Tuesday, June 30, 2009

Reminders and A New Set of Rules

All of you will have to help me remember what I put on yesterday's post, that life truly is wonderful. Right now, for me, life can also be very hard and tricky and it is very much a balancing act to remember to keep the good things at the forefront of my mind.

Last night and this morning I had a bit of a meltdown. My recovery from all of this is far more than physical. It is as much mental and emotional as physical. I still wake up sometimes surprised that life isn't what is was a few months ago. Sometimes I feel trapped inside my body, like the real "me" is here, but I am stuck inside a body that doesn't do what I tell it to. I have to move my lips out of the way or I bite them when I eat. I can't pick up my little Daven, or carry anything above 10 pounds. I am just beginning to walk, but I still trip and lose my balance. I still can't hear much out of my ear, nor see much out of my eye. I am not saying this to complain, because the one thing I have realized more than any other is how very BLESSED I am. But, what I am realizing is that my life has a new set of rules...problem is, I don't know yet what the rules are!

I am learning that "normal" will be something different than it has ever been before. I am a changed person, not just physically, but emotionally and spiritually as well. I feel more deeply, I love more deeply. This is what counts. The physical part is not as important in the long run, but is very hard to adjust to in the short term. I have much more empathy for those in constant pain or with long-term disabilities. I understand things now I never could have before. All of this is what really counts. Now I just need to remember that when the "little" daily frustrations of my new "normal" get me down.

I did go back to the park today and walked 1.3 miles with only a short break, so even on my "hard" days, I know I am making progress.:) And, I am getting ready to go to Girls Camp to visit "my girls" from church. I have so missed getting to see them on a regular basis. I know I am supposed to be the "leader", but I am the one who ends up learning so much from them. Can't wait to see them and visit camp...just wish I could stay!

Monday, June 29, 2009

It's a Wonderful Life....and Setbacks are Normal

So, I (Jodi) have decided that as much as I can, I am now taking over the blog. There are so many things I cannot do yet, but this is one thing I can do, and it feels a bit empowering. :) Plus, this will give me the chance to record my own perspective on what is happening with my recovery. There will likely still be posts from Tolan, my dad or sister from time to time, but I think this is something I can actually do for a while and that excites me!

I have decided that life is pretty darn wonderful. I didn't say it is perfect, but it is wonderful. This weekend I was sick again and couldn't keep any food down, clearly another "little" setback, but we all know that setbacks are part of life. But today, my mom and I were able to take the kids to the park and I walked 2 laps around the track (with a rest in between). That is 1 mile I walked, which in comparison to my "former" self, may not sound like much, but considering that 2 weeks ago today I was trying to walk 2 laps around the nurses station to convince them I was healthy enough to come home, it is HUGE progress. And, it is only 3 weeks ago that I was literally on death's door in the critical care unit at the hospital and had major surgery the next day. When I look how far I've come, how can I not feel blessed?? :) Again, it is truly a wonderful life!

Plus, both of my big kids told me today that my eye is looking better. It is still not perfect, I can't really see out of it yet, nor I can keep it open and it is still swollen, but it is getting better. Isn't life great??

I am feeling so blessed and so grateful and much of this is thanks to all of you...for your prayers, your love and support. Tears and emotions well up inside of me when I think of all of you and how much love I have felt from you. Thank you.

My friend, Shea, sent me a link to another blog that is amazing. http://www.jasonslifeisgood.blogspot.com/ is the site of a man who nearly died a few years ago when his surgery went terribly wrong. To see his outlook on life now and see the struggles he faces daily, I truly realized that no matter the challenge, we can always be strengthened by God and decide our own attitude toward life. Jason is still facing life-threatening health complications, yet he loves and cherishes each day. May we each do the same, regardless of our current situation, is my hope and prayer.

Love to all. Jodi

Saturday, June 27, 2009

Eye Progress and the Promise of Normal Life

Jodi's eye is making progress faster than we anticipated. We attribute this to all the prayers from each of you, so thank you for helping things go well. She has not gotten too much more swollen or discolored, which is a real blessing. She can only open it about 1/3 the way, but it is progress to be able to control it at all. It is still goopy and the lower lid appears very full from the collagen, but it is all still progress!

Today was Jodi's most normal day yet. She got up and gave herself a few "jobs" to do around the house. Nothing too strenuous (many of the tasks she could do sitting down, like organizing bills, etc.), but things she did all on her own. She totally wore herself out, but was so pleased to have been able to accomplish something on her own! It did take her about a 2-hour nap to recover from the morning, but she felt it was well worth it to feel like a half-way normal person again.

This afternoon Jodi was getting stir crazy again (this happens regularly since she can't get out much...if friends ever want to come and just take her for a drive, she would probably love it!!). So, the family decided to try another taste of normal life, so they all went to the mall together. Jodi hasn't been out in public much, so she was a bit nervous, but Trenden helped her walk and keep her balance, and she helped pushed the stroller for added stability. They stayed at the mall for almost 2 hours and she survived the whole thing!

She is still trying to figure out how to eat again. Many foods just no longer sit well with her, so there is much experimenting going on and she is being "forced" (by her body) to do the several small meals a day diet in order to keep anything down. Hopefully, with continued practice and healthy eating, she will start heading back up in weight.

Overall, a very good day. She continues to be grateful for all the friends, neighbors, family, loved ones and other supporters who reach out to help. Thanks again to the PCC and BYUH families whose faith and prayers have helped so much. You are all a tremendous example of faith and love.

Thursday, June 25, 2009

Surgery Updates and Bits of Hope

So, we got home so late last night, we couldn't post any photos from Jodi's surgery, but thought you might like to see her new eye "do" and hear more details from the doctor.

We knew Jodi had lost weight, but apparently, the doctor was very surprised when he did the surgery because right now her eyeball and her eyelid don't even touch. This is very unusual and happens when people lose a lot of weight under extreme circumstances. Her eyes are very sunken in and so even with the surgery, the lids don't close all the way, but part of this is because her eyes are quite sunken in right now. The hope is that when she puts on weight, her eyes will close normally, from corner to corner. (Right now the inner corner by the nose doesn't close completely because her eye is too far in.)

