Tues. Night

The older I get the more I realize how much I don't know and understand things about this world in which we live.  It makes me long for heaven in which there will be no pain, suffering, and sin. It is hard for my mind to comprehend that.  Cindy had a better day again today.  Some of the cultures are coming back and the results are negative for infection.  They are going to treat her as if she does have infection due to her symptoms last week.  We are both thankful that she is in Iowa this time around instead of Maryland.  The N.S. here is still not convinced that she needs a shunt.  This morning they decided to clamp off the shunt tubing from draining again and see what happens.  Maybe just maybe they will be able to remove the shunt or it will convince the N.S. here that she really does need one.  We will know more tomorrow about that and the remaining cultures.

Monday Evening

I am kinda a believer in the saying "no news is good news".  English and writing was not my thing in school either.  I told my wife that maybe she should write a book about the last 5 yrs with all her time she spends in the  hospitals around the country instead of reading 100's of books.  Anyway, hopefully in the next day or two Cindy will have the laptop again and take over her blog writing.  Today for the most part was a pretty good day.  The main 3 items: stomach pain, head pain and nausea - all three kinda come and go thru the day - fair to partly cloudy.  She's on medication for the stomach pain and nausea.  Her head was not as good today.  Hopefully tomorrow we will get answers on the stomach culture results and see how much antibiotics she will need.  They will not touch the shunt now until infection is treated first which we are thinking the end of the week if we are lucky but over the past 5 years lady luck has not come our way.  So, hopefully next week they will get the shunt taken care of.  We are trying to get the Dr here to talk with the Dr in Johns Hopkins to decide what the best plan of attack will be when it comes to shunt time.  We might need to make some heavy decisions again at that time.       

Sunday Morning

Cindy's surgery went well.  They did lap surgery - so the incision is alot smaller than the last infection surgery when they opened her from one end to the other.  They took the tubing out and they took some cultures of the stomach area.  The culture will be tested and will take 2 to 3 days to find out what kind or type of infection but they started her on antibiotics after the surgery.  She will be in ICU for the day.  She didn't get to much rest through the night so hopefully today will be a restful day.

Saturday Night Late

We got Cindy admitted into hospital around 5pm.  They were planning on giving antibiotics through the night and make some more decisions Sunday morning.  Around 9:30 tonight her white blood cell count spiked and her temp spiked and her pain increased.  At 10:20 they decided to go into surgery.  They are going to pull out the shunt tubing out of her stomach and see what else they can find.

Saturday yet

Just call from Johns Hopkins that I need to get checked into a hospital asap here so I will be going to Sioux City.  Just trying to pull a few things together and figuring out things and we will be heading out.  Please pray that things go well!

Saturday

I am sorry I haven't posted more but I have been waiting for the doctor to call.  He hasn't called yet so I thought I would give an update with what we have been told so far and will post later when I have more answers.

As I wrote, I do not have a bowel obstruction.  When I didn't hear from a doctor by 5:00 I thought that perhaps they were doubting me.  That was not the case.  At about 7:00 the general surgeon called, asked me a few questions and then pointedly told me that I am not well and he knows something is wrong.  After going through some things and telling me that the blood test earlier showed one result that indicates abdominal issues normal shows a 2 and mine was 50-60.  He talked about admitting me this morning for exploratory surgery but is really worried about the shunts.  His words were, "I am very concerned."

He believes that I have an infection again, similar to the infection that caused my 5 week hospital stay 2.5 years ago.  After a lot of going back and forth and good advice from a doctor friend, we ended up arranging for my neurosurgeon in Baltimore to talk to the general surgeon here.  The general surgeon called about 10:00 last night and said that my neurosurgeon was going to study my file this morning and make a final decision as to whether I will need additional tests, be admitted in SC or get to Baltimore.  We are waiting for that call.  Of course, if it is infection there is a great deal of urgency because the fear is always that the infection will travel into my brain. 

The details are overwhelming so we haven't made any plans or arrangements.  My abdomen is hurting but still more tolerable than my head.  For the most part I am just taking ibuprophen with an occasional pain pill when needed.  Traveling could be very difficult if that is necessary and I'm not even sure how that will happen.  One thing at a time.

