Tuesday, May 12, 2009

To deaths door and back. The end of the blog. Written by Jeff

I am alive and back at home. It was quite an ordeal and I will pray that no one that I know will ever have to go through it. I want to close the blog and give a detailed description of what I went through and then just say thank you for all the prayers and well wishes that helped bring me through.
6:00am check in at St. Mary's Hospital(Mayo) It is reported to be the largest hospital in the country. Line was 20 deep at 5:50am and people were still lining up.
7:00am in a holding room getting quizzed by nurses preparing me to get to the prep room.
7:15am left Kim and my sister Ann behind heading to be prepped for surgery.
A super nice young resident anesthesiologist did all the prep. IV's in both wrists, IV's in both forearms, 6 shaved spots on my chest where electrodes were placed. Another spot shaved on my chest for a line he said he would start when I went under. As I lay there I was scared I may not wake back up because I was told the week before by the surgeon what they would be doing. On the wall right in front of me was a crucifix, and I had a very good conversation with Christ. It is private though.
8:00 down the hall and off to OR. In the OR was a team of maybe 10 people. As they moved me to the OR table a nurse in maybe her mid 50's said I would do great. This team removes brain tumors every week and Dr. Link was awesome. I felt a little better. Then the head anesthesiologist gave me a mask and said take a few deep breaths and I remembered nothing. Kim and Ann would be given updates all day. As family from other patients in surgery would hear that their family was in recovery room whatever, Kim and Ann would get updates for 8 hours. The surgery has started, they are opening, Dr. Link has him under the microscope, they are closing, etc. I was asleep and going through the procedure as they sat for 8+ long hours waiting and waiting.
At about 4:00pm I remember Dr. Link tell me that the surgery was over and it went great, but I could not see him. I then remember waking and puking and falling back asleep for the next several hours. At that point you're not really sure you wanted to live. The next afternoon I got out of ICU and into my own room and things got slowly better until they let me out Sunday afternoon.
The young resident anesthesiologist came in at day 2 after surgery and wanted to know the last thing I remembered and the first thing I remembered upon awaking. He has to chart how well he does during his residency. After explaining to him how well he had done, I asked him to tell me what they did in surgery, everything. So he did. He told me that the first thing they did was paralyze every part of my body except my heart. Put a vent down my throat to work my lungs. Then they secured my head in an apparatus he called a halo. It is a device that screws to the front and back of your head so that when locked in position your head cannot even move a mm during surgery. Then the OR table converts to a chair and my body and the halo are locked in a slightly forward sitting position for the entire 8 hours. No wonder my butt was so sore for 2 days. Then the resident Neurosurgeon Dr. Ball, another awesome young Dr. opened the back of my head from the base of my skull to the top of my spine. He had to remove a third of the top 2 vertebral bones, said I will never miss them, separate the muscle and tissue and use expanders to give the head surgeon a window approximately 4 inches wide by 5 inches long so he could see the entire tumor as he worked. Then Dr. Link wearing a microscopic head gear spent nearly 6 hours removing the tumor. Luckily it came away from the brain stem and spine without incident. Came off of the vertebral artery that it had engulfed and Dr. Link only had to remove the lining of my cerebellum to get it all. Then a tissue graph was taken from my leg to fill in on the cerebellum and Dr. Ball closed the incision he had made. Gross and amazing at the same time. The young anesthesiologist said that 20 years ago they did not have the ability to do this. He also informed me that the line he started on my chest was in place to remove air from my heart if needed. He said that operating for that long in a sitting position with such a large opening in my head has a good risk of air getting in my head and going to my heart. 1 anesthesiologist spent the whole surgery listening to my heart for air. Never happened I guess. The surgery has a much better success rate when performed in a sitting position but has more risk during surgery. It is over and I am home and that is all that is important now. I am alive and can see my kids and in a couple months should be totally finished with this. What an amazing team of Doctors at Mayo. So again thanks for all your prayers they were heard and now you can call Kim or myself and get back to normal things.

Sunday, May 10, 2009

To be released soon!

Happy Mother's Day!

I want to make sure and wish my own mother, mother in-law and Nana a wonderful Mother's Day! We love you both and will provide you with lots of hugs and kisses when we return! Have a wonderful day, we are thinking of you!

