I am not feeling very good and not sure why. Last night it started and today it hasn't improved. I can't say I have a headache but when I try to walk through the house for exercise I get sharp stabs in the right side of my head--the same place I have mentioned before. And I just don't feel good. The nausea has increased as well. Hopefully it will pass. I have to admit a little sense of panic but am trying very hard to remind myself that this is probably nothing.
I am concerned about my youngest sister, Tami and her husband as well. They live in Fargo where they are having all the problems with the floods. She is expecting a baby due May 23, and besides their own living concerns she and her husband both work as adjusters and are extra busy with claims coming in. My other sisters and I have had problems with pregnancy and between the 3 of us have had 10 pregnancies--none of which have made it to the due date. This is Tami's first but we are praying that all goes well for her!
Monday, March 30, 2009
Sunday, March 29, 2009
Sabbath
What a blessing the Sabbath day is. I long to be able to attend church again and am really hoping that by next Sunday I will be able to go at least once. I listen to sermons at home but it just isn't the same.
Kyle took me to Walmart again on Saturday and wheeled me around in a wheelchair. It is so nice to get out! I am walking once or twice a day around the house or a house or two down the street and back, which is wonderful in the nice weather. I love spring, seeing things beginning to spring to life again.
For those that are interested in the disease that I have, I am including a link. It is has multiple names but most commonly called Pseudotumor Cerebri or Intracranial Hypertension. http://www.ihrfoundation.org/
We continue to debate about what to do with my hair. I have had a few suggestions--thank you! :) I am pretty sure I will either cut it to the length of the right side recent surgery or shave it to the length of the most recent. The negative about leaving it the way it is is that it looks funny. I have about a 1 inch stripe down the middle of my head between where the hair was shaved on both sides. My mom keeps looking at it and trying to figure out what is best. We will wait until the swelling and bruising is gone from this most recent surgery and that will allow the hair there to come in a little more. The hair has become a very small issue to me compared to everything else and I think the kids are getting pretty used to it looking this way--they don't even say anything about it anymore and don't care what I do. But, I will need to do something. . .
Kyle took me to Walmart again on Saturday and wheeled me around in a wheelchair. It is so nice to get out! I am walking once or twice a day around the house or a house or two down the street and back, which is wonderful in the nice weather. I love spring, seeing things beginning to spring to life again.
For those that are interested in the disease that I have, I am including a link. It is has multiple names but most commonly called Pseudotumor Cerebri or Intracranial Hypertension. http://www.ihrfoundation.org/
We continue to debate about what to do with my hair. I have had a few suggestions--thank you! :) I am pretty sure I will either cut it to the length of the right side recent surgery or shave it to the length of the most recent. The negative about leaving it the way it is is that it looks funny. I have about a 1 inch stripe down the middle of my head between where the hair was shaved on both sides. My mom keeps looking at it and trying to figure out what is best. We will wait until the swelling and bruising is gone from this most recent surgery and that will allow the hair there to come in a little more. The hair has become a very small issue to me compared to everything else and I think the kids are getting pretty used to it looking this way--they don't even say anything about it anymore and don't care what I do. But, I will need to do something. . .
Saturday, March 28, 2009
Saturday
I went to part of our church talent show last night. It was so nice to get out and see a few people, even though I wasn't able to stay till the end and visit. :)
The nausea is very well under control--I can't say it is gone but much better. I am so thankful to be feeling better! The challenges for now? I still have pain in the incision sites. The top of my head and left side including the top half of my ear are still numb but the area in the back that is losing the numbness is pretty tender--so numb may be a blessing. My mom says the left side of my head looks green from the bruising. It is still a little swelled so the tube that you can normally see right under my skin is still not very visible.
I am having a lot of pain now and then in my lower abdomen again. That hadn't gone away before but was getting better and now it seems to be much stronger and much more frequent again. I am still having the ringing in my ears but there are times that it becomes pretty quiet and times that it seems to get louder. The ringing is probably the most concerning issue to me even though it is not a big deal if that is all I have to deal with. It typically hasn't been a good sign in the past.
Finally, another concerning thing that has been going on since my previous surgery in February is that I can get deep throbbing pains in the right side of my head. It feels like the tube on that side is almost too deep and is hitting something sometimes. Medically it doesn't make a lot of sense, I think, but it is there sometimes and can be very painful. I had hoped the doctor could adjust that a little bit but it would require opening all that up again on the right side. He also really wanted to not touch the right side at all so that we knew exactly what the left side shunt would be doing. So I continue to hope that it will resolve itself.
So I have a laundry list of concerns. We are working very hard at not focusing on those, though, and just appreciating and enjoying the good days we are having. Each good day is such a blessing!
The nausea is very well under control--I can't say it is gone but much better. I am so thankful to be feeling better! The challenges for now? I still have pain in the incision sites. The top of my head and left side including the top half of my ear are still numb but the area in the back that is losing the numbness is pretty tender--so numb may be a blessing. My mom says the left side of my head looks green from the bruising. It is still a little swelled so the tube that you can normally see right under my skin is still not very visible.
I am having a lot of pain now and then in my lower abdomen again. That hadn't gone away before but was getting better and now it seems to be much stronger and much more frequent again. I am still having the ringing in my ears but there are times that it becomes pretty quiet and times that it seems to get louder. The ringing is probably the most concerning issue to me even though it is not a big deal if that is all I have to deal with. It typically hasn't been a good sign in the past.
Finally, another concerning thing that has been going on since my previous surgery in February is that I can get deep throbbing pains in the right side of my head. It feels like the tube on that side is almost too deep and is hitting something sometimes. Medically it doesn't make a lot of sense, I think, but it is there sometimes and can be very painful. I had hoped the doctor could adjust that a little bit but it would require opening all that up again on the right side. He also really wanted to not touch the right side at all so that we knew exactly what the left side shunt would be doing. So I continue to hope that it will resolve itself.