Right now we are in shock, I think, and Kyle and the kids are just going about their normal business.  We know the Lord is faithful and that His plan will be carried out in our lives.  It is overwhelming for us, but comforting to know that He has it in His hand.

Friday continued

We have additional information that makes my situation much more complicated.  Please pray for us as we are making big decisions and dealing with uncertaintly.  I will post more in the morning when I learn more.

Friday

So today was a bit frustrating, mixed with some good and bad.  The test result that we were waiting for this morning and maybe were hoping would be positive for a simpler answer and treatment came back negative.  I then had the test this afternoon.  Although I haven't talked to the doctor, it doesn't seem that there is a blockage.  That is very good news because the last thing I need is another surgery.  The not so great part is that I still don't have an answer.

There are days it would be really nice just to crawl into a dark hole and disappear until the Lord returns!  This is not nearly as serious as my head painwise, but I would just like to feel good for a while!  I am just going to wait a few days and pray that it just goes away.

Thursday

Unfortunately I don't have any news yet.  I talked to the doctor a little bit ago and the results of the tests that are in are normal except that one indicated irritation of the intestines and a few other smaller abnormalities.  One test that seems like a possibility will be in tomorrow morning.  If that test is negative, I am scheduled to go in to Mercy hospital for a test to check further for bowel obstruction.

The pain seems to get a little stronger each day but I am taking a little more pain medication and that is helping.  I am thankful for the answer to prayer that I should be able to go tonight to watch the Daddy/Daughter drill team performance.  With the pain at this level it isn't going to be so easy, but I am pretty determined to be there.  :)  This pain is still much more tolerable than my head pain can be.  The doctor suggested admitting me today, but I told him that I wasn't going to be admitted unless I absolutely had to be there and had no choice.  The thought of another hospital stay just makes me ill! 

I don't have my Bible sitting here but I am thinking about the verse that goes something like this, "They that wait upon the Lord shall renew their strength.  They shall mount up with wings as eagles.  They shall run and not be weary, they shall walk and not faint."  The Lord has been so faithful!  He continues to carry us through these difficult days no matter what the result of these tests.  This has been rough again, but I really do have many things to be thankful for, including being able to go to the drill team performance tonight!  :)

Wednesday

We are just a little bit more optimistic after this morning.  We chose to go to the general surgeon today since that is who would do the surgery if necessary.  He didn't rule out the bowel obstruction but is checking a variety of other things out as well through some tests.  We will get results either today or tomorrow afternoon.

The pain continues to be tolerable with medication and can become rather strong if I don't take anything.  I continue on a liquid to soft diet, which I started Monday at the doctors recommendation.  The surgeon asked that I continue on that until a decision is made.  So yogurt, pudding and ice cream have been my primary source of nourishment.  The ironic thing is that I have more pain after eating each time, but it hasn't made a difference moving to the "soft" diet.  I'm not nauseated so watching others eat is challenging my self control, but I have been faithfully sticking to my diet.  :)

The hour trip this morning was rather difficult because I didn't want to take anything until after he saw me.  However, my abdominal pain is still much more tolerable than my head pain.  It would be nice to just skip both, but so it goes. . .

Monday

The abdominal pain has continued, so I finally went in to the doctor today.  I honestly am concerned.  At this point there are no answers, but a suspected bowel obstruction in my lower abdomen.  If the pain hasn't subsided by Wednesday morning, I need to go in for a ct scan.  Of course, if the pain becomes more intense or I start vomiting I will have to go in right away.

Ironically, I have been thinking the last few days about the last time this happened.  It was around 4-5 weeks after my shunt was adjusted and decreased fluid being drained into my abdomen.  Adhesion's developed and caused the problem last time.  It has been about 4.5 weeks since my shunt was adjusted to decrease fluid and this is happening.  Not to reassuring that this might be a repeat of this summer.

However, we are just taking things as they come.  Ibuprofen is still handling the pain pretty effectively so I could watch the repeat of the co-ed drill team performance.  My goal at minimum is to make it through Thursday evening so that I can watch the daddy-daughter drill team performance.  It would be very hard to miss that!