This image is from right when we got home last night. Jodi was still out of it and not feeling well. There were drops of blood on her face, but we did get her cleaned up before bed.

This is from today when Jodi woke up. The doctor said the swelling and the discoloration will be the worst probably tomorrow and Saturday, then things will start to get better.

You may not be able to tell from the photo, but the incision was made by scapel (jodi knows this because she was awake for the surgery) right in the crease of the lid, which will help hide the scar. Normally the gold bars (which go both horizontally and vertically on her eye) are not visible, but the doctor said they may be on Jodi until she gains some weight back. We will have to see when the swellling goes down.

Tonight her eye is more swollen and looks "goopy" but doesn't feel as badly as she expected. In fact, most of the day she has felt pretty good. She ate several small meals and kept them all down, which is huge progress. She is feeling more hopeful today than in quite some time. Now that this hopefully last procedure is over, she is finally feeling like the real recovery process can begin.

On another good note, she woke up the other day and found she had more use of her mouth. Right after surgery she had use of only about 10% of her mouth. After this latest increase, she is up to about 65 - 70%. She still can't smile normally, but she is biting and chewing better and can even spit out her toothpaste (a little). So, it may seem like a small step, but it represents big progress and continued hope for the future!

Jodi continues to be amazed by and grateful for all the help and support. She loves you all dearly (even those she hasn't met) and wants to thank you for continuing in your support of her "adventure".

Wednesday, June 24, 2009

Surgery #4

Compared to what Jodi has been through in the past month the surgery today was minor. However, it still wasn’t fun. Her appointment was at 2:30pm but she didn’t actually get into surgery until after 5pm. She had to fast all day and by the time she got into surgery she was feeling quite hungry and weak. They sewed a gold weight into her eyelid and injected colagen into her lower lid. The purpose of the surgery was to help Jodi close her right eye. With the facial paralysis not being able to close the right eye has been her biggest frustration. Also, testing showed her cornea was getting damaged.

The doctor said the surgery went well. She doesn’t look too bad at this point though her eye is puffy. The doctor said the swelling won’t peak for a couple days and then will slowly diminish over the next two week. He said by tomorrow or Friday she will look like she was punched in the eye.

We didn't get home until after 8pm and Jodi is still feeling pretty lousy from the anesthesia and is feeling like she wants to sleep. I suspect she won’t feel very good for a couple days. The doctor assures us that everything he did today is reversible and once Jodi’s facial nerves start functioning again the gold weight can easily be removed. Hopefully that day isn’t too far off in the distance.

We’re just hoping Jodi won’t need any more surgeries and can focus on making a full recovery!


Tuesday, June 23, 2009

Surgery Tomorrow and Facial Twitches

A quick update on things. Jodi is starting to feel better, so thanks for all the prayers! She has kept food down today for the first time since Friday! That is huge considering she is going into surgery tomorrow and needs all her strength! She has withered down to a mere 98 pounds, with literally nothing to spare, so she needs all the food and energy she can get.

Jodi is on the surgery schedule, but not until 2:30 in the afternoon. She was hoping to be earlier in the day, since she has to fast all day and is already feeling so weak. She talked to the schedulers, but there are diabetics and small children that take priority, so like it or not, it will be late in the day. She really hopes the surgery will help her eye to close and eliminate many of the challenges she is now facing.

On another good note, Jodi has been having "facial twitches" in the paralyzed side of her face, which internet research says is a good sign. This most often happens when she is "massaging" her face with a washcloth to wash it at night before bed (since she can't splash water on her face because her eye won't close). Her friend, Suzy, and Suzy's mom, Bev, gave Jodi lots of great advice on facial massage and diet that she hopes will help. They have had plenty of practice since Suzy's dad had Bell's Palsy twice and these things seemed to help his recovery. So, Jodi is excited to start the massage to see if it helps.

She is off of many of her medications (to help with her stomach sickness) and is actually feeling better today than since she has been home. What a blessing! Thanks again for the prayers! She did go to the store today (one of her first public outings) and it wiped her out, but the fact that she even felt up to trying was a big "baby step" toward good progress.

Thanks and more thanks for the visits, calls and prayers. Jodi is still very tired and weak, so she is not able to visit as much as she'd like, but in the little doses she can handle it, she appreciates visiting with all of you that she loves so much!

More prayers for surgery day with high hopes of improvement by this time tomorrow!!

Sunday, June 21, 2009

Appeal for More Prayers


I just arrived back in Hawaii and spoke to Jodi by phone a few moments ago. She asked me if I would update the blog tonight with an appeal for more prayers. Jodi has felt sick much of the weekend and most particularly today and she feels as though her strength is waning. We think this may be, in part, due to the medications she's been taking since she left the hospital. Some adjustments are being made in that regard, which we hope will help.

She is genuinely concerned about going into another surgery on Wednesday, even on an out-patient basis, with the sickness and increasing weakness she's been experiencing.

Jodi is asking if you could please pray for her to receive an increase in her strength and well-being as she prepares for Wednesday's surgery.

Thank you again for your special love and caring and your continued prayers on Jodi's behalf.

With much appreciation,


Saturday, June 20, 2009

Who is the Blogmaster anyway??

It seems it was much easier for blogs to get posted when Tolan and my dad, Von, had quiet, unending hours in the hospital than now, when the rigors of daily life have resumed. While we all much prefer the environment at home it is harder to find the time to make updates on Jodi's status. So, today, I (Jodi) am doing my own status update. :) It is one of the few things I can actually do on my own, so here goes.

Life at home is far superior to life in the hospital. The environment is better, the food is waaaay better, and I am surrounded by people I love all the time. However, some things are difficult, too. I am able to do far less than I pictured when I imagined "being home" in my head. I am not walking very well (because I am still very weak and my depth perception is way off because of my eye) and I have very little energy. I still sleep for about 9-10 hours a night and 2-4 hours in the day. Tolan commented today that my schedule is much like little Daven's, only I sleep more in the day! :) I can sit at the computer for a few minutes at a time, so I am attempting to catch up on everything that has been going on and on all the emails I received while I was in the hospital. Thanks again to all who have been so supportive. Truly, I could not have made it this far without your support.

