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.

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.

Tolan

Surgery

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.

Tolan

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.

Tolan

Pneumocephalus

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!

Tolan

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.

Tolan

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)

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.

Tolan

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