Out three weeks today!

Today has been better. I think the storms are causing me some problems.

Last night I had a third of a hamburger and it went well! That is so encouraging--although a little scary to eat something "new" and not know what will happen. So I am pretty happy about that.

I am still having some pain in or under my right rib. It isn't all the time but I am bothered by it more when I am tired or been up to much. It probably is no big deal but I have a follow up with the general surgeon the 24th and the neurosurgeon on the 20th. I expect a clean bill of health but we'll see what they have to say. The rash that I have mentioned before seemed to be getting a little better, but now I am starting to get new patches of it on my stomach and back. Gr. . . Oh, well. Things continue to improve. I am doing incredibly well for as sick as I was. I have so very much to be thankful for!

Wednesday

I'm still not feeling the best, but a rainstorm came in this afternoon, so I am guessing that might be why.

I am making progress with food. I have eaten fish a couple times and it stayed down. I had a little bit of chicken and that has been ok, too. Progress! I still need to eat smaller portions regularly throughout the day. Yesterday I drove for the first time in a few months--that was rather odd! And I did get my drivers license renewed today. All steps of progress.

Today hasn't been quite as good--who knows why. I am a little headachey--not bad at all but it is always concerning. I walked around outside this afternoon and noticed clouds coming in so could the weather be changing? I really need to watch the weather more closely.

I haven't been taking pain medication since returning from Florida. I really don't like taking it so when I can live without it I generally just skip it. However, I am still taking a sleeping pill. My sleeping isn't so good yet, but hopefully that will improve with time. It usually does.

I don't remember if I have written this already, but I feel like I have an urgency to try to get in as many activities as I possibly can. Even if I am not quite ready, I am pushing to do things. Probably the "just in case" mentality that I just can't shake. I've been up and down so many times and haven't been able to do many normal things for such a long time. So I really want to go out for supper (not sure what I will eat!), go to a movie (it has been a few years), go to a concert (Steve Green is coming to town), and I really wish the kids had activities that I could watch right now while I am doing well. I can't say that I am pessimistic but maybe just realistic after the experiences that we've had. That being said, I really do think/hope/pray that our challenging journey has come to an end and that life will just become more and more normal.

Sabbath

Today I will be able to worship the Lord in church for the first time in a couple months. I am pretty excited!

For those that would like to pray for and keep track of Evan (Chic) Van Ginkel, please look at his caringbridge site. The website name used in Chic. The family would appreciate your prayers!

We finally broke down and rented a wheelchair today. I really can't go out much because I am too weak to walk far at all. I have been opposed to it because I guess I just didn't want to admit that I needed it or maybe hoped I would regain strength faster. Well, today it was clear that it was time. So we got out of the house for a while this afternoon and it was so nice. Now I am pretty tired and will head to bed in a moment. I think I am getting stronger but it is very slow. I think I went backwards for a few days when returning from Florida but that isn't so surprising. I can walk around for a while and do my physical therapy exercises but spend a lot of time sitting and I have to lay down in a quiet area for a few hours a day. But, I am making progress. Patience is a virtue that I need to continue working on.

I always like to look at pictures, so I thought I would add a few of my own. :)

Thursday

Kyle and the kids will be home soon. It has been good for me to have a couple days of quiet time to rest and recover from the trip, etc. I hope I am ready for the busyness of life with a family again.

I am feeling pretty well. My head is very good. I can't say that the headache is gone completely but I would describe it as a dull ache now instead of a headache--very tolerable. I can live this way. I have been able to handle noise pretty well and a lot of movement around me used to be a problem but I can take that as well. My head has been my biggest concern and so far, so good. The rest of it will come. My body is very weak yet, but as time goes by that will improve. I have a rash that started as a few spots on my legs but is getting worse and now is on my face and neck. My doctor believes that it is probably a viral thing, which I am pretty susceptible to because I have been so sick. My right side still hurts, particularly when I am more tired or have been up too long. I continue to use caution in what I eat, but try to eat throughout the day. Sitting down for a few bigger meals just isn't working for me right now.