We are still on schedule for the next surgery on Wednesday for my eye. I am optimistic about the prospect of being able to close my eye again. That will be wonderful. I am more realistic about the surgery itself and I realize the recovery will likely be more than the doctor indicates. (I don't think most doctors have ever had their procedures done on themselves!!) I am going to talk to my friend Jodi Carlson soon to find out what it is really like, since she has already had this procedure done.

That is it for today. Thanks again for the visits, calls, cards, etc. Sorry if I am sleeping when you happen to drop by, which reminds me, time for another nap. :) Love to all. Jodi

Thursday, June 18, 2009

The Art of Blinking - Surgery, Gold Bars, Eyelids and Collagen

Jodi had an appointment with Dr. Kim, an optomologist at Moran Eye Clinic, which is right by the hospital where Jodi stayed for 34 days. As you know, one of the effects of the original tumor removal surgery was that Jodi has been unable to blink her right eye. The muscle pulling it up works great. The muscle that pulls it back down doesn't. So she has been putting ointment in her eye to keep it moist. The eye patch has also been used to slow the loss of moisture. At various times we've tried taping it shut in different ways to protect the eye. None of those methods have worked very well.

Dr. Kim said during the examination today that her cornea is damaged. She's been given some medication that should help heal the damage. That alone won't be enough, however to protect it long term. Her eye needs greater protection.

Sherri has experimented with about a dozen types of eye patches to better protect Jodi's eye. It's a tougher than expected process. It's been interesting that no one in all of this has provided an effective eye patch that really works. Jodi wants to design one that does all of the things necessary for anyone suffering from a similar condition. Then she plans to sell them to hospitals and eye clinics to relieve others of the problems she's encountered. Maybe this can help pay for her medical bills.

Anyway, next Wednesday she'll be going back to the eye clinic for surgery. This will be surgery number four. She will have a 1.4 gram gold bar (the body tends not to reject gold and it is heavy so that's why it is used) inserted into her upper eyelid, so it will close. She should be able to blink, because the top muscle should be strong enough to pull the eyelid back up. She will also have her lower lid turned inside out, cut open, and have collagen inserted. This is because even with the gold bar the top lid won't reach all the way to the bottom of the eye. Adding the collagen will make the lower lid large enough that when the upper lid closes the two will meet and therefore create a total blink that covers her eye completely. This is necessary because the lower lid has lost its muscle control and has sagged. Assuming the muscle comes back later the collagen will be absorbed into the body and shouldn't leave it looking unnatural.

Sounds like fun, don't you think? Well, compared to what Jodi's already been though this doesn't seem all that bad, especially if it gives her something resembling a "normal" blink.

Otherwise, Jodi is improving...yes, still with a ways to go, but she is resting, eating, moving around carefully and in measured ways, so she can gradually regain all of what she's lost.

She feels upbeat most of the time and it is such a blessing to be home with her family again. It is a reality, however, that she is weak and gets exhausted easily, while needing frequent naps. This is difficult in part because when she got home she wanted to get back to normal as quickly as she could. She's just not able to do much at all yet on her own. It's become apparent that she has to be careful not to overdo it...that means not even sitting up too much, not walking too much, not staying awake too much, not doing other things that tax the body and deplete her energy level.

With all of this, Jodi and all of us continue to appreciate the blessings you bring into her and our lives through your continued expressions of love and caring.

Jodi has been asked by many if we are going to keep the blog going with regular updates on her progress. The answer is "Yes!". We'll be sharing this responsibility and while posts won't always be as frequent as they have been in the past, we will continue to share Jodi's journey, including the natural ups and downs and surprises she faces along the way.

Tuesday, June 16, 2009

So Good to be Home!!

Yesterday was a wonderful celebration and we were all amazed at how long Jodi kept going. She may have overdone it a bit, as she slept for over 10 1/2 hours last night!! (Of course, that could also be because she finally had a night of uninterrupted sleep!)

Today was a good day for her, but she was still exhausted from her big day yesterday, so she did a lot of sleeping and resting. We all think she may have unrealistic expectations for her recovery, as she had already created an agenda for herself of the things she wanted to get done. However, after getting worn out from just washing her hair, she quickly realized the agenda had to go.

Jodi has been told she can get her craniotomy incision wet, but not "soak" it for fear of infection. She was so proud of herself for coming up with a creative way to get clean without soaking half her head, but she forgot one little detail... As the soapy water fell over her face, she realized she couldn't close her right eye (like she normally would) so her eye burned and got irritated from the water. Still a small thing, but big enough to encourage her to call and make her appointment with the Moran Eye Enter. She will go on Thursday, then hopefully have the procedure done next week to insert a gold weight into her eyelid so it will be able to close.

A good first day at home.


Monday, June 15, 2009

Day 34 - Released from the Hospital - Home Again! Home Again!

A sign made for Jodi by neighbors and friends when she left for the hospital on May 13. She was so sick that morning she didn't get to read it. She read it today when she arrived back home. She had tears in her eyes as she thought about the wonderful people who were reaching out to her from the very beginning.


It's really true! After "only" 34 days, three surgeries, hundreds of doses of morphine, valium, Loritab, etc., hundreds of "pokes" for blood samples, shots and IV's, untold setbacks and complications, countless ups and downs, all combined with thousands of prayers, thousands more "well wishes", and fasting and faith that reached to heaven, Jodi was released from the University of Utah Hospital at 1:00 p.m. today and was welcomed home by neighbors, friends, and family...all of whom have been angels throughout this ordeal! You should have seen the road leading up to Jodi and Tolan's home. It was lined with signs, balloons, yellow ribbons and people extending the warmest of warm welcomes! It just couldn't have been better!

Enjoy some of the pictures from today's journey below and stay tuned for the rest of the story!

The hospital room "board" that gave the estimated date of discharge. This date was changed every day until today, because they were always wrong!

Nurse Kristy taking out the last of the IV's this morning. She was one of the choice nurses who took such good care of Jodi.

Stanley helped keep Jodi's room clean and brightened the day with some of his stories.

