it is because so much has happened!  A week ago today is when I woke up with the severe pain in my abdomen.

After a short night of sleep and we will just say a lot of intensive work on getting my bowels functioning, today is looking like a pretty good day!  I am exhausted but happy to know that it looks like I will be going home today!  I was moved to a soft diet yesterday noon of pudding and toast, and the same for supper.  This morning he said that if I could eat breakfast, take a shower and tolerate oral pain meds, I can go home if I like this afternoon!  If not, tomorrow.  I am not one to turn down the opportunity to go home, so unless things turn dramatically I will be heading home later today.  What a blessing!  :) I often write that Psalm 121 is one of my favorites, and last night I was reading it again as I was feeling a bit miserable and what a comfort that the Lord promises to be with me through all of this!  I have accomplished the three requirements and think I will take a nap now to recover from the effort!

The dressings came off of the incision this morning.  It is looking a little better than Sunday I think.  It is a little longer than I initially thought.  The nurse said the incision is 8 inches long, so maybe four inches short of the last time (2 years ago with the infection).  It is full of staples and it looks like I took several punches to that area.  It is very black and blue and quite swollen.  The staples come out the beginning of next week.  I know that I won't be doing much the next few weeks.  I am learning, slowly but surely, to not be too proud to accept help from those who offer.  I am thankful for the kindness of others!

Finally, my room has been so bright and cheerful this time!  I received flowers from the SF group and three other wonderful, dear friends and family.  It is amazing what cheer and joy the beauty and scent of flowers can make in a quiet hospital room.  Thank you so, so much!  

I really do have so much to be thankful for!

Monday

It looks like a beautiful day outside, although everyone says that it is miserably hot.   I enjoy seeing the sunshine!

I debated about sending the computer home yesterday because I really didn't want to be writing discouraging things and have my own little pity party.  He convinced me to keep it,though, and I really appreciate the notes people have written.  For whatever reason, I can write on this and receive email but my email isn't sending.  So I won't be able to respond to email unless I figure out why things aren't working right.

Yesterday I was blessed to have the Kramers come to visit, Kyle and the kids and then Karleen came for quite a while in the evening.  It turned out to be a pleasant day.

The incision on my abdomen is covered but I saw it for the first time yesterday and it is fairly long.  It starts in my low abdomen and comes up and around my belly button.  I would ballpark that it is about 6 inches long.  Today I tried to hold off of taking one of the two pain medications.  One I get every 8 hours and the second by pain button.  I had hoped not to take the 8 hour med this morning, but finally broke down a short time ago.  The pain is still just too intense to skip it yet.  I am on a clear liquid diet so I am getting to try a variety of jello flavors.

I don't know yet when I will be released from the hospital.  I am trying to find contentment in where I am and that means finding contentment in a hospital room.  I am working on that!  I am sad that Melanie and family arrived from New Jersey and I am in the hospital.  Two years ago I was in their full stay here so I am hoping this time I can be released before they go home.  My activity is going to be quite limited for quite a while, regardless of where I reside and I know that they will all have fun, particularly the kids so hopefully this won't affect them so much.

I am hoping that when I read this post later it will all make sense.  I'm not always sure I am completely logical when I have a lot of pain medication in my system!  :)