Jeff actually got up and went to mass in the chapel today! St. Mary's has a BEAUTIFUL chapel. It's actually bigger than St. Peter's in Lincoln! He did alright through most of the service but did get a little tired towards the end. The good news is, he didn't have any of those earth shattering hiccups while he was there!

One of he Residents prescribed a drug that could possibly help with the hiccups. So far (and keep your fingers crossed that it continues) the hiccups have seemed to let up a little, he is even resting right now, so maybe we are on to something. Thanks for all of the hiccup cure ideas! The nurses have gotten a kick out of hearing them! :)

Jeff is scheduled to be released this evening. If this happens, we will stay at Sherine and Frank's house tonight and then head for Lincoln in the morning. We are expecting that the trip home will take quite a bit longer than the trip here, since we will need to take frequent breaks.

Hope that the weather monitor on my computer is wrong, and that Lincoln is not having thundershowers, but instead is sunny and warm! Have a wonderful Sunday... hope to see all of you SOON!!

Kim :)

Saturday, May 9, 2009

Doctors say he is looking Good!

Happy Saturday!

Hope the beginning of your weekend is bright and sunny! It is a beautiful day in Rochester today, a few clouds, but the sun keeps managing to break through. :)

Mr. Hiccup is feeling stronger every day. The doctors are amazed at the way he is rebounding from this surgery. His vitals are strong, he is tube free and pain free, he is eating and drinking and he leaves the nurses in the dust on his walks. The only think that is really frustrating, are the darned hiccups, and the doctors don't seem to be too worried about that.

The doctors are still thinking that Jeff can probably be dismissed either Sunday or Monday. He is getting very anxious to get home.

Well, my clicking is driving him crazy, so I will stop for now. I'll write more later!

Keep smiling,
Kim :)

Friday, May 8, 2009

...we are still hiccuping!

Hello,

Yes, we are still hiccuping... Poor guy! We asked the doctor about it today. When I inquired about how long they could last, his response was, "oh, anywhere from a week, to 6 months." I about died when he said that! We are hoping that they end MUCH sooner than that! I have been scouring the internet for possible remedies and beds for MY new bedroom! Just jokin' :)

Jeff is up to four walks around the floor. He is taking his last walk of the day around 10:00 PM. The doctor asked him to get in at least three walks today, but of course Jeff had to up that! Jeff is also tube free as of tonight! All of the IVs, and other things, that I won't go into depth about, have been removed. :)

We are hoping that Jeff will be able to get out of the hospital by Sunday. If that happens, we will probably stay with the Kevin and Sherine on Sunday night, and head for home on Monday. The doctor said that Jeff will require frequent stops on the trip home, possibly as often as every hour (same as when I travel with you, Barb!) ;)

We actually had company tonight! The three of us were kind of stunned when the nurse walked in and asked us if we were up for visitors! Around 5:00 tonight, My Uncle Jim, Aunt Kathy, Cousin Mike and new cousin, Andrew, all walked in the room! Mike's wife, Steph, had to work, so she wasn't able to come. We missed you, Steph! Pat's brother, Kevin, an oncologist at Mayo in Mankato, also made the trip over to see Jeff. He has been such a God send to us! It was SO nice to have family visit. It really brightened Jeff's day (and mine!)

Well, the hiccups are gone for right now, and Jeff is trying to take a little snooze before they start again, so I guess I will stop "clicking" on my computer keyboard (another of Jeff's little pet peeves!) :) Have a great night!

Love you all!
Kim

Still has the... hic, hic...hiccups!

Good morning,
Well, Jeff is still battling the darn hiccups! I've never seen anything quite like it, it's the weirdest thing! I had to laugh at my Aunt Kathy's, blog post... hiccups or brain tumor, not much of a choice there, I think he will definitely take the hiccups! I tried to explain this reasoning to Jeff, but I got growled at (between hiccups of course!) :)

He has been out of bed and walking this morning already. In fact, he walked the entire loop of the floor he is staying on. Yea for Jeff!!

Right now, he is having his hair washed by the nurse's aid. He is also getting a shave, even though I told him that I kind of liked the scruffy look. :)

We are still waiting to hear when he will be able to go home. I just want to make sure he is A-OK before we take him back to Nebraska (especially since we have a six hour drive.)