Jodi going to take her final shower in the hospital and looking forward to changing from her hospital gown to her own clothes. Sorry, I didn't get the "after" picture with her coming out. I drove to Jodi and Tolan's home to prepare for the "Welcome Home!" That means I didn't get a picture of her coming out of the hospital either. Sorry!

One of the many signs that decorated the house, yard and street!

Another one of the signs waiting for Jodi.

The yard, the house, and the streets were filled with balloons, signs, ribbons and people by the time the preparations were completed.

Kevin and Scott, two "Living Scriptures" salesmen who were just walking by. They asked if they could help with anything. Sherri said, "Can you blow up some balloons?" They came in and blew up 40 balloons. Pretty kind of them for sure! Sherri did give them some lemonade in return for their efforts.

Some of the "Welcome Home" crowd.

Jodi being greeted home by a few of the many!

Hugs and kisses!

A warm hug for and from Cindy Taylor!

A special greeting from Cami Hall.

Another hug...this one from Andee Sanders.

Trenden and Lindi with cousin Trent and a few of the balloons that had been a part of the welcome home.

Kim Schneider's tight hug.

The hugs keep on coming. This one from Belinda Jackson. Thanks, Belinda and everyone for all the balloons, ribbons and signs along the street, too!

Treats from the Jackson kids that spelled out "Get Well Soon".

Visiting in the decorated living room.

Some of the cards, flowers, and pictures given to Jodi while she was in the hospital.

Jodi with Daven and Lindi in their own home.

Daven trying on Mommy's eye patch.

Jodi, Tami, and Sherri enjoying the out of doors.

Jodi and Tolan asleep on the living room couch...so much more comfortable than anything at the hospital.

Sunday, June 14, 2009

Jodi Gets to Go Home on Monday

Jodi's progress has been so significant the last few days, especially today, that all of the doctors agree she can go home tomorrow. The plan is for her to be released from the hospital sometime around mid-day. Jodi and Tolan are looking forward to a real "homecoming."

Jodi asked me to share with you the following, "Thank you so much for your amazing support and for your prayers and fasting over such a long period. I can't begin to tell you how much you mean to me and my family. I would be so grateful if you could please continue your prayers tonight so I can finally go home tomorrow! Even though I am getting out of the hospital, I know there is still a long recovery ahead, but with all your support, I know I can make it and I know my family will be okay too. I look forward, over the next few weeks and months, to expressing my personal appreciation to each of you! I love you all!"

We will continue to keep the blog updated for the rest of Jodi's journey. Thanks again to each of you!

Enjoying Life Again

Tolan and Jodi beginning to really enjoy life again! Double click on the picture and see the enlarged version. This is the most natural smile Jodi has had since May 13, the day of the first surgery. If things keep going like this then tomorrow really ought to be the day!

Climbing Stairs & Eating Sitting Up

Jodi climbing steps for the first time in over a month...weak leg muscles, but no huge headache! This was a great accomplishment!

Jodi sitting on the couch to eat, instead of from her bed. This is also a first since coming to the hospital.

Fen (nurse from Taiwan) who has taken superb care of Jodi over the past several days.

Eric, the food man, he's constantly trying to find Jodi something she likes to eat. He's always pleasant with a big smile on his face.

Hospital Stay - Day 33 - Real Steps - Real Progress

Jodi had a good's night's rest. She's eaten quite a bit and continues to feel hungry between meals. She's taken a shower (sitting down), by herself, including washing her hair. Tolan dried and combed it.

With Tolan on one arm and me on the other, Jodi has made it around the big loop of nurses stations on the floor from NACU to IMCU and back two different times. She's also sat up on the couch for about 45 minutes.

Right now she is resting from all that exertion, but she has done very well. She's rating her headache at a '4' on a 10 point scale. Of course, that's with the aid of the Loritab, but that's always been the case.

All-in-all, she is doing very well. Could tomorrow be the day she is doing well enough to actually go home? If this progress continues it could very well be!

Saturday, June 13, 2009

Hospital Stay - Day 32 - Hungry

Jodi's progress today has been a little slower than the last two days, but she has been up twice for short periods. She'll try to do more as the day progresses.

The best sign of continued recovery is that her appetite continues to improve. She woke up feeling hungry and so far today has had some Honey Nut Cheerios, Cream 'o Wheat, Salad (one that tasted like it came from the outside with olives, baby tomatos, shedded turkey, cucumbers, lettuce, and salad dressing), and some home-made bread with butter. All of it tasted good to her. That's meaningful, because one of the effects of all of this have been that her taste buds haven't really been working and things haven't really tasted very good in the past. She has been trying to eat just because she knows she needs to get her digestive system back up and functioning, but today the food has actually tasted pretty good.

We had a long talk with Dr. Sara Gardner (one of Dr. Couldwell's team) today and she indicated that Jodi can go home when she is healthy enough and strong enough to function to a certain degree on her own, including being able to get up and walk on her own. So far she's not there yet, but she'll just keep working at it until she is.

Jodi wants to thank a "far away" friend who came to visit and Grandma Brown for taking such good care of the kids. She also wants to wish Grandpa Brown a Happy Birthday. She hopes Tolan or someone will pass this along to him, since she's not sure he'll be checking the blog.

Friday, June 12, 2009

Finishing Up Day 31 - More Steps Forward

This afternoon and tonight Jodi has continued to do well. She's eaten more and kept it down. She's been up more and been able to stay on top of the head pain. She's spent more time feeling relatively good than in a long time.

She asked her Mom to treat her like she was at a salon (see picture below). She wanted to relax somewhere besides the bed ( see picture below). She appreciated the delivery of more flowers and gifts, including homemade bread. She enjoyed more visits from neighbors and calls from family and friends. She, as always, enjoyed the comments on the blog and so appreciates the continued prayers and fasting of so many, including the fasting by those for whom this is a new experience.

All-in-all, it has been the best day in quite awhile. Dr. Couldwell came by tonight and told Jodi that she could go home as soon as she felt good enough and strong enough to do so. He thinks the headache problem will correct itself as she is up and about more and more.

Just a moment ago Jodi said, "I'm hungry! What is there to eat!" Wow! Her appetite is coming back. That's a good sign too!

So, we'll see how tomorrow goes and take things from there.