So I have a laundry list of concerns. We are working very hard at not focusing on those, though, and just appreciating and enjoying the good days we are having. Each good day is such a blessing!
Friday, March 27, 2009
Better day
I am thankful to say that today has been a better day. I can't say that the pain in my stomach or head is much better but it is tolerable. I am taking only 4 pain pills a day--not to bad I think. The nausea is much better today and I haven't needed to take anti-nausea meds today--a big improvement! But best of all, I just feel better. I don't feel so exhausted and yuck. I still have a long ways to go--but I feel like I have just passed another little hurdle in the journey.
Thursday, March 26, 2009
Less metal in my body :)
I had all the staples--about 25 of them--and stitches removed today. Everything seems to be healing pretty well. I have sterie (no idea how to spell!) strips on my stomach incision now, just to be on the safe side. The incision is about the length of my little finger. Riley will be especially thankful that the staples are gone. They really bother him.
I am still headache free and extraordinarily weak. It is hard to know the balance of resting and trying to build strength, but the majority of the time I am doing the first yet. It is so wonderful to be headache free. I have to admit that I am more fearful of a recurrence, though. My history hasn't been so great. Most of the time I concentrate on being thankful for being headache free and am trying to appreciate these moments and days. I am so praying that it lasts forever, or at least many years. I think I mentioned before that the doctor felt that if I can get 6 months without problems that he feels that I should be ok indefinitely. Indefinitely sure sounds good!
I am reading a book about the sovereignty of God and trusting Him. I am happy to say that I am not to tired to read now. :) I will write about that more later.
I am still headache free and extraordinarily weak. It is hard to know the balance of resting and trying to build strength, but the majority of the time I am doing the first yet. It is so wonderful to be headache free. I have to admit that I am more fearful of a recurrence, though. My history hasn't been so great. Most of the time I concentrate on being thankful for being headache free and am trying to appreciate these moments and days. I am so praying that it lasts forever, or at least many years. I think I mentioned before that the doctor felt that if I can get 6 months without problems that he feels that I should be ok indefinitely. Indefinitely sure sounds good!
I am reading a book about the sovereignty of God and trusting Him. I am happy to say that I am not to tired to read now. :) I will write about that more later.
Wednesday, March 25, 2009
Wow!
I was overwhelmed last night. Kyle went through the mail and we received several get well cards and a special envelope from a Bible class at Unity Christian high school. To say that receiving notes of encouragement from a group of teenagers was moving is a huge understatement. Wow! We were both moved to tears and overwhelmed that even a group of teens have been praying for us. To the Bible class at Unity--thank you so much! It is humbling to know that you have been praying for us and so uplifting to see your faith in action.
Today I also received a bunch of stunning roses and a cheerful balloon bouquet from Kyle's family. What a lift again. God has been so good to us through this journey through our families and friends.
I am very tired today but if you talked to me I think you would notice right away that I am sounding better. There is such a huge difference for me between pain and a headache. Although I am feeling much more clear-headed, it will probably take a while to get my whole brain back. :) The doctor thought it would take a few weeks before my brain had settled in and adjusted to the changes again.
We so appreciate your prayers and words of encouragement. What a gift we have been given through all of you!
Today I also received a bunch of stunning roses and a cheerful balloon bouquet from Kyle's family. What a lift again. God has been so good to us through this journey through our families and friends.
I am very tired today but if you talked to me I think you would notice right away that I am sounding better. There is such a huge difference for me between pain and a headache. Although I am feeling much more clear-headed, it will probably take a while to get my whole brain back. :) The doctor thought it would take a few weeks before my brain had settled in and adjusted to the changes again.
We so appreciate your prayers and words of encouragement. What a gift we have been given through all of you!
Tuesday, March 24, 2009
Homeward Bound!!
I just spoke with Cindy and they are on their way home! She is feeling better today than she has so far since surgery, her voice was normal again this morning, which for her is a a good sign, it tells us she is truly feeling better!
The Doctor said the nausea that she has been dealing with since the surgery could be from overdraining, but didn't want to adjust the shunt up yet thinking her body will adjust to that. That is still a better problem to have than too much pressure. He thinks if this shunt will go well for 3 to 6 months, it should be good possibly indefinately. She has talked about a good portion of her scalp being numb, the Dr said they had to put an incision in her neck this time to get the tube down to her stomach, and they could have cut through some nerves in her neck, but that feeling should eventually come back. Cindy has said her neck was very sore, black and blue and swollen this time which she did not have last time.
As parents we are rejoicing that there is a light again showing through this long dark time in our daughter's life. We know so many people have been praying for Cindy, Kyle and their family, and we would also like to say how much we have appreciated all your prayers for them. We know that it was only through God that Cindy was lead to Dr. Heffez, and it will only be through Him that she will be healed. We will continue to pray that her recovery will be complete, but also know that she has been through alot, and will be thankful for whatever she is given. As long as the headaches stay away that is a tremendous blessing in itself.
Thanks again to EVERYONE for all your prayers and support!
Marvin and Kathy Kaptein (Cindy's parents)
The Doctor said the nausea that she has been dealing with since the surgery could be from overdraining, but didn't want to adjust the shunt up yet thinking her body will adjust to that. That is still a better problem to have than too much pressure. He thinks if this shunt will go well for 3 to 6 months, it should be good possibly indefinately. She has talked about a good portion of her scalp being numb, the Dr said they had to put an incision in her neck this time to get the tube down to her stomach, and they could have cut through some nerves in her neck, but that feeling should eventually come back. Cindy has said her neck was very sore, black and blue and swollen this time which she did not have last time.