Please pray that this will resolve itself and that it is just a very long lasting virus!  The Lord is sovereign and has a perfect plan and I am working hard on just trusting Him to carry me through whatever His plan is.  One day, one moment at a time.

Saturday

My poor husband has to put up with a lot, living with a wife like me!  :)  No day is alike and we don't like that all that well.  All of that to say that I am not doing quite as well yet.  There are two relatively small problems.

First, my head is okay but not as good as it was.  Definitely doable, but I really enjoyed having it better than this.  I just happened to see a weather forecast (Kyle normally keeps track of this and I don't) and it is supposed to calm down next week so I am hoping that helps.

Second, I am having some abdominal pain again.  It started on Wednesday and seems to progressively get a bit worse each day.  Last night I really wanted to watch the drill team because they did three performances in the Homecoming game and Tanner performed with Kylie in the co-ed routine.  What a talented group of kids!  Since it was getting worse that day I took 800 mg of ibuprofen and that made it much better so I could enjoy the routines.  Today the pain has continued and finally this evening I took more ibuprofen.  So we are really hoping that it just runs its course and tomorrow is better.  Tanner is playing his cello tonight in a community concert tonight but I will be staying home tonight.  It is reassuring that ibuprofen is helping quite a bit so hopefully this is just viral and we can move along without another hospital visit!

Thursday

It seems that when I am doing better, I just don't have as much to write.  What a blessing to be at that point again!  I continue to be thankful for each good day that I am given.

Today and even last night I started feeling my headache a little bit more.  It is still very tolerable, but more bothersome.  This morning I was going through a mental checklist to see if I could figure out why it hurt more.  I decided that it may be due to the huge snowstorm that is supposed to hit tonight.  When I returned from work I check the barometric pressure and sure enough, it is changing dramatically.  So perhaps that will continue to be an issue, but it hasn't been bothersome these last weeks until now, so that is good.

Although I can see that my activity level has improved, I am still pretty limited and am careful about not overdoing it to much.  I am working in the mornings and then go home to rest for the afternoon.  Life is a little chaotic with two teens and two grade schoolers in the evening, but I am handling it okay.  Last night I even went to Bible study--such a blessing!  The timeliness of the study on Job for me is just wonderful. 

I have had some struggles and my health is not great, but I have so much to be thankful for!  How easy it is to focus on the negatives in our lives rather than concentrating on how many ways we have been blessed.

Sabbath

A day of blessing and worship today.  What a gift it is to be able to corporately worship twice on the Lord's Day again!

I continue doing well for me.  It has been three weeks and a couple days since my last surgery, and I really am amazed that I am doing as well as I am!  I can't make it through a full day yet, and I think it will be a while before I will be able to go all day.  But I am happy with how things are going to this point.

Saturday evening we had the delight of spending an evening with friends at their house.  It has been so very long since we have been able to do something like that, so it was a very special treat.  We are so thankful to the Lord for bringing me this far and pray for many more of these days ahead.

Please continue praying for our children as these ups and downs and the time away with hospital stays and surgeries again is hard for them.  Even though I am doing a lot better right now, they know so well how quickly that can change.  The fear that the uncertainties has created is difficult for me but often even harder for my family.  We continue to remind them that God's plan is best for our family even if we don't like it so well.  They understand that as well as any of us can but the fear is not erased.

Wednesday

I really have a lot to be thankful for!  I continue to concentrate on living one day at a time and appreciating each good day that I am given.  What a joy it is to be feeling better!

A rundown on how things are going in maybe in order.  My head is doing remarkably well!  I still have a headache all the time, but it is mild enough that I can function pretty well.  The sensitivities are improved, but I have a long ways to go in that area.  I have been able to tolerate some things better than I have for a long time, though.  Thankfully I have gone to two of Kylie's drill team events in a gym.  The first time went a little easier because it wasn't as busy or full so I was in the gym for maybe 10-15 minutes.  It was so great to do something relatively normal if only for a short time!  The second was a little louder and busier so I just sat in for the performance, but if either of these had occurred prior to the recent surgery I don't think I could have tolerated it. 

I started a medication 2 weeks ago to help decrease the irritation of the covering of my brain.  I believe that they think this irritation may be at least partially responsible for the problems with sensitivies.  Although it has improved I don't think it is due to the medications yet.  However, they felt that this would take months to improve, so I am not giving up on that.