Tolan said he had a great time at Lagoon today. The kids had a ball. Tolan got a little nauseated going with Trenden on all the rides...not an unusal price to pay for a wonderful day with your kids. Right now Jodi is talking to Casen about how much fun he had at the amusement park today.

It looks like it was a good day for the whole family. Hopefully, it won't be long before they're having great days together.

The University of Utah Hospital "Salon". Jodi having her eyebrows plucked. Ummm! I guess this helped her to feel better. She acted like it at least.

Jodi resting on the couch by the window. It's been a long time since she's done this. It felt great to just rest somewhere besides in her bed.

Hospital Stay - Day 31 - Baby Steps

After a good beginning yesterday and then a real tough day in the afternoon and early evening, followed by some progress right at the end of the day, Jodi had a pretty good night and has done quite well today.

She's had a few bites of scrambed eggs and some juice and Ensure for breakfast. She's been able to incline her bed to 30 degrees and handle it. She has been up and to the bathroom, with help, but she did it. She also went for a real walk, with help again, but it was important for her to do. I know you've heard this before and seen pictures before, but all of those were over a week ago and before this last surgery. She's had to start at the beginning and do it all over again. So today, thus far, is a day of noticable progress...maybe they are "baby steps", but they are real and are promising.

Now we are praying they continue without the pattern of the past and a drop back down later. We hope she just keeps climbing upward from here. Whatever it takes she will do...as much with your help, encouragement and support as with her own natural optimism and determination.

Oh, the doctors are still trying to determine why her headaches continue. They may do an MRI today to see if the area where she had her last lumbar drain is leaking under the skin. If so, they may do another "blood patch" to try and seal it. In the meantime, the plan is for her to keep stretching herself with enough activity to move forward without going too far, too fast, and creating a problem.

In any case, things right now are looking up.

Also, Tolan is at Lagoon (an amusement park) with the kids today. Since they missed out on their planned trip to Disneyland and Hawaii, he is treating them to some fun.

Jodi wants to thank everyone again for their prayers of support. She's been hearing from childhood friends and high school friends she hasn't talked to in years and that has really been a blessing to her.

Jodi taking the "baby steps" needed to get back to something closer to normal.

Jodi resting after those "baby steps" before she is wheeled back to her room.

Jodi appreciated a visit today from her Grandma and Grandpa Ketchum.

Thursday, June 11, 2009

Prayers Needed & Prayers Answered

Right after I posted the last update Jodi took a dive with a spiraling headache and churning nausea. For hours she didn't move. She didn't talk. For part of that time she was in a medication induced sleep. When she was awake she was absolutely misable.

Finally, about two hours ago, she asked Tolan and me if she could have another blessing. In part, the blessing said that the Lord was hearing the prayers of the hundreds who were appealing to Heaven on her behalf. She really needed those prayers. The blessing also said that there were those who had been "assigned" to attend to her needs. It felt like those words referred to caring people on both sides of the veil.

Immediately following the blessing Jodi perked up. Two couples then appeared at the door to her room. They brought with them light and life, encouragement and hope, kindness and caring. The downward fall was reversed. The misery was curtailed. Prayers were answered. We then read all the latest comments on the blog. Oh, yes, those "assigned" on both sides of the veil had once more come with healing balm from on high.

And so the journey continues with steps upward, falls downward, and angel-assisted climbs upward again!

You are those angels! You are the answers to our prayers! May the God of Heaven bless you the way you have blessed Jodi and each of us!

Right now the nurse is taking out Jodi's old IV's and putting in new ones. Each is only good for about a week. They aren't actually being used anymore, but are there just in case. After this Jodi hopes to get some much needed rest.

Jodi wants to express her deep appreciation to Grandma Brown for taking care of the kids this week, which has allowed Tolan and Jodi's Mom to be with Jodi in the hospital.

Thanks, too, for those who have shared links to websites with inspiring stories, inspiring music, and needed advice.

Thanks again, to those who have never met Jodi, but who join with family and friends in providing encouragement and offering prayers. You, too, have been an inspiration to us.

Hospital Stay - Day 30 - More Small Steps

Jodi had a restful night's sleep and felt quite good this morning. While the headaches continue and she has to be careful not to try and do too much, she is trying to push the limits as best she can in hopes of accelerating her recovery. She has gotten up to go to the bathroom again. That's good.

She also took a bath for the first time in 30 days. Sherri had to help hold her head in the right place to keep the headache down, but Jodi loved being immersed in the warm water and really getting clean. The hardest part was actually the "ride" in a chair to and from the room where the bathtub was located. She was sitting up at an angle that spiked her headache, but as she layed back down it was tempered again. Of course, she is still on pain medication (Valium), but is taking it in pill form rather than through an IV. That's good too, because she'll need to be able to handle medications in a pill form when she returns home and it's important for her system to be able to handle it. Jodi has been off the IV completely since last night.

She's also testing the limits on what her stomach can handle without getting sick. She is still on the nausea medicine, but some things sit better on her stomach than other things. We've learned that Ensure works, as does Jamba Juice, grape juice and other juices. Solids are tougher for her to take. She's had small pieces of cheese, French bread, turkey, and mashed potatoes, but these can't be tolerated as well and so she'll take just a bite or two.

Oh, we forgot to tell you that she got her 2nd round of staples out yesterday afternoon. It only hurt when they took out the ones that had gone through her ear. Anyway, her double incision area is looking much better and isn't nearly as swollen as it once was. You can see a picture below.

Jodi enjoyed talking to her sister, Kristi, a few moments ago on the phone and wishing her a Happy Birthday. She's been enjoying the soft refrains of music in the background, complements of another angel who has reached out to her.

She's also looking forward to Tolan coming to the hospital. He had important meetings all day at O. C. Tanner and won't be able to be here until after 5:00 p.m. She's missed him. Everything is better when Tolan is here.

Right now she is resting...the jaunt to the bathroom and taking the bath tuckered her out. Maybe Tolan will be here when she awakens. That would be good too!

Jodi getting situated in a new kind of "wheel chair" that is actually one of the nurse's office chairs.

Wheeling into the bath/shower room...pretty fancy mode of transportation, don't you think?

The warm bath is awaiting, but it's quite the operation just to get there and back!