As parents we are rejoicing that there is a light again showing through this long dark time in our daughter's life. We know so many people have been praying for Cindy, Kyle and their family, and we would also like to say how much we have appreciated all your prayers for them. We know that it was only through God that Cindy was lead to Dr. Heffez, and it will only be through Him that she will be healed. We will continue to pray that her recovery will be complete, but also know that she has been through alot, and will be thankful for whatever she is given. As long as the headaches stay away that is a tremendous blessing in itself.
Thanks again to EVERYONE for all your prayers and support!
Marvin and Kathy Kaptein (Cindy's parents)
Monday, March 23, 2009
One more thing. .
Tomorrow at 9:30 I meet with my dr, and then we will head for home. We will see how the travel goes and either get home tomorrow night or drive part of the way and finish the trip on Wednesday.
One week today
It was a week ago today that I had the surgery. I was laying in bed last night thankful that I am on this side of the surgery--I remember last Sunday night dreading it.
Tonight is the school musical that Riley is in. He is upset that we aren't there to watch it, which just makes me feel awful. If you see him there tonight, will you give him a hug for me? Of all the challenges this has caused, the issues with the kids are by far the hardest.
Mary asked about the shunt and why I have an incision in my stomach. Basically, the shunt is a long tube with a little gadget on it. The gadget is the bump on my head that regulates the flow of spinal fluid. From that gadget, on one end the tube goes into my brain where the spinal fluid is produced. The other side has the tube that runs down behind my ear, down my neck and chest and then drains into the abdominal cavity. Since the ns wanted to keep the shunts totally separate, he has the incision in the left side right below the bottom of my rib. The right side shunt has the incision right below where my ribs join--so quite a bit higher.
A small decision I have to make again is about my hair. I have three lengths--bald on the left, a little longer patch on the right side and then longer yet on the rest. Do I shave it again? Leave it? My impulse is to shave it--then it is all the same again and I don't have some hair going wild when I take off my hat. But a bald head isn't all that attractive. . .Drivers license picture, here I come!
Tonight is the school musical that Riley is in. He is upset that we aren't there to watch it, which just makes me feel awful. If you see him there tonight, will you give him a hug for me? Of all the challenges this has caused, the issues with the kids are by far the hardest.
Mary asked about the shunt and why I have an incision in my stomach. Basically, the shunt is a long tube with a little gadget on it. The gadget is the bump on my head that regulates the flow of spinal fluid. From that gadget, on one end the tube goes into my brain where the spinal fluid is produced. The other side has the tube that runs down behind my ear, down my neck and chest and then drains into the abdominal cavity. Since the ns wanted to keep the shunts totally separate, he has the incision in the left side right below the bottom of my rib. The right side shunt has the incision right below where my ribs join--so quite a bit higher.
A small decision I have to make again is about my hair. I have three lengths--bald on the left, a little longer patch on the right side and then longer yet on the rest. Do I shave it again? Leave it? My impulse is to shave it--then it is all the same again and I don't have some hair going wild when I take off my hat. But a bald head isn't all that attractive. . .Drivers license picture, here I come!
Sunday, March 22, 2009
Flowers
Here is a picture of the flowers I received--aren't they beautiful! I am such a flower nut so this is really a treat.
Staying
We have decided to stay in Milwaukee until Tuesday and see the doctor (he's in surgery Mondays). There isn't anything alarmingly wrong. However, I am continuing to fight nausea, especially if I stay up for more then about 2 hours. The ringing in my ears has resumed, which often has been a bad sign for me that the pressure is inching up. Most likely he will tell me that everything looks ok. I called the neuro floor of the hospital to ask a few questions to help decide if we should leave or not. They aren't surprised by the nausea and i guess I'm not either. There isn't a lot he can do again without surgery but we decided that having him look things over and reviewing everything probably isn't a bad idea. It also give me a couple more days to prepare for the trip back. Even though I really am not feeling well I don't have a headache--which is wonderful.
Each surgery seems to be more difficult to recover from and this has definitely not been an exception. I wake up in a great deal of pain and then it is up and down throughout the day. The top and left side of my scalp is mostly numb and half of my ear is numb, too. Thankfully Kyle helps me with washing my hair. I'm not supposed to get the staples wet and I can't feel what I am doing with my head. The incision in my stomach is horizontal and right at the waistline of my jeans and sweatpants. I keep them rolled down, but it is fairly sensitive. My head is the biggest problem, though. Too bad there isn't such a thing as a head transplant--I would love that! :)
Each surgery seems to be more difficult to recover from and this has definitely not been an exception. I wake up in a great deal of pain and then it is up and down throughout the day. The top and left side of my scalp is mostly numb and half of my ear is numb, too. Thankfully Kyle helps me with washing my hair. I'm not supposed to get the staples wet and I can't feel what I am doing with my head. The incision in my stomach is horizontal and right at the waistline of my jeans and sweatpants. I keep them rolled down, but it is fairly sensitive. My head is the biggest problem, though. Too bad there isn't such a thing as a head transplant--I would love that! :)
Saturday, March 21, 2009
Another day. .
Today has been a little bit better. I am still laying down quite a bit of the time but trying to walk around the hotel room regularly and around the hotel (with my head covered!) a couple times a day. Kyle moved us from a small, inexpensive room after the first night where he (and my mom) always stays while I am in the hospital to a hotel across the parking lot that is much roomier. It has a small sitting room with tv so the computer is in here along with a tv and that is where he hangs out a lot of the time. It is so nice! I really miss being home, though. We will see how I am doing tomorrow--we have been just going day to day.
I am continuing to struggle some with nausea. When I lay down for a while it usually subsides which is often a sign of low pressure. However, with my history I really don't think I want to have the shunt adjusted so that the pressure goes up a bit. It may just settle down as my body adjusts to all this but is a little concerning to me. But it may just be my body adjusting to everything that has happened. It seems that nausea is more common when the brain is messed with so maybe it will gradually subside.