When I was in the hospital a few of the doctors that visited told me that I had been a very sick woman, and that again has made me realize how serious and sick that I was. If the infection has traveled up the tubing and into my brain, I may not be here right now or mentally may not be the same, so I really do have much to be thankful for.

I am completely bald but I now have "stubble." A few have asked if it bothers me that I don't have hair. It did at first and I am careful to wear hats when I am out of the house. However, after everything that has happened, hair has become a pretty small detail. It will come back. I think I will keep it pretty short so that if I need another surgery and my head is shaved, it isn't such a shock to my kids. They are bothered by my hair being gone the most. My perspective on many things have changed and I have found that having hair just is not that big of a deal.

The Lord has provided so richly for our family through this ordeal. He has given strength in weakness and His grace in adversity. I am so thankful for my faith in Him--I don't think that I could have survived this without Him carrying me and our family through. People have said that I am so strong, but I really am not. I didn't do it on my own and if you would have told me years ago that I would have survived all of this I wouldn't have believed it. God provides for us as we need it and during that time He also used the challenges to strengthen my faith. For that I am very thankful.

Home again

Wow, life is really crazy. Up until the morning that I got on the plane, I really didn't think that I would be able to go to Florida. After all, I had just had 3 surgeries within 1 1/2 months and been in hospital 2 days short of 5 weeks. The Lord really answered our prayers, and it went much better then I had hoped. I am still very weak and have a huge amount of recovering to do, but just being there with the family after all the challenges we have had was amazing. Thank you for praying for us! Kyle and the kids are on the road today and tomorrow and I am praying that they will get home safely as well.

Yesterday was my 40th birthday. I am glad that I made it to this birthday! There have been days that my family wondered if I would be here to celebrate this day. I am not sad about being 40 at all--it really is an accomplishment and I hope a start to a new and better time in my life. :)

Today I get the stitches out of my head. I started counting incisions and "openings" that were made during this last 5 week stint and have decided that I definitely have some war wounds! I have 3 incisions on my head, one on my side where the chest tube went in (and that one bothers me the most!), 2 on my chest where the shunt tubes were externalized, the 12 inch incision running down the middle of my stomach and the three smaller incisions used to place the shunt tubing in the new place next to my liver. Add that to previous surgeries and I definitely have had a few to many surgeries! :)

I will write more later. I really just wanted to write that things went well overall and I am now ready to be home for a while. I am praying that the Lord will grant me health and strength!

One more thing, please pray for Chic Van Ginkel. He was injured in a work related accident and has a brain injury that is extremely serious. He is in ICU and really needs a lot of prayers. He is the brother of Joyce in our office.

Florida!!

This is mom again, I guess I'm not officially laid off yet! Cindy asked me to put an update on this morning, she hadn't found a computer at the motel.

Cindy's trip to Florida yesterday went very well. She flew Southwest and they took very good care of her, even brought her by wheelchair to a shuttle. She did feel the different pressure in the airplane and said it was a little uncomfortable but didn't get a headache. That has been a concern of all of us for a long time, didn't know what would happen or if she would be able to fly, and now we know, it worked!

Kyle had rented a scooter for her and that was at the hotel when she arrived. Kyle and the kids got to the hotel around noon and she got there around 5:00. Kyle and the kids also had a very good trip, thank goodness for car movie screens! They all got up early to beat the crowds this morning and were at one of the parks already around 8:00. Kyle and the kids were enjoying the rides and Cindy was just thoroughly enjoying the fact that she could even be there, she is still very emotional after all that has happened. She said the scooter is very comfortable and will be there with the rest of the family as she much as she can tolerate. She can always be at the motel also, so we are all thrilled that they can be together during this "Happy" time.

The biggest concern is her getting enough food and water while there. She did pack some stuff and they were going to try to get to a grocery store. She really needs to be eating all the time to keep up her strength. She had lost 6 more lbs after she came home, but the last couple days had been going better. Her body had become accustomed to being "fed" at night, and so she didn't even feel good when she got up, but that is also improving. Her cousin was really on top of her care - Thanks again so much Lynn for all you did for her- it was so greatly appreciated by all of us and especially Cindy!! Lynn also did a little shopping for Cindy before she left. She got her some size 1 shorts and they were still a little big on her. She needs to get some meat on those bones!!