Jodi's newly washed hair and her double-cut, double-stapled incision...getting better!

Wednesday, June 10, 2009

Small Signs of Progress

When there are a long series of experiences that build hope and then squash it again and this happens over and over there is a tendency to look for small signs of progress, reasons to keep hoping, reasons to keep trying, reasons not to give in to discouragement or fear or pain or suffering. Today was such a day!

This afternoon and this evening there were some of those "small signs of progress." The first was when Tolan arrived from work. Jodi responded immediatley to his presence. See the picture below. Tolan is, as most of you know, a little bit crazy. He thought Jodi would be better off if he jumped onto the hospital bed to keep her company. He did! She said, "Wait! Wait! WAIT!!! You are on my IV's!" That got fixed and then she said, "Wait! Wait! WAIT!!! You are squishing me!" That got fixed then she said, "That's good!" That is when I snapped the picture.

The next was Jodi asking Tolan and me (her Dad) for another blessing. It was beautiful and encouraging. Tolan was the mouthpiece and spoke under inspiration.

The next was Jodi saying she was hungry...even though she wanted to be very cautious given all the nausea and vomiting of the past several days. She's now had two cans of Ensure, some fresh raspberries, some grape juice, some apple sauce, some water, and some Rachel's Exotic Cherry and Black Currant yogurt. Not a lot, but she's kept it all down. She has had enough to drink that they are going to take her off of the IV, because they think she is hydrating herself sufficiently.

The next was the willingness to try to go to the bathroom...that is to get up out of bed and walk (for the first time in a week). She did. It hurt her head and she was a little dizzy, but she did it and she was glad she did.

The next was when Jodi wanted me to read the comments that had been posted to the blog since yesterday. I read them all to her...dozens...trying as best I could to imagine the way the authors might have wanted to say the words themselves if they had been standing next to Jodi. She smiled. She laughed. She cried good tears. Then she said, "This is always the best part of my day...hearing the comments from the blog! I love these people, even the ones I don't know! It's all so amazing!"

The next was Jodi saying, "I think I need to rest. I need to sleep." That's what she has been doing for several hours now...peaceful sleep...not like the past several days where the expression on her face was one of pain...but rather a look of peaceful, quiet, comfortable sleep. We pray she enjoys that type of sleep through the night.

So yes, with the many ups and downs, we look for small signs of progress and they are there. We are grateful! We continue to be grateful that each of you have been, for so long, part of those signs of progress. You see, it is true. Hearing what you say is the favorite part of each day! Thank you again...from Jodi, from Tolan, from all of us!

Tolan keeping Jodi company and Jodi loving it!

Hospital Stay - Day 29 - Headaches, Nausea, Weakness

Right after I posted the update last night, Jodi had a vomiting spell. She lost everything that she had been able to eat and drink yesterday, which wasn't much in the first place. She has gone a week now with very little nourishment. She's basically surviving on the IV. She was in pretty rough shape late last night, so Sherri stayed with her all night. Right now, Sherri is asleep on the couch in Jodi's room.

Today, the headaches continue unabated. The nausea is also continuing. She is very weak and only moves when she has to go to the bathroom and then she's not going to the bathroom. She either uses a bed pan or a portable potty placed next to her bed. It's hard in either case, because the headaches are so strong, even though they aren't the spinal headaches, they are still punishing in their effect. She is still receiving valium for the headaches.

She is having spasms in her neck. We're alternating heat and ice in hopes of reducing those spasms.

They've taken her off of the three strong anti-biotics as of 8:00 a.m. this morning. The anti-biotics were contributing to the nausea. We're hopeful there will be a gradual improvement now in that arena. She continues to receive nausea medicine, but Jodi whispers that she is "gun shy" and hesitant to try much of anything, because she hasn't been able to keep anything down.

It seems that the cumulative effect of three surgeries in such a short time have taken their toll. The feeling currently is that these after-effects should begin to lessen today or tomorrow.

Jodi is very weak and literally only whispers when she speaks at all.

The "bouncing back" from all of this is a longer and more difficult process than we had anticipated or hoped. We're still expecting improvements today and tomorrow. We'll keep you posted.

Tuesday, June 9, 2009

End of Day 28 Update - Improving, but Still with Headaches

As of right now, Jodi has occupied eight different rooms on three different floors of the hospital. She's now in Room 2, back on the 5th Floor, where she has also been a resident in Rooms 1 & 5.

She's been treated and attended by dozens of doctors, nurses, and aids...nearly all of whom have been superb!

While she is doing better today than yesterday and considerably better than Sunday, Jodi continues to suffer significant headache pain. These are not, spinal headaches, however. They are "throbbing" headaches, as she describes them.

We think they are primarily as a result of laying basically flat for the last 5 days. Jodi can tell the difference and is grateful these are not spinal headaches. Still they are painful and they make it difficult for her to move or get up. She's had her bed inclined for a portion of the day, but she could only take it in small doses.

She can't breathe out of her nose, because it is still plugged from the drainage (blood, etc.) from the surgery, so her mouth and lips feel dry all the time. She needs to keep sipping on water to moisten the inside of her mouth.

She has slept a lot today, which has been very much needed. She also got out of bed (to go to the bathroom --- actually she used a potty chair placed next to her bed), which was the first time she's been able to do that in almost a week. She ate a little pasta for dinner...a small portion, but at least she received something more substantial than the IV fluid. Oh, she also drank a whole can of Ensure.

We just read all of the comments left on the blog for the last two days to Jodi. She really appreciated every one. This is her favorite activity. Thank you so much!

Right now the doctors are targeting Friday for Jodi to be released. Hopefully, she'll make a little progress each day so that becomes possible.

Hospital Stay - Day 28 - Doing Better

Jodi is doing better since yesterday's surgery. She is still in pain and sore, which are after-effects of the surgery, but she hasn't had a spinal headache and thus far there is no sign of spinal fluid leaks.

She thinks she would have had a reasonable night's sleep if only they had not come to take blood three different times during the night...at 2:30 a.m., 4:00 a.m., and 6:00 a.m. They took a total of seven vials. We don't know why so many blood samples and why they disturbed her sleep so many times. Otherwise the doctors, nurses, and aids have been doing a wonderful job.