Yesterday was a tough day and I was pretty blue. Today has been a little better.
Thank you so much for your prayers and encouragement. I so appreciate it!
I am continuing to struggle some with nausea. When I lay down for a while it usually subsides which is often a sign of low pressure. However, with my history I really don't think I want to have the shunt adjusted so that the pressure goes up a bit. It may just settle down as my body adjusts to all this but is a little concerning to me. But it may just be my body adjusting to everything that has happened. It seems that nausea is more common when the brain is messed with so maybe it will gradually subside.
Yesterday was a tough day and I was pretty blue. Today has been a little better.
Thank you so much for your prayers and encouragement. I so appreciate it!
Friday, March 20, 2009
a little more. .
I took a couple pictures on the computer. My dad wanted to see how I looked and thought that someday when I am running and feeling good :) that it would be good to look back at where I've been. I ran out of steam last time I wrote so Kyle finished for me. I had a very relaxing day, dozing quietly for about 4 hours. That has improved things for me. Nausea has been a problem on and off and today has not been an exception. My guess is that it is taking a little time for my brain to adjust to the new invasion.
The "explosion" a few days ago was the worst thing that I have ever had. To say that the pain was bad is a huge understatement. The pain chart asks for the worst pain you can imagine but this was beyond what I could imagine. We (Kyle and I) concluded at the time that this was the end for me. I am ok with that--there are many things worse then death--and I know that heaven will be a glorious place. But the Lord must have more plans for me because here I am. At this point the most fearful thing for both of us is a recurrence. The doctor said I had a bowel obstruction and that my stomach must have really hurt, but in all honesty I don't remember my stomach hurting at all. He thinks that the shunts both probably stopped working because the pressure in my stomach was great. I don't know if that completely explains why it was so bad, but then only the Lord really knows the answers to those questions--we humans just guess the best we can. If it happens again I hope the Lord takes me quickly because I don't think I can do that again. . .
My parents and sisters surprised me today with a beautiful bouquet of spring flowers delivered to our room. What a pick me up. I am really too tired to read much (for those that know me know that is a shocker!) or watch tv so I have the flowers sitting right next to my bed and I can just look at them. What a blessing.
One last thing before I lay down. Thank you so much for your comments and emails! I would guess we check the blog & email at least 10 times a day and each email/comment--even one short sentence--is a pick me up and blessing. Thank you! I am really not answering right now--I just don't have the energy or mental capacity to do that, but they are each hugely appreciated! Cindy
The "explosion" a few days ago was the worst thing that I have ever had. To say that the pain was bad is a huge understatement. The pain chart asks for the worst pain you can imagine but this was beyond what I could imagine. We (Kyle and I) concluded at the time that this was the end for me. I am ok with that--there are many things worse then death--and I know that heaven will be a glorious place. But the Lord must have more plans for me because here I am. At this point the most fearful thing for both of us is a recurrence. The doctor said I had a bowel obstruction and that my stomach must have really hurt, but in all honesty I don't remember my stomach hurting at all. He thinks that the shunts both probably stopped working because the pressure in my stomach was great. I don't know if that completely explains why it was so bad, but then only the Lord really knows the answers to those questions--we humans just guess the best we can. If it happens again I hope the Lord takes me quickly because I don't think I can do that again. . .
My parents and sisters surprised me today with a beautiful bouquet of spring flowers delivered to our room. What a pick me up. I am really too tired to read much (for those that know me know that is a shocker!) or watch tv so I have the flowers sitting right next to my bed and I can just look at them. What a blessing.
One last thing before I lay down. Thank you so much for your comments and emails! I would guess we check the blog & email at least 10 times a day and each email/comment--even one short sentence--is a pick me up and blessing. Thank you! I am really not answering right now--I just don't have the energy or mental capacity to do that, but they are each hugely appreciated! Cindy
Tougher Day
This is Cindy again. I woke up hurting quite a bit this morning and that has made me a little blue. I am taking as little pain medication as I can in fear of a reoccurrence of that explosion I had the other day. Dr Heffez thought that it was stomach related. The pain isn't all that bad but I am not moving much yet. We are planning on staying in our hotel again tonight. We will take it day by day to see how my strength is to do some traveling.
Thursday, March 19, 2009
Released!
This is Cindy writing again. Dr Heffez unexpectedly left town last night for a few days and told me that if I felt ready to leave the hospital I could today--so I did. We are staying in the hotel near the hospital tonight and we will see how tomorrow is. I don't have a headache! Yahoo!! I a feeling pretty weak, though, but that will get better.
I have a few incisions--a new one on my left abdomen below the rib, the normal "fishhook" incision on the left side of my head right at the hair line (I think--I am totally bald there), a couple stitches above my ear and a rather painful small incision in my neck a little below my left earlobe. About 1/3 of my hair is gone again, so now we have to decide what to do with it.
I am feeling better then I have for a while, which isn't saying a whole lot, but better then having a headache. Incredibly weak, but that will come. Depending on how I am doing, we may start heading for home tomorrow. Will write more tomorrow.
I have a few incisions--a new one on my left abdomen below the rib, the normal "fishhook" incision on the left side of my head right at the hair line (I think--I am totally bald there), a couple stitches above my ear and a rather painful small incision in my neck a little below my left earlobe. About 1/3 of my hair is gone again, so now we have to decide what to do with it.
I am feeling better then I have for a while, which isn't saying a whole lot, but better then having a headache. Incredibly weak, but that will come. Depending on how I am doing, we may start heading for home tomorrow. Will write more tomorrow.