It is a beautiful day here in Minnesota. I hope the sun is shining on all of you in Lincoln.

Love and miss you all!
Kim

Thursday, May 7, 2009

Hiccups?

Quick update before I go to bed...

When Ann and I left the hospital, Jeff had a bad case of the hiccups, yes, the hiccups. The funny thing is, before tonight, I have NEVER heard Jeff hiccup! The doctors think it has something to do with the part of the brain that was operated on. It seems that the hiccups have some connection to the brain stem (don't ask me what) and the trauma from the surgery is causing him to hiccup. The bad thing is, that trying to sleep when you are hiccuping is mighty tough! We are hoping that the nasty spasms subside tomorrow!

Jeff did get out of bed and take two short walks down the hallway this evening. He really didn't need a lot of assistance, but when the nurse asked him where he wanted to go when he came back into the room (meaning chair, edge of the bed, etc,) Jeff replied, "right back where I came from!" :)

I Just want you to know that Jeff sat in bed and read all of your posts on the blog tonight. He was kind of choked up over all of the kind words, thoughts and prayers. Thanks for taking the time to write to him!

Kim

Good News!

Good Morning,

Jeff had his MRI done. He has still been pretty sick to his stomach, so I don't think that the test was a very pleasant experience. The good news is that we do have the results of the MRI and the pathology and things are looking good! The surgeon said that the MRI shows that they were able to remove ALL of tumor! When Jeff asked about the amount of the cerebellum that had to be removed, Dr. Link said that they only had to remove some of the lining.

The diagnosis is a grade 2 Ependymoma. It is a usually slow growing tumor of the brain and spine that is commonly benign in nature. Jeff's was rated a grade 2 because of the length of time he has had it. The doctor is consulting with the neurological oncologist tomorrow, but at this time, feels that the only thing Jeff will have to do is heal and have follow-up MRI tests done to make sure that the tumor doesn't grow back. If it does return, and we'll cross that bridge when we get to it, it can be removed surgically or treated with radiation.

This morning Jeff has been actually sitting more upright in bed and has been trying to keep down some clear liquids (jello, tea, chicken broth, etc.) Ann and I told him that when he felt better we were going to bring him some Kentucky Fried Chicken (we thought he LIKED Kentucky Fried Chicken!) He started ranting and raving about how gross that sounded and how it wouldn't sound good even if he wasn't nauseated! Oh well, we try. :)

Thank you all for your prayers, I truly believe that they were answered today! Each and every one of you means the world to us.

Love you!
Kim

Wednesday, May 6, 2009

One cracker down!

Hi,
Jeff continued with his nausea most of the day and into tonight. The doctors feel that it is due to the anesthetic, as well as from motion and his balance. He did manage to sit up tonight and even ate a cracker. He is still hooked up to an IV for fluids but has been trying to sip small amounts of water and juice through a straw. We are hoping that he will feel better in the morning and that the nausea has subsided some. I do have to give kudos to Ann for being a great nurse to Jeff, I'm sure you all know how well I do with puke. ;)

The doctor also removed his Knoll's swimming cap (A.K.A. his bandage.) I am happy to report that they did NOT shave his entire head so we won't have to stare at Jeff's bald head all summer (I saw pictures from when he shaved his head in high school, and believe me, it was not a pretty sight!) They did shave a square patch in the back of his head where the incision is. The incision is probably close to 4 inches long... ouch.

We are hoping to receive the MRI and pathology reports tomorrow, so please keep Jeff in your prayers until then. Thanks for all of the wonderful notes you have left, Jeff has had fun listening to me read them.

Until tomorrow,
Kim :)

Out of ICU!

Hi everyone,
Jeff moved from the intensive care unit and up to 9th floor (they actually just wheeled his bed right onto the elevator and up to the next level!) He is still feeling quite queasy, but his head doesn't seem to be bothering him as much (go figure!) He hasn't eaten anything yet, and really hasn't even had much to drink, so he is still on an IV. To put it bluntly, he pretty much feels like crap.

Ann and I have spent the entire day up here with him. We have tried to get up and move around as much as possible, but the space in the room is pretty limited (and I don't want to get too far away from his room, because I'm afraid I will never find my way back!)

