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.

Tolan

18 comments:

Flints Facts said...

Jodi & Tolan, I am so sorry for your setbacks...you two are very strong and I know you can get through this. Hang in there and know that we continue to pray for you. I feel so horrible for the trials you are having to face...but your faith has been amazing and will continue to get you through this...Our Heavenly Father knows and loves you and will continue to watch over you.

Lots of love and prayers,
Kelly and Family

Jeff DuBois said...

Hi Jodi,

Just hang in there! We're all thinking about and praying for you. You've got an amazing support system, which is even more important that the follow-up care from your doctors.

Jeff-------

fisod@byuh.edu said...

ALOHA JODI
I LIVE IN HAWAII AND YOUR DAD AND MOM COME TO THE BYU HEALTH CENTER FOR CARE. I AM EMPLOYED AT THE HEALTH CENTER AND I JUST WANTED TO LET YOU KNOW THAT I PRAY FOR YOU AS WELL AND HOPE THINGS START LOOKING BETTER FOR YOU. YOU HAVE SUCH GREAT PARENTS ALWAYS SO CURTIOUS WHEN THEY COME IN AND I AM SURE EVEN THOUGH I DONT REALLY KNOW YOU, YOU ARE JUST LIKE THEM. I WISH YOU THE VERY BEST AS YOU RECOVER. PRAYING AND THINKING OF YOU ALWAYS
DOT

Pam said...

Jodi and Tolan, I am so sorry about this setback among setbacks. I continue to pray. Your pure endurance challenges me every day.

britt said...

I feel without the appropriate words at this time, to comfort and uplift you. I can only imagine how frustrating all of this is. But Jodi, you have always been a tremendous example to be of strength and endurance beyond measure. I know those qualities and MANY others are what get you through these trying, challenging times! Hang in there...love ya

Anonymous said...

Jodi, just want you to know that we are continuing to have talks with the Lord about you and also to let you know that you are an inspiration to us! Our thoughts and prayers are centered around you, and trying to imagine what you are going through is not possible without being in your shoes! It has made us realize that the challenges we go through is nothing compared to yours! compared to yours! Your attitude amd courage is an inspiration to all!
We love you Jodi! We pray that today will be a better day for you and that the doctors will be guided to know how to make you
well!
Grandma

Anonymous said...

When these trials are finally over (and they will end), you can look back and say, "Wow, I got through that! (And it was a ton to get through.) There is nothing fun, exciting, or nice about this experience. It sucks. It REALLY sucks. We all wish the torment would end for you. Endurance is hard, but you can do this. Try not to let discouragement overcome you. Know that family, friends, and strangers are praying ang pulling for you. I hope you can feel the pull to a bright outcome. I wish there was more one could say or do to help.
Love ya, Wendy

Shea said...

Jodi, I haven't checked your blog for a few days and I was hoping for some better news. I am saddened today to think of all you are going through. Your experiences definately make my trials seem so small. I love and pray for you. Shea Morley

Debbie Rhoads said...

Jodi & Tolan,

I just don't even know what to say. It seems to get to the point where there just can't be any more disappointments and then they still come.

My sharing time in primary this week is on "Faith in Jesus Christ strengthens my Family". I just can't stop thinking about your family and what this struggle is all about. Its hard when you don't have any answers, but I guess that's what faith is all about. (can't say I'm a big fan at times like this...its not easy, but I don't know what I'd do without it. Gives you something to hold onto when everything else is going down the tubes)

I sure love you Jodi, and am so grateful for our friendship and the great pillar of faith you and your family are to all of us. Don't give up. We are all still praying for you and things will eventually get brighter.

love,
Deb

garylisapeterson said...

My heart is melted from your pain, suffering and disappointment. I know our Heavenly Father is aware of how difficult this is for everyone involved. He loves you all, and He hears your prayers.

I am confident he will show you tender mercies to lighten the load. Our Savior took upon himself our "infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities." I am confident He is looking after you, and will remain nearby, "having the bowels of mercy; being filled with compassion towards" you all.

I feel our Father's love when I think of you and when I pray for you. Tomorrow I will be at the Draper Temple and will again put you on the prayer roll there.

All my love,

Gary Peterson

Karen said...

Jodi,
I have been crying with you, everyday. I don't know why we have the trials we do, but I know that in our darkest hours He is with us. I know He is with you, my friend. Don't give up!!! Liu

wjmom said...

I'm sharing your disappointment. The up side is the very small chance of the eustachian tube plug being necessary. You--all of you!--are continually in my prayers.

As your link to the outside world, let me tell you that our oldest daughter graduated from high school yesterday. If you had been hanging out at the E Center or the SLCC campus all day long (instead of the fun time you had at the hospital, of course), you would have see approximately 4.5 bajillion high school seniors in their colorful caps and gowns, taking a step into the unknown and exciting world of adulthood. It's interesting how some steps in life are just baby steps--and somewhere along the way you realize that you are now in a different season; and other seasons have clearly defined entryways. Like graduations. And illnesses.

Here's to a new season called, "Going Home."

Loves!

Aundrea

Anonymous said...

Hi Jodi,

I enjoyed talking with you last weekend. I am praying for you - just hang in there a little longer. I hope that you can have some sunshine here soon. Love you tons. Sue Davis

=Molly= said...

This is indeed sad news, yet I am grateful for the success of the past procedures. Keep up your faith Jodi!
I hope and pray you get well soon!
Love you!

Joni said...

I'm sorry you are having so many set backs! I was hoping you were able to go home:( I hope today things turn around for you Jodi, I will pray especially hard for you that you may heal and that you may return home to your wonderful family very soon! Thinking of you often!

Anonymous said...

Dear Jodi,
I hope and pray that Dr.Coulwell and Dr.Shelton are right that you won't have to have your eustation tube plug.Hope the spinal fluid stop leaking out by now!Headach is a terrible pain.You have been through this pain long enough.Hang in there.Heavenly Father hears and answer our prayers.It's going to get better from now on...
Our thoughts and prayers are with you and your family always.
Love, Saras & Sanya and family.

Anonymous said...

Jodi I am so sorry to hear about the latest setbacks. I check your blog several times a day and feel so many emotions with the changes in progress. These latest setbacks have left me very frustrated and disappionted. I can't imagine how you are your family feel at this time. you will continue to be in out thoughts and prayers. I am hoping that the drainage is just left over from monday. Thank you for the continued information. Love, April B.

Anonymous said...

This is where we play the 'Glad game!'
In Pollyanna, she receives crutches instead of a doll - her father said, "Let's find a reason to be glad! We can be glad that we don't have to use them!"

Okay, Jodi.... it's your turn!
Hang in there!!
Just as soon as I get Kelly home for long enough, I'll come to see you!
Love Belinda xoxoxo