Wednesday, March 18, 2009
Feeling Better
Today was a better day. Cindy got a good night rest last night. Her stomach is doing much better and she was eating crackers and jello today. All the x-rays and CT Scans have all come back looking good. Dr Heffez came in late tonight to adjust the shunt to a wider opening. We are pretty sure that she is going to get released tomorrow from the hospital but we are planning on staying in Milwaukee an extra day or two to make sure everything is going well before we head back home.
Kyle
Kyle
Tuesday, March 17, 2009
Tough Day
Even tho it was a beautiful day outside today, this is a day that we are glad it is over. Cindy had a bad night last night in the ICU. It was very busy and noisy in the unit and she did not get much sleep. After I left her last night she decided to sit in a chair which gave her nausea and she vomitted. She slept a lot of the morning and at 2pm they moved her out of ICU to a regular hospital room. At 4pm she vomitted again and I think she got the worst head pain that she has ever had. To put it in her words - her head was exploding. They ended up bringing her for more x-rays and scans. She is having some problems w/ her bowels and feel she has air in her colon. They are hoping to get her to have a bowel movement tonight. Tomorrow morning she is having x-rays done again. As far as the head - everything came back looking fine to Dr Heffez. They gave her some pretty good pain medication that knocked her out. So maybe we won't know what caused her head to explode. Maybe it was the brain telling her that it doesn't like the second addition. I don't think our bodies were made to put things in them. We are just praying that explosion never comes back again. I don't think I will forget St Patty's Day 2009.
Kyle
Kyle
Monday, March 16, 2009
Monday Night
Cindy is doing well. They did put her in an ICU room for the night. I think they wanted to play it safe since she has had a few operations in the past 2 months. The CT Scan was done at 4:30pm today and we should have the results of that tomorrow morning. If things go well thru the night she should get transported to a regular room tomorrow. Dr. Heffez did say that he is planning on keeping her in the hospital an extra day instead of sending her home early to make sure everything is going well. The new shunt is programmed at the least amount of fluid to flow. He does think the first shunt is still working a little bit - dripping. But he said that might get adjusted before we leave if needed. It is very weird to go to a large hospital and the nurses and staff and doctors know you on a first name basis.
Surgery is over
Kyle and Cindy spoke with Dr. Heffez before the surgery this morning and his plan was to put in a VP shunt in her brain, but if that didn't look like it was going to work, he was going to abort that procedure and put a shunt in her back.
Kyle called about an hour ago and said he put in the VP shunt in her brain and was very incouraged. He was able to position it better than the other one that she still has and it was still flowing well when he closed her up. She will have another CT scan tonite to make sure that it has stayed in the same position. When the fluid drains down there is a chance that it would move. He also wants to keep her in the hospital a little longer to make sure all is well. She should feel relief right away except for the pain where they inserted the new shunt in the left side of her skull.
This ordeal has been such a difficult one for Cindy, Kyle and our families. Cindy's faith has grown stronger, but there have also been so many discouraging times. We have talked much, prayed together and read the Bible together and shed many tears together, and through this all I think the faith of all of us has grown.
But we are also going to be cautiously optimisitic. We know all is in God's plan and he has a plan for each of us although we don't know what His plan for us is. Cindy and I talked quite awhile again yesterday, as we do every day, and was just so thankful that our whole family is now living here, which was also in God's plan. It has helped everyone (especially Kyle's family) to spread the work around with all of us, and it would have been very difficult for Marvin and I to not be here with our daughter going through the ordeal she has been going through.
Please continue to keep Cindy and Kyle in your prayers, and pray that this shunt will be successful .
Kyle will give more of an update tonight when he gets back from the hospital.
Thanks to all for all your prayers and support.
Kathy Kaptein (Cindy's mom)
Kyle called about an hour ago and said he put in the VP shunt in her brain and was very incouraged. He was able to position it better than the other one that she still has and it was still flowing well when he closed her up. She will have another CT scan tonite to make sure that it has stayed in the same position. When the fluid drains down there is a chance that it would move. He also wants to keep her in the hospital a little longer to make sure all is well. She should feel relief right away except for the pain where they inserted the new shunt in the left side of her skull.
This ordeal has been such a difficult one for Cindy, Kyle and our families. Cindy's faith has grown stronger, but there have also been so many discouraging times. We have talked much, prayed together and read the Bible together and shed many tears together, and through this all I think the faith of all of us has grown.
But we are also going to be cautiously optimisitic. We know all is in God's plan and he has a plan for each of us although we don't know what His plan for us is. Cindy and I talked quite awhile again yesterday, as we do every day, and was just so thankful that our whole family is now living here, which was also in God's plan. It has helped everyone (especially Kyle's family) to spread the work around with all of us, and it would have been very difficult for Marvin and I to not be here with our daughter going through the ordeal she has been going through.
Please continue to keep Cindy and Kyle in your prayers, and pray that this shunt will be successful .
Kyle will give more of an update tonight when he gets back from the hospital.
Thanks to all for all your prayers and support.
Kathy Kaptein (Cindy's mom)
Sunday, March 15, 2009
We're here
We made it to Milwaukee this afternoon and the trip went pretty well considering. I did get pain meds (shots) at the hospital this morning at about 5:45 before leaving which helped.
Tomorrow is the surgery and I am ready. The first 24 hours is always the hardest because the pain is the highest and I have problems with being confused and disoriented. It isn't going to be an easy day, and one that I would gladly skip if I could. But the headaches are strong and I really can't live the way that I am. I'm not all that strong physically or mentally right now.
I think the last month or two have been the toughest in this nearly 3 year journey. It has been a time of realization that this very well may be the way I will be living. With that comes the giving up of dreams that you don't even realize that you have--attending kids events, taking family vacations, and just living a normal life. I am praying that the Lord will answer our prayers, and those of many others, to heal me and allow this surgery to be successful and I fully know that He can do that but I also understand that He may say no. That is the tough part.