Finally, the incision by my collarbone is improving.  It has been very irritated by clothing touching it so I usually don't wear anything over it or I cover it with gauze and tape.  For the first time today I wore a loose fitting, soft shirt and it worked!  I still have some pain around the incision where it seems that it just hurts more if I do much with my right arm, etc.  But definitely making progress there.

Overall, things are going well and I am incredibly thankful!

Saturday

A friend asked earlier to explain to the Christian community how we can provide comfort to those that are chronically ill.  I have thought a lot about that and have struggled with what to write.  I don't want to appear to have all of the answers, because I don't.  I don't want to have people feel that I am pointing fingers at any particular person, because I'm not.  So as I have prayed about this and then yesterday as I was continuing a study on Job, a section focused on what a good comforter should offer struck me.  So if you are interested in seeking God's words on comforting His people, take a look at the following verses.

I Samuel 23:15-16
Job 2:11-13
Job 16:5
Ephesians 4:29, 32
II Corinthians 1:3-4
I Peter 3:15

These verses really answer the questions on giving comfort.

I recognize that my situation is a bit unique because it isn't always easy to visit with someone with a headache, particularly when it is bad.  Since I am doing better, I feel like perhaps I can mention a few things that would mean a lot to me, and I suspect would mean a lot to any person that is struggling with an illness, injury or just having a hard time for whatever reason. 

I enjoy getting cards, particularly if there is a note in it that let's me know that the person is thinking of me.  I have appreciated notes on my blog. (I have just heard that there were some challenges with commenting on the blog so I encourage you to try it with the instructions I've added to the sidebar and just put "test" in the comment if you like to see if the instructions help--I can erase the tests.)  I love to receive emails, and my email address is in my profile.  I think it is important to mention that you don't need to have anything remarkable to say!  I received a kind email from a person while in the hospital this last time and I had Kyle read it to me several times just because it was so comforting to know that a person actually remembered that I was gone and that I was missed.  The same goes for the notes in my blog--although I couldn't read them in the hospital my mom would go to the room and read them to me on the phone so that I would know that I wasn't forgotten.  A visit means a lot as well.  It doesn't have to be long, but just sit down and talk to me about things that are going on in ordinary life is refreshing.  Perhaps just a quick call before coming might be a good idea.

The important thing that I want to express is that it doesn't really matter what you have to say and doesn't take a lot of effort.  It is showing that you care and that I am not forgotten in the hustle and bustle of life that means a lot to me!  Sometimes people are afraid to call, but if I can't talk I just won't answer but later listening to a quick message saying that you are thinking about me can provide a great deal of comfort as well.  Although this has been going on a long time, I can't say that it gets easier.  Sometimes it gets harder because an end doesn't seem to be in sight.  Please don't give up on me!

Wednesday

It is hard to believe that a new year has begun.  I am praying that this is the year that the Lord returns!

Now that school has started, I want to give a big thank you to OCCS 6th grade class for their continued prayers, beautiful card and gift!  What a blessing it is to know that children are regularly praying for me and to see that they care.  Thank you!!

I am doing pretty well!  My headache is still there, but at a more tolerable level.  I have been able to do some things, and although I am very tired I am not miserable at the end or later which is a great improvement.  On Monday, Kyle and I took the kids to SF to go shopping as a family.  We didn't intend to buy anything, but just to look around and check things out.  I looked at Kyle at one point and asked him when the last time was that we went as a family shopping and he quickly replied, "over five years ago!"  I don't remember doing something like that for years.  Not a big deal to most, and many would say that they wouldn't want to do that but it is quite an accomplishment for our family and time together that we enjoyed.  I did need my wheelchair because my strength is not restored but it was still wonderful.

One of the things that is exciting to me is that I feel like I will be able to get strong again.  Before I always had what felt like a barrier to restoring strength because any exertion would cause my head to get much worse and quickly.  Now I get tired but it is closer to a normal tired or exhaustion that gives me hope that I will be able to move forward.

making a comment

I have heard that a few have tried to comment on my blog and haven't been able to.  If you don't have a blog, do the following:

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