Thanks again for all your support! We are also giving MUCH thanks for the Lord's healing and His faithfulness for answering the many prayers offered on Cindy's behalf.
Kathy

Here I go

Well, after talking to my local doctor and the neurosurgeon, I have clearance to go tomorrow! I am reservedly excited. Tomorrow is going to be a big day and a very exhausting day. However, the prospect of spending the time with my family, even if I spend most of it in the hotel, sounds wonderful. After the illness that I have had we are always concerned about a relapse of some sort. It has happened so many times. But I am feeling good considering how ill I have been. I am tired quickly and easily and can't do very much yet. It is going to be a long road to recovery but this will be a nice interlude. Please pray that things go well for me. This is a bit of an adventure and pushing the limits. I really have not desire to visit Florida hospitals. But I feel a peace about going and the time with my family will be priceless.

I won't have a computer in Florida but I hope to update the blog a few times on hotel computers while I am there. :)

Improving!

I continue to improve although not nearly fast enough for me. :) The time here with my cousin Lynn has been wonderful. She is taking such good care of me! Probably the biggest thing that I have to work on is nutrition. I went for nearly a month without eating and a period of that time had severe nausea so I am struggling with food and getting things down. Today I have seen a great improvement, though. I was able to eat cold things a little easier, like fruit and yogurt. Hot things have been very difficult. It is really like I have to teach myself how to eat again. Today I was able to eat more hot things and I amazed myself by eating a piece of pizza (plain) tonight--major accomplishment! We discovered that I have been having rough mornings most likely because in the hospital they gave me iv nutrition all night that was high in sugar so I think my body is waking up weak and shaky because it is missing its nightly "meal." So I am trying to eat something with sugar right before bed and then fruit first thing in the morning to get things going again.

Kyle and the kids left this morning for Florida, which has been stressful. We knew we had this trip coming and really didn't know what to do. Without revealing many details, we had this trip and the schedule for it was not changeable. A good portion of it was paid for us so we really hated to miss it. The plan was for all of us to drive, but the neurosurgeon gave me permission to go only if I flew. So Kyle and the kids left early this morning and I am supposed to fly out Thursday and meet them there. We are supposed to be there for 5 days. It has been very questionable as to whether I will be able to go, but I want to be with the family so badly. I have missed a lifetime of activities and events these last three years and will just be sick if this doesn't work out. But I am taking it a day at a time and tomorrow we will decide if it is going to work. The good news is that today has been a better day and my stamina and eating has improved so I am really hoping it will work!

If I go I will fly home on my 40th birthday the 21st. My goal for quite a while has been to be healthy by my 40th birthday. Well, I am far from healthy but it seems like I am on my way so we are praying that that health will be something I will enjoy as I enter my 40's.

Enjoying home

It is so good to be home! We are all thankful that I am here and I am being very careful not to overdo. Landing back in the hospital just doesn't sound good at all. I am walking regularly and laying down quite a bit, too. I am so weak that it really isn't so hard not to know when to stop.

I had a huge surprise yesterday and still am in shock. A wonderful cousin that I was very close to growing up surprised me by flying in from Washington to spend several days here to help me. I haven't seen her for about 5 years but we have been enjoying each other's company like we we always have. What a surprise and a blessing to me!

Yippee!

I head out of here in about an hour! Yeah! They have taken such good care of me, but going home just sounds so good! :) Enjoy the day! We are! :)

Me again

I have the computer tonight for my last day and night in the hospital. In all honesty, my brain was just not functioning well enough before this for me to really even try to get on the computer or to have interest in it. So I guess this is a big mark of improvement for me to be here, know what I am doing and have interest in the blog or anything computer again.

Although I have many days ahead to think back on what has happened--much of which I don't remember--I just want to to take a moment to thank all of you. Wow, the prayers that have been offered on the behalf of my family and I humble me. Thank you over and over. The gift of visitors in the hospital as well as cards and emails and phone calls to help me pass each day. I am so grateful. Our family has blessed us so much. So much care and concern. My parents were here nearly every day for a while--what sacrifice in love they have shown. I am humbled and grateful to each of you for your prayers, comments on the blog and so many other expressions of kindness. I have had flowers in my room the entire stay--what a blessing that I have enjoyed so much. How to say thank you when being overwhelmed by so much christian love and expression--I don't know how and will never be able to express my thankfullness fully to all.