Jeff hasn't been out of bed at all, in fact, he hasn't even been in a sitting position yet. Unfortunately, the nurse just informed us that she has "orders" to get him up and moving... I think I may have to go out and get "lost" in the hospital during that time~ he told Ann and I to leave last night because we were whispering, I can't imagine what he is going to tell the poor nurse when she makes him get out of bed to walk around! ;)

Write more later!
Kim

...a little nauseated

Good morning,

Jeff is definitely feeling the side effects of the anesthesia today. He has been pretty nauseated most of the morning and is getting tired of feeling sick to his stomach. On a good note, he isn't having as much pain from the incision, and isn't requiring as much pain medicine as he was last night.

Doctor Link, the neurosurgeon, was in this morning around 8:00. He had Jeff do some tests to make sure that everything is functioning alright, and he passed with flying colors (he probably performed some of the tests better than I could have, and I haven't had brain surgery!) They are hoping to move Jeff to a regular room sometime today, as long as they are able get the nausea under control. They hope to have Jeff up and moving around some tomorrow, but want him to get as much rest as possible today.

Jeff will have the MRI done tomorrow to make sure that they were able to get all of the tumor, although Dr. Link seemed to feel confident that they did. We should also get the results of the pathology report tomorrow, as well.

It is SO quiet in this room. I'm not used to it being SO quiet.... hint, hint, 6th grade students! ;)

I hope that everyone is enjoying the nice rain back in Nebraska and that the sun comes out tomorrow. I'll post an update later today after the patient wakes up and I have more to tell!

Love you!
Kim

Tuesday, May 5, 2009

He asked us to leave! :)

Hello,

Well I think the patient is slowly returning to normal... as Ann and I were WHISPERING (and I do mean whispering) in his room tonight, Jeff opened his eyes, squinted at us and said, "leave... I can hear you whispering, you need to leave so I can sleep." Nice huh? :) I told Maddie and Cole that his bandages kind of make him look like he is on the Knoll's swim team and is wearing a swim cap!

Jeff is staying in intensive care tonight and could be moved to a regular room as soon as tomorrow afternoon. We did have to tell the patient that it is OK to take the pain meds and that he doesn't have to be a tough guy. When we left, they were giving him another dosage of morphine. Hopefully it will help him sleep through the night.

Ann and I are blessed to be staying in the beautiful home of two of the nicest people I have ever met! Frank and Sherine Cockerill, Ann's brother and sister-in-law, have opened their home and hearts to us. Frank and Sherine are both doctors at Mayo and live only blocks away from St. Mary's, the hospital Jeff is staying in. They have been so wonderful to all of us. I can't thank them enough for their kindness and hospitatlity.

Jeff''s doctor will be checking on him tomorrow morning at 8:00, so Ann and I plan on being back at the hospital bright and early. I'll write more after we get an update from him.

Love you all!
Kim

He's out of surgery!

Newest Update...
Jeff is out of surgery and in recovery! Ann and I just met with the surgeon and he said the surgery went great. The surgeon felt that he was able to get the entire tumor, but will do an MRI tomorrow to make sure. The tumor was attached to the Cerebellum but wasn't as close to the brain stem as they had once feared. We should have the pathology report tomorrow or Wednesday.

The doctor said that Jeff was awake and had moved his arms and legs. He also said that he was nauseated and had quite a headache (imagine that!) We are waiting to see him so I will write more later after we get to his room...

Kim :)

They are starting to close...

Hello,
The nurse just came into the waiting room to tell us that they are beginning to "close." We both breathed a big sigh of relief. It's nice sitting here with Ann, the nurse, because she keeps me filled in on all of the medical lingo! She feels like we are through the hard part.

Right now they are taking a graft from his thigh to cover the exposed area of the brain before they close it back up completely (sounds like a lot of fun, huh... ugh.) Funny story... This morning, Jeff was worried about where they would be able to find skin that wasn't covered with hair! He was afraid hair would start growing on his brain and out of his ears! LOL! Anyway, this procedure should take about an hour, and then he will be in the recovery room for up to two hours. I don't think that we can see him during this time.

Ann has busied herself with texts and solitare, and I have been grading Theme Tests (yes, my dear 6th graders, I didn't forget about them!) :)

Keep those prayers coming... I think they are working!