Tomorrow is the surgery and I am ready. The first 24 hours is always the hardest because the pain is the highest and I have problems with being confused and disoriented. It isn't going to be an easy day, and one that I would gladly skip if I could. But the headaches are strong and I really can't live the way that I am. I'm not all that strong physically or mentally right now.
I think the last month or two have been the toughest in this nearly 3 year journey. It has been a time of realization that this very well may be the way I will be living. With that comes the giving up of dreams that you don't even realize that you have--attending kids events, taking family vacations, and just living a normal life. I am praying that the Lord will answer our prayers, and those of many others, to heal me and allow this surgery to be successful and I fully know that He can do that but I also understand that He may say no. That is the tough part.
Saturday, March 14, 2009
Parting
This day of parting with the kids is always the hardest part for me. The kids seem to handle it pretty well--it has become a "normal" thing for mom to be in the hospital. I guess kids are pretty resilient.
Tara told me this morning that she hopes they don't shave off my hair again because I don't really look like her mom when I don't have hair. Riley is worried about the staples and hopes that if I have them in my head again that I can have them covered with a bandage. Oh, the little things in life. . .
Tara told me this morning that she hopes they don't shave off my hair again because I don't really look like her mom when I don't have hair. Riley is worried about the staples and hopes that if I have them in my head again that I can have them covered with a bandage. Oh, the little things in life. . .
Friday, March 13, 2009
Surgery time changed
My doctor's office called to let me know that my surgery now is at 7:30 Monday morning.
Kylie's birthday is tomorrow. Since the kids will be going to their grandparents and aunt's house tomorrow evening to stay during my surgery, Kyle took the kids out for supper tonight to celebrate. We leave early Sunday morning since I tend to be a little better in the mornings and I wake up pretty early.
My headache continues to intensify. I broke down a couple days ago and started taking pain meds occasionally. It doesn't really help the headache but it seems to help me deal with the pain a little better.
I am blessed to have a distant relative that is a neurosurgeon and another that is a medical researcher. Both have confirmed that the treatments that I have had and are doing are the only known treatments. As one stated, my brain is really too big for my head, which is the chiari malformation, and that creates too much pressure on the back of my brain which hinders the flow of spinal fluid--thus the pseudotumor cerebri. The primary treatment for both diseases is surgery, which I have done and am doing again. I am really praying that I will be able to resume a partially normal life after this surgery.
The blessings that I have received from this disease is much support from my family, church family and friends. I have also found that my faith has grown and I have taken much more time to study God's Word. This hasn't been easy, but God has been faithful.
Renae, my sister, came today and went through all of the kids clothes--which I haven't done well for quite a while. She is doing the shopping for the kids again, which is such a blessing. She has been doing that for me for a couple years now most of the time. I miss doing these things, but am so thankful that she is taking care of it.
Kylie's birthday is tomorrow. Since the kids will be going to their grandparents and aunt's house tomorrow evening to stay during my surgery, Kyle took the kids out for supper tonight to celebrate. We leave early Sunday morning since I tend to be a little better in the mornings and I wake up pretty early.
My headache continues to intensify. I broke down a couple days ago and started taking pain meds occasionally. It doesn't really help the headache but it seems to help me deal with the pain a little better.
I am blessed to have a distant relative that is a neurosurgeon and another that is a medical researcher. Both have confirmed that the treatments that I have had and are doing are the only known treatments. As one stated, my brain is really too big for my head, which is the chiari malformation, and that creates too much pressure on the back of my brain which hinders the flow of spinal fluid--thus the pseudotumor cerebri. The primary treatment for both diseases is surgery, which I have done and am doing again. I am really praying that I will be able to resume a partially normal life after this surgery.
The blessings that I have received from this disease is much support from my family, church family and friends. I have also found that my faith has grown and I have taken much more time to study God's Word. This hasn't been easy, but God has been faithful.
Renae, my sister, came today and went through all of the kids clothes--which I haven't done well for quite a while. She is doing the shopping for the kids again, which is such a blessing. She has been doing that for me for a couple years now most of the time. I miss doing these things, but am so thankful that she is taking care of it.
Thursday, March 12, 2009
Kids events
Kyle and the kids are at the pinewood derby tonight. Tanner & Riley are both racing a car. Next week the older kids have their instrumental concert while I am in the hospital. There last one was also during one of my hospital stays. It saddens me so much to miss these events in the kids' lives. The week after my surgery there are three musical events the kids are in that I would love to attend, but that might be difficult one week after surgery. We'll see. If it is close to possible, I will be there!
In a way it is hard not knowing which surgery I will be having--shunt in the brain or in my spinal cord. Will my head look like a patchwork quilt with three lengths of hair including 1/3 of it gone? I think that I will have the incision in my stomach either way and maybe I will have a matching incision in my back. I guess we will see. Kyle reminded me that my drivers license renews this summer--that may be a drivers license picture that I will want to hide! In my last picture I was sunburned and it always made me laugh. I'm not sure I will find this one as humorous.
In a way it is hard not knowing which surgery I will be having--shunt in the brain or in my spinal cord. Will my head look like a patchwork quilt with three lengths of hair including 1/3 of it gone? I think that I will have the incision in my stomach either way and maybe I will have a matching incision in my back. I guess we will see. Kyle reminded me that my drivers license renews this summer--that may be a drivers license picture that I will want to hide! In my last picture I was sunburned and it always made me laugh. I'm not sure I will find this one as humorous.
Wednesday, March 11, 2009
Tidbits
It seems as though my headache is getting stronger, but I am thankful that I have made it this far without intervention.
I hope the new blog format is a little more user friendly. I am not all that "techie" but stumbled onto the way to change it. Kyle or I will keep the blog updated while I am in the hospital next week.