Now, I have one more night of sleep in the hospital bed, my pic line will be pulled in the morning, we'll go through many, many doctors orders, go home and then perhaps normalcy will creep into our home day by day until finally we can look around and think things really are perhaps normal again. Can that be? We pray that it is and I hope that you will continue to pray for that for us as well.

Good night!
Cindy

Home Tomorrow!

The neurosurgeon gave the OK for her to go home tomorrow. It will be a day for much rejoicing!!
Thank you!
Kathy

Prayers Answered!!

I talked to Cindy a little while ago and she is feeling GOOD!! She has made a 180 degree turnaround since yesterday morning! She still has alot of pain in her rib, and her head is sore, but she is feeling good and no headaches! She hasn't really eaten much yet, so hopefully that will start today. She even dreamed about pizza last night which is wonderful sign! They covered up her pic line and head, so she could have her first shower since she's been there, that always makes you feel better!! She is even talking about coming home, which I guess isn't unusual, she's been talking about that for a long time, but now it's looking like within the next day or so maybe, but no drs have said that yet.

Needless to say we are all just thrilled!!! God is answering the many prayers that have been offered up for her. Cindy has been dealing with all of this for 3 years now this month. Most of these last 3 years she has not been able to function normally or even think much. Just too much pain in the brain. We know God puts us through struggles to make our faith strong, and Cindy's faith is very strong. But we are now hoping and praying that she will be able to live a more normal life.

Again we would all like to thank everyone for all their prayers and support. It has been so needed and also so appreciated.

Thanks again!!
Kathy
(Hopefully I will get laid off from this job in a couple days!!)

Improving

Cindy did show improvement by afternoon, although she is still on both medications yet, but it was just 24 hours after surgery when I left. She did get up and walked a short distance, but no eating yet, hopefully by tomorrow. Although her head does hurt, the worst pain is where they went through her ribs, they maybe pried them open some to get the tube in the right place. She still has no headaches, and that is the most important!! She got her last batch of medication for infection this afternoon.

We are hoping and praying for a big improvement by tomorrow!

Thanks, Kathy

Wednestday Morning

I talked to Cindy earlier and she is in quite a bit of pain again and nauseated. So she is on medication for both. They took out the two valves on top of her head, ran both tubes from inside her brain down behind her right ear and joined them to one and also put the new valve behind her ear also. The tube then went down in front of her rib cage and under it and then over her liver. They did this part of the surgery laporoscopically and put an incision between the two bottom ribs so they could manuever the tube to place it. This is where most of her pain is right now. Hopefully this pain and nausea will soon be over and she can start eating again so she can come home.

This was Cindy's 7th surgery in 6 1/2 months so her body has been through so much. She was feeling so good yesterday morning and was really getting stronger which should help now with her recovery, but that poor body of hers does have a long ways to go. She also has a a very easy hairdo again, won't even need shampoo for awhile!! But that really doesn't concern her much anymore. Hair grows back!

Thanks again for all the prayers and concern.
Kathy

Surgery over

We just met with the doctor and he said the surgery went well. Cindy is in recovery yet so we have not seen her. He is hoping that she will be able to come home in a couple days, but her eating will need to improve first. As determined as she is, I'm sure she will work on that very hard the next couple days!! I'm sure alot of us wish we had that problem!! Since the surgery wasn't very invasive, there shouldn't be alot of pain, although she does have several new incisions, 4 on her head and at least 3 on her stomach and chest. He is also keeping her more antibiotics than usual just to help fight any infections. Hopefully the buzzer will ring soon and we will be able to see her again.

Thanks again for all your prayers - they are sure being answered!
Kathy

Surgery scheduled!