They want to move Jodi back up to the 5th floor from the ICU today, but all of the rooms are full, so we don't know what will happen yet.

Jodi is hoping to get a bath or shower today. It's been a long time. They also want to start getting Jodi up to test how she can handle it. They'll start slow and work up to more. They want to start giving her some food. She hasn't really eaten hardly anything in several days. She's feeling hungry though and that's a good sign. Riht now she is trying some Cream 'o Wheat.

We are all hoping and praying that from this point on Jodi will be experiencing the recovery that all have been praying for. Thank you again for the wonderful blessing you are and have been to Jodi and to all of us.

Below are some before and after pictures from yesterday.

Preparing for surgery.

Tolan testing the 100% oxygen Jodi had been on all Sunday night to reduce the air pockets that had formed around her brain.

Jodi recovering from her 3rd surgery. She was feeling very cold "everywhere", so the nurse heated up a blanket to put around her head. Note all the IV's she had going.

Monday, June 8, 2009

Done with Surgery

Dr. Orlandi just came out and spoke to us. He said the operation was more difficult than normal because her septum was a bit crooked and he had to straighten that out before he could do the procedure - meaning she will be extra sore. But he felt like the procedure went well and she will most likely be leak free at this point. He said it’s possible she could spring a leak soon or in the weeks ahead, but unlikely. In spite of the fact that Jodi has defied all odds to date we’re hoping she won’t defy the odds this time! If she recovers well and there is no sign of leaking she should be able to go home in a day or two.



They just took Jodi into surgery. We had the chance to ask Dr. Orlandi a few questions before they went in. He stressed that the procedure he is attempting is something experimental that he and Dr. Shelton wrote a paper on and has only been done about six times. The advantage over the traditional approach through the ear is that some hearing is preserved with this procedure. He also mentioned that it is very difficult and an attempt to teach another doctor the procedure failed due to the complexity so he is currently the only doctor doing it. Apparently the trick is working in such a tiny space with a needle and it can take between ½ hour up to 2 ½ hours – the variation is due to the differences in each person’s sinus passageways. He also stressed that this procedure is permanent. He also mentioned that down the road if the CSF leak eventually heals itself there MIGHT be a possibility of adding a tube to her ear to help her equalize the pressure – like they often do for children.


Pneumocephalus Doing Better – Preparing for Surgery

Jodi is doing better today. Frankly, last night was scary to watch. I have never seen her like that before. She was in so much pain it seemed for a while she couldn't keep fighting. I was quite worried. She had oxygen all night and is feeling much better. Dr. Couldwell isn’t as concerned about the air pockets at this point. He checked her for leaking and the CSF leak continues so we’re going to proceed with the surgery to tie off the Eustachian tube today, which is scheduled for noon (in hospital time that probably means about 4pm). The doctor performing the surgery is Dr. Orlandi and he will go in through the nose, a procedure he specializes in. As he described the procedure, it will be permanent, is delicate and technical, but the recovery should be quick. He said the way he will do the procedure – going in through the nose instead of through the ear – should preserve “some” hearing in that ear but it will feel plugged and be muffled. Had Dr. Shelton performed the surgery through the ear Jodi would have lost all hearing in that ear so this seems like a better option. Since it will be permanent we’re hoping it won’t be too frustrating to deal with long term. Hopefully it will solve the pesky CSF problem once and for all and Jodi can go home in a day or two.



A CAT scan at about 9:30pm this evening revealed that Jodi has pneumocephalus (air on the brain). Apparently it’s very serious, and a likely contributor to the severe head and neck pain Jodi has been experiencing. She has been unable to move her head at all so she hasn't eaten for a couple of days. She has been throwing up from all her medications, which has just mad things worse. They’ve moved her back to the Neuro ICU for closer monitoring and she is receiving 100% oxygen through a face mask, which is supposed to hasten the air pocket absorption... as it was explained to us. Jodi’s mom had planned to stay the night with Jodi but since she is moving to the ICU they may not let her stay. We hope this will help her get better because she is not in a good place now. This is the worst I have seen her yet.

Jodi’s dad Von is catching a redeye flight tonight and will be back in town in the morning (he just left us Friday so he wasn’t in Hawaii long). We will post more about Jodi’s condition as soon as we learn more.

A special thanks to all the folks at the Polynesian Cultural Center! A care package arrived from Hawaii full of goodies and also containing a touching DVD. Jodi hasn’t felt well enough to eat any of the treats yet but I must confess that I opened the mango slices with the intention of only eating one or two and ended up polishing off the whole thing! Jodi got feeling good enough for a little while this evening to watch the DVD and was extremely touched. She shed lots of tears but they were tears of gratitude.

Thanks and mahalo!


Sunday, June 7, 2009

DAY 26 – Waiting

Jodi felt better for a while last night while the lumbar drain was closed and enjoyed some nice visits, though she couldn't get out of bed or even raise her head much. Once they started the drain again the terrible headaches resumed, accompanied by vomiting that kept her up all night.

This morning the drain was closed again and has remained closed all day. Jodi has been complaining about neck stiffness and pain, a symptom of meningitis, so they drained some fluid for testing and the results were negative. As a precaution the doctors have put her on a cocktail of three antibiotics so she currently has four IVs going. She’s pretty miserable and really looking forward to feeling better. With the drain closed we don't understand why she is still doing so poorly.

The plan is to check for nasal leakage in the morning and if the leak continues we’ll proceed with the operation to close the Eustachian tube sometime tomorrow and hope that solves the problem.


Saturday, June 6, 2009

Hospital Stay - Day 25 - Headaches continue - Tolan with the kids - celebrating college graduations

Today is Jodi's 25th day in the hospital. The original plan was for a 4-5 day stay. It has been a long road with many setbacks and many blessings.

Jodi's spinal headaches continue non-stop. The pain medications continue as well. They help, but Jodi basically is laying flat with no head movement to keep the pain within bearable limits.

If the body doesn't heal the CSF leaks on its own then it looks like additional surgery will be required, as Tolan mentioned earlier. We pray this won't be necessary. This next surgery would take away Jodi's hearing in her right ear permanently and make it feel like her inner ear is filled with fluid...always! It's not a pleasant thought.