My outlet for communication and sometimes just to "say it out loud" so to speak is this blog. It is so focused on me, though, and sometimes I feel badly about that. I am very aware of many other trials and hardships in others lives. It seems that the Lord leads each of us down a path that has some challenges and difficulties. I appreciate your support while many of you are walking down your own difficult and rocky path.
I hope the new blog format is a little more user friendly. I am not all that "techie" but stumbled onto the way to change it. Kyle or I will keep the blog updated while I am in the hospital next week.
My outlet for communication and sometimes just to "say it out loud" so to speak is this blog. It is so focused on me, though, and sometimes I feel badly about that. I am very aware of many other trials and hardships in others lives. It seems that the Lord leads each of us down a path that has some challenges and difficulties. I appreciate your support while many of you are walking down your own difficult and rocky path.
Tuesday, March 10, 2009
Please continue to pray
I spoke with the ns this morning. He is not going to decide which shunt to place until I am in the hospital Monday morning. He again said that the vp shunt (head) is bound to fail and the lumbar (lower back) shunt may very well recreate the chiari issues which would result in another possible chiari surgery. I told him that I would prefer the vp shunt because the thought of doing another chiari surgery is overwhelming but would do whichever he thought best. He doesn't think either is a good option but there aren't any other options besides doing nothing.
It is difficult going into surgery knowing that medically the outcome is very questionable. Last night the headache was really bad. So do I go forward with a questionable surgery in the hope that it might help or do I try living this way? At this point it seems I should do the surgery but I dread it. Please continue to pray for my ns as he makes the decision with which shunt to do and peace and courage for me and my family to accept God's answer to our prayers if He answers no.
It is difficult going into surgery knowing that medically the outcome is very questionable. Last night the headache was really bad. So do I go forward with a questionable surgery in the hope that it might help or do I try living this way? At this point it seems I should do the surgery but I dread it. Please continue to pray for my ns as he makes the decision with which shunt to do and peace and courage for me and my family to accept God's answer to our prayers if He answers no.
Monday, March 9, 2009
Time passing
A week from today at this time I will be done with my surgery, Lord willing. We are really praying that it will successfully give me relief. Tara is the only one so far with the influenza a and she is improving. No fever since yesterday.
I had my pre-op and assuming the labs come through ok I am ready for surgery. Tanner also came today to the doctor and needs to have an infected ingrown toenail removed Friday. He is a little nervous about that but it really needs to be done. Seems that our family is spending a little too much time with medical issues just lately! :)
As I think about my illness I have to specifically say that I am so thankful for my husband. He is basically a single dad right now, taking care of all things big and small with the kids, plus taking care of me. Taking care of me hasn't been easy with repeated surgeries, medical tests, and my inability to function beyond survival most of the time. Physically it is exhausting and mentally very difficult. He really struggles seeing me in pain, especially during difficult testing and surgeries. I am so incredibly thankful for his love and devotion to me during this journey that seems to have no end. When you make your marriage vows and commit to "in sickness and in health" you really don't know what you are committing to until something like this happens. I am so blessed to have a husband so deeply committed to me and our family. Please continue praying for Kyle and the kids. This has been an arduous journey for them.
I had my pre-op and assuming the labs come through ok I am ready for surgery. Tanner also came today to the doctor and needs to have an infected ingrown toenail removed Friday. He is a little nervous about that but it really needs to be done. Seems that our family is spending a little too much time with medical issues just lately! :)
As I think about my illness I have to specifically say that I am so thankful for my husband. He is basically a single dad right now, taking care of all things big and small with the kids, plus taking care of me. Taking care of me hasn't been easy with repeated surgeries, medical tests, and my inability to function beyond survival most of the time. Physically it is exhausting and mentally very difficult. He really struggles seeing me in pain, especially during difficult testing and surgeries. I am so incredibly thankful for his love and devotion to me during this journey that seems to have no end. When you make your marriage vows and commit to "in sickness and in health" you really don't know what you are committing to until something like this happens. I am so blessed to have a husband so deeply committed to me and our family. Please continue praying for Kyle and the kids. This has been an arduous journey for them.
Saturday, March 7, 2009
Concern
Tara ended up with a fever again last night so she saw the doc today and has influenza a. Not a good thing, especially with surgery for me the 16th. The rest of us are going to take preventatives and hope that we don't get it.
Friday, March 6, 2009
steady
Sometimes it is hard to tell someone how the headaches are because they vary through the day and I think I lose perspective sometimes. It seems that they are holding a little steady with evenings being worse then the days. I have had difficulty sleeping for quite a while, as I have mentioned to some. I have been taking Ambien (sleeping med) but a few times I have had to switch to the extended release Ambien when the pain level becomes too high. I started taking the extended release, which keeps releasing meds through the night, 3 nights ago because I would wake up right when the medication would wear out--about 2 or 3 am. Now I can sleep until about 5 or 6, which is much better. Otherwise I don't sleep at all--it is almost like my brain forgets how to sleep when the pressure is high. However, when the headache is down considerably I don't take anything and sleep just fine. (Like following my shunt placement when I felt so well).
Tara came home sick yesterday with a fever so I am concerned about catching whatever that was. She woke up this morning feeling cheerful and smiley so it didn't last long--thankfully!
For a few days after I scheduled the surgery I felt like I was clawing for information online that I could use as an alternative to surgery. I am dreading this surgery more then I have any of the last 4. It seems like there is no alternative, though. Kyle mentioned to me a few days ago that there have been several times that it seemed that there were no options and then a door would open. We continue following those open doors and it seems that this is the only open door. I am feeling more peace about that. I am so thankful for the prayers of so many people and also that God's grace is sufficient during tough times. Several people have told me that I seem so strong, but I really am not. I know that God is carrying me through all this but He alone is giving me strength because I certainly don't have it by myself. That doesn't mean I don't have tears sometimes or ask a lot of why's, but God continues to be faithful through my questions and tears.