The surgery is scheduled for 7/7 Tuesday at 1:15. It will take a couple hours to, yes, change the valves and put in all new tubing. The neurosurgeon is just so afraid of infection and wants to take all precautions so no more will show up. They are going to put the tubing by her liver since there hasn't been infection in that area. There is too much spinal fluid draining to put the tubing into her chest for fear of pneumonia. She has been an interesting patient up in Sioux Falls, no one has been around anyone with the illnesses that she has so she has had many doctors and nurses come in and check her out. If all goes well and she can start eating better, hopefully she will be able to come home in a couple days. She has been getting "fed" each night interveanously with the nutrients that she has needed.

Please keep praying that all goes well tomorrow and she will be able to have a full recovery and be able to live a normal life again.

Thank you!!
Kathy

4/6 Monday morning

Still no surgery!!!! Cindy is beginning to think she is going to be there forever!! The surgeon had OK'd surgery for today, but the neurosurgeon doesn't do surgeries on Monday. We had the nurse go through the files, called drs but it didn't do any good. We thought it was scheduled, but she wasn't listed on the schedule, so more disappointment, but she is getting better and stronger, although some days are better than others. Her eating has to improve yet before they will release her, but yesterday that also was better. Wish I had that problem!! She was so terribly nauseated for so long, that she is still a little afraid to eat.

Mrs. Cammenga, I read your blog and called Cindy and read it to her, we each had a chuckle out of that one!

If Cindy didn't have those tubes hanging out of her with the bags of spinal fluid, I think she would try to make an escape, but she knows that wouldn't work too well and we have been reminding her of that also.

Cindy is turning 40 on July 21. She has been saying for months now that she is really hoping and praying for very healthy 40's since her 30's have been not very healthy. We are all praying for the same thing! Let's hope and pray that this surgery will be the last of the many that she has had these last years.

Let's hope and pray that surgery WILL now be scheduled for tomorrow and it will be very successful. The headaches are gone, almost too much spinal fluid drainage now since there is no restrictions.

Again, thanks to everyone for your support, prayers, emails, visits, etc. It has made this long journey much easier with your support.

Kathy

4ht of July

We had a small family picnic at the outside cafeteria today with the cafeteria food - not bad!! Cindy just enjoys having someone there, it just makes the days go faster. Today wasn't as good a day as yesterday. She's getting anxious about the surgery which is scheduled for Monday, but no time yet. She wants to talk to the dr ahead of time, only wants the tubes changed. She's just gone through so much and the valves are working, so why change them - our theory. The neurosureon from Milwaukee also said the same thing when Cindy talked to him this past week.
Cindy has just gone through so much the last three years and doesn't want to go through any more than she has to.

We read from Psalms 139 this morning, and it talks about how we are created in our mother's womb and also about how God knows our days even before we are born. We do not understand the Lord's ways but as we read in this Psalm and many others that God knows all things and they are for His purpose.

Please keep praying for Cindy.

Thank You!
Kathy

Thursday

Good morning!

Hopefully there will be a date set today for surgery. Cindy is waiting to see the general surgeon yet, he is the one that will make the final decision. Her chart says "surgery when tolerated". She did eat 2 pieces of toast last night and it went well, no nausea which is the first time she has had something to eat since the big surgery without nausea. She probably had this pancreatitis since then and the drs just didn't pick it up. It took a good nurse to figure it out last weekend, a little frustration with all of this. She is trying to walk and get stronger and is quite determined to get better and get on with life.

The good news is that she is just doing so much better and so anxious to get home and going very stir crazy in the hospital. So if anyone is going to Sioux Falls and has a little extra time, she would love it if you would stop by and visit. I don't know of anyone going there today. Karleen and Kyle and kids are going up tomorrow and we are going to have a 4th of July family picnic at the hospital outside cafeteria at noon on Saturday.

Again, thank you for all your support!!!
Kathy

It's me!

I, Cindy, am writing for the first time in a while. My mom and I were out walking around and found a computer that is available to patients so we decided to try it out.

Thank you so much for your encouraging words through the blog, cards, emails to the house & hospital, and the visits. What a blessing you have all been to me and my family as we go through this.

I am feeling much better and starting to feel like a prisoner in my hospital room so I am begging the doctors to do the surgery sooner rather then later. At this point, it isn't scheduled but they are saying next week.

I have to go--I just got the call that I am moving to room 1242 which is a room providing less care.

Thanks again!