Sherri (Jodi's Mom) is with Jodi in the hospital today, so Tolan can spend some time with the kids. He hadn't seen them since last Sunday.

I flew back to Hawaii yesterday to attend the BYU-Hawaii graduation. Jodi's brother, Brandon, is graduating today. Sherri is graduating from BYUH today too, but instead of being in Hawaii for commencement she is staying with Jodi in the hospital in Utah. Jodi and her children were scheduled to be in Hawaii today, along with most of our family for this special occasion. Those plans, of course, all got changed, but Sherri is in the right place by Jodi's side. We just want her to know that we are celebrating her accomplishment along with Brandon's. As we do, we are offering special family prayers for Jodi, Tolan, and their children.

Thanks again to all of you for your continued prayers and support. How can we ever adequately communicate the depth of our appreciation?

With love and gratitude,

Von (Jodi's Dad)

Friday, June 5, 2009

More of the Same

Well… Jodi is back on the lumbar drain. The plan is to drain off more fluid (currently 15cc/hr) and hope the leak fixes itself. The spinal headaches are intense right now if she elevates her head even a little bit so she isn’t getting out of bed at all at this point. If the leak isn’t resolved within a few days then sometime next week a doctor will go in through the nose and seal/plug the eustation tube.


Thursday, June 4, 2009

A Disappointing Day

We had hoped to go home today but instead Jodi spent the entire day in bed due to the spinal headaches. She couldn’t even lift her head off her pillow to eat or drink much. This afternoon Dr. Couldwell came by to check on Jodi. He had her lie on her side and tilt her head down and it didn’t take long for CFS to begin dripping out her nose. This probably explains the continued spinal headaches. Jodi and I were very disappointed as it feels like we’re back at the point we were before her second surgery. He explained that it could be fluid that built up in the nasal cavity before the surgery Monday and hasn’t had a chance to leak out since she has been on her back since then. However, there is a good chance the leak in her head continues. As he explained, a sure way to solve this is to plug the eustation tube by either going in through the ear or up through the nose. However, this would permanently plug the ear and pretty much take out the hearing in that ear and at Jodi’s young age that isn’t a great option. He also mentioned that he hasn’t had any patients where that ended up being necessary since the earliest years of his career. Of course, nothing about Jodi’s case has been typical… Dr. Shelton also stopped by and he said in 25+ years he has only had four patients where plugging the eustation tube to stop a CSF leak ended up being necessary. So… that’s where we are at this point. Jodi and I were very disappointed today. Jodi cried for about an hour. We’re going to wait a couple days and see what happens and clearly we won’t be coming home as soon as we had hoped.

This afternoon and evening Jodi had some wonderful visits from friends including: Jodi Carlson and Connie Burton, Sister Tate and Sister Read from the Relief Society, Aunt Deanne and Steve, and also Tolan’s boss Dave Siebert. All of these visits were uplifting bright spots on an otherwise difficult day. Also, thanks to Tamee for yet another pick-me-up and to the Hanneman family in Hawaii for the visit, thoughts and well-wishes.


Needing Continued Prayers

Jodi had a better night last night than the night before and today has been a bit better as well, but fundamentally the headaches continue and she still can't get up and around without the headaches spiking. Jodi has asked me if I would ask you for some special and extra prayers. She so wants to go home, but knows she can't while she is still feeling this way.

As has always been the case, your faith and prayers, and your comments on the blog are providing her with the strength she needs to make it through this. She looks forward to being connected with you in this way. You are her connection to the outside world and a more normal life.

Wednesday, June 3, 2009

We have hope

Jodi had a very long night, her worst so far, and a long day with the severe spinal headaches. She said the pain was more intense than the pain of having a baby. The purpose of the lumbar drain was to reduce the pressure of the CSF (purposely allowing it to leak out – like a pressure relief valve) to give the packing in the brain time to heal. At about 4:30pm this afternoon a doctor removed the lumbar drain and instructed Jodi to remain flat on her back for three hours and then slowly elevate her head as she could tolerate it. Because of the nausea Jodi hasn’t had much to eat or drink all day so they hooked her up to an IV again to prevent dehydration and to help her body regenerate CSF. If the leak in her head does not reoccur and there is no leaking from the location where the lumbar drain was inserted Jodi should start feeling better soon and could go home as soon as tomorrow afternoon. That’s what we’re hoping for.


Jodi's Worst Night Yet - Some Family Fun

Late last night after some special visitors departed Jodi experienced the worst spinal headache yet! It lasted the entire night! Despite the diligent efforts of the night nurse, the pain medication just didn't do the trick. She was also nauseated and vomited for two hours before some medication got that under control. Jodi said this was simply the worst night she's experienced through this entire ordeal. Tolan stayed with Jodi through much of this difficult and painful night.

She hasn't been able to eat, because she can't sit up at all. She is lying flat and keeping her head completely still.

Right now she is trying to rest as best she can given the circumstances.

We're hoping this is a temporary condition that Jodi will get through quickly so she can still get out of the hospital soon.

They did remove Jodi's bandages this morning. You can see a picture below of her incision with the new staples. It doesn't look quite so bad as the first surgery. They only shaved her head right around the actual incision itself rather than taking a wide swath across her head as they did before. That's good!

Jodi did want you to know that there were some members of her family having fun yesterday. Below are pictures of Jodi's children from their outing with their cousins (Tami's kids) and Grandma Orgill. They all went to McDonalds for breakfast and then for a walk up Provo Canyon to Bridal Veil Falls. They had a lot of fun! Jodi is looking forward to getting out of the hospital and having some fun adventures like this with her kids once again!

Jodi's new incision and staples. Note this time they put a couple of the staples right through her ear. We don't know why.

Grandma Orgill and the cousins getting started on their walk to Bridal Veil Falls

Bridal Veil Falls

Arriving at the Falls.

Trenden and Lindi hiking up the bottom part of Bridal Veil Falls with cousins Taylor, Trent, and Jaida.

Casen thinking the water is really cold!

Casen and Daven enjoying sitting on the branch of a big tree in the park leading to Bridal Veil Falls.