Tara came home sick yesterday with a fever so I am concerned about catching whatever that was. She woke up this morning feeling cheerful and smiley so it didn't last long--thankfully!
For a few days after I scheduled the surgery I felt like I was clawing for information online that I could use as an alternative to surgery. I am dreading this surgery more then I have any of the last 4. It seems like there is no alternative, though. Kyle mentioned to me a few days ago that there have been several times that it seemed that there were no options and then a door would open. We continue following those open doors and it seems that this is the only open door. I am feeling more peace about that. I am so thankful for the prayers of so many people and also that God's grace is sufficient during tough times. Several people have told me that I seem so strong, but I really am not. I know that God is carrying me through all this but He alone is giving me strength because I certainly don't have it by myself. That doesn't mean I don't have tears sometimes or ask a lot of why's, but God continues to be faithful through my questions and tears.
Wednesday, March 4, 2009
Surgery Scheuled
Surgery is scheduled for March 16 at 10:30. The decision between the lp and vp shunt is pending. Please continue praying for wisdom for Dr Heffez as he determines the best option for me. My headaches have intensified so I am a little concerned about the wait as well. Please pray for strength and much grace for my family and I.
Tuesday, March 3, 2009
Please pray
Please pray for my neurosurgeon as he is making a big decision regarding me.
He called me back tonight. He is concerned about another vp shunt because this one isn't working so well and he anticipates the same may likely be true of a second. He told me that his rule is always NOT to put a lp shunt in a person with chiari--which I have. An lp shunt can cause complications with chiari and can result in the necessity of another chiari surgery--sometimes soon and sometimes not. He studied my mri's before calling me and said that the other bad thing about the lp shunt is that I have a very small area around my brain stem which will make the surgery difficult. He ended by saying that he would schedule surgery but had to really think about which shunt (which will be the second) would be the best choice for me.
Just an fyi, I am not medically inclined but I thought I would explain a couple things so this makes a little more sense as well as I can. I might not be right on. First, my vp shunt has been a problem because the tubing runs into my brain into a ventricle of the brain--a fold in the brain where the spinal fluid is produced--and my ventricles are extremely small. So fluid drains and my brain collapses on the tube. I have studied the lp shunt little but my understanding is that the shunt (the bump some of you have seen on my head) is placed in the lower spinal cord. It drains in the abdomen like the vp. It sounds like a tube runs up the spine to the brain stem, which is why he is so concerned about the size of the fluid around that area. I've explained this as best I understand it but if I figure out something is wrong I will clarify later.
Neither are real good options, but we don't have any others. We have exhausted our options. We are praying the Lord will lead the doctor to make the best decision that will give me some good years. We don't understand why the Lord is leading us down this difficult path but we know He has a plan and are focusing on that right now.
He called me back tonight. He is concerned about another vp shunt because this one isn't working so well and he anticipates the same may likely be true of a second. He told me that his rule is always NOT to put a lp shunt in a person with chiari--which I have. An lp shunt can cause complications with chiari and can result in the necessity of another chiari surgery--sometimes soon and sometimes not. He studied my mri's before calling me and said that the other bad thing about the lp shunt is that I have a very small area around my brain stem which will make the surgery difficult. He ended by saying that he would schedule surgery but had to really think about which shunt (which will be the second) would be the best choice for me.
Just an fyi, I am not medically inclined but I thought I would explain a couple things so this makes a little more sense as well as I can. I might not be right on. First, my vp shunt has been a problem because the tubing runs into my brain into a ventricle of the brain--a fold in the brain where the spinal fluid is produced--and my ventricles are extremely small. So fluid drains and my brain collapses on the tube. I have studied the lp shunt little but my understanding is that the shunt (the bump some of you have seen on my head) is placed in the lower spinal cord. It drains in the abdomen like the vp. It sounds like a tube runs up the spine to the brain stem, which is why he is so concerned about the size of the fluid around that area. I've explained this as best I understand it but if I figure out something is wrong I will clarify later.
Neither are real good options, but we don't have any others. We have exhausted our options. We are praying the Lord will lead the doctor to make the best decision that will give me some good years. We don't understand why the Lord is leading us down this difficult path but we know He has a plan and are focusing on that right now.
Monday, March 2, 2009
Dropped the med
Saturday night we decided that enough is enough and dropped the Diamox. I could eat nothing but a little jello now and then and was just miserable. I took it in November for a month and could not overcome the nausea, either, and anti-nausea meds do nothing. So I was miserable until Sunday night, then was able to eat a meal. So I guess I didn't make it a week but we all decided it just wasn't worth it.
Ironically the headache settled down a bit Sunday evening even though the diamox was probably out of my system by then. It has been more tolerable today but it is gaining intensity. So I don't know if it was starting to help but I guess the choice between headache & nausea or just headache wasn't too hard.
We are seriously considering the second shunt, although another surgery is daunting to me. You would think after 4 surgeries in about a year, another wouldn't be a big deal. However, I am weakening more and more each time and that makes it harder and harder to recover each time. I don't even know who I am anymore when I look in the mirror--but that doesn't really matter if I can just get better.
Ironically the headache settled down a bit Sunday evening even though the diamox was probably out of my system by then. It has been more tolerable today but it is gaining intensity. So I don't know if it was starting to help but I guess the choice between headache & nausea or just headache wasn't too hard.
We are seriously considering the second shunt, although another surgery is daunting to me. You would think after 4 surgeries in about a year, another wouldn't be a big deal. However, I am weakening more and more each time and that makes it harder and harder to recover each time. I don't even know who I am anymore when I look in the mirror--but that doesn't really matter if I can just get better.
Subscribe to:
Posts (Atom)