Love you all!
Kim

...still waiting

Hi Everyone,
The most recent update from the nurse is that Jeff is now, "under the microscope." We assume that this means that they have actually started to remove the tumor. The nurse said that Jeff is stable and doing great!
They moved the two of us to a new waiting room in the neurology area of the hospital. It should be good for my diet plan since I will NEVER be able to find the cafeteria now! This hospital is ridiculously huge- I've never seen anything quite like it!
We should get another update in a few hours. Thanks for the continued thoughts and prayers!

Love you all!
Kim

Just waiting....

Hi Everyone,
Jeff went into surgery at about 8:00 AM- he looked really cute in his gown and booties! :) He was a little nervous but in good spirits, I think he was just excited to finally get started. Jeff's sister, Ann, and I had a small breakfast and are in the waiting room with TONS of other anxious families.

Mayo is something else, and has been quite an experience. When we arrived at 6:00 AM we waited in a line to check in. We were then transferred to another waiting area until our names were called. They then herded us up to the 1st floor where everyone was placed in a different room- there Jeff changed his clothes and met with a nurse who asked him a million questions! Ann and I both had to laugh when she asked Jeff if he had any piercings! It was obvious she that didn't know our Jeff! :) Immediately upon sitting down in the waiting area, a "nurse communicator" introduced herself to us. She said that she would keep us updated throughout the entire procedure. When we told her our cell phone numbers, she asked if we were from the Omaha area, seems she just moved to Rochester from Omaha, so we are in good hands.

So, right now we are just waiting. I will up update the blog as soon as we know more. Thanks again for your thoughts and prayers, they mean the WORLD to us.

Kim

Wednesday, April 29, 2009

The Beginning of the Unplanned Adventure

To catch those of you up who may just be learning of this "unplanned adventure," Jeff found out that he has a brain tumor on Thursday, April 16th. The tumor is located below the cerebellum, close to the brain stem, and is about 6 cm by 4 cm. After meeting with a neurologist in Omaha, we were informed that the tumor is operable, but that the removal will require a talented surgeon, due to its close location to the spine and brain stem. Jeff and I promptly decided that Mayo was our hospital of choice (thanks to Pat and his incredible family,) and plans were quickly made. The surgeons at Mayo asked Jeff to have an additional MRI test performed on his spine as well as meet with the neurological oncologist and the neurological surgeon prior to surgery. Jeff decided to travel to Minnesota with his dad, while I stayed home to deal with work and the kids' hectic schedules.

Jeff and his dad, Rich, traveled to Mayo Clinic in Rochester, Minnesota on Monday, April 27th. Upon arrival, Jeff spent two hours having a comprehensive MRI done on his spine. He later met with the neurological oncologist to discuss the possibility of needing further treatment after the tumor has been removed. Jeff spent over an hour with the specialist and walked out feeling better about the situation than when he walked in. The doctor showed Jeff angles of the tumor that he had not yet seen and explained that the tumor is not as close to the brain stem as we had once feared. He also felt that because of the tumor's slow growth (which we were told could have been growing for over 8 years!) that no treatment should be needed after its removal (of course we won't be sure of this until the tumor is actually removed.)

Jeff had his pre-op examination on Tuesday morning prior to meeting with the surgeon who would be actually removing the tumor. Again, Jeff and Rich were in awe of the the professionalism displayed by the surgeon and the staff. The surgeon walked Jeff step by step through the procedure to be performed, which in its entirety could last up to 8 hours (I won't go into detail here, but let's just say, it's not pretty.) Jeff is expected to be in the hospital for up to a week following the surgery and will then be out of work on short term disability for up to 3 months. He will be restricted from lifting anything over 10 pounds (that means he won't be holding the dogs! LOL!) The doctor feels that a full recovery is likely with only a slight chance of side effects that could include numbness, tingling, etc.

So now, we are waiting until Monday, May 4th to take off for Minnesota. During the next few days we will pay bills, write sub plans and detailed plans for grandparents to follow. Thanks so much to ALL of you for your support and prayers. We don't know what we would have done without you during the past several STRESSFUL weeks. Please Check this blog for updates in the near future and feel free to leave comments (I think we will have LOTS of time to read them in the hospital!) Please keep Jeff in your thoughts and prayers on Tuesday, May 5th.

Lots of Love,
Kim

PS Thanks to my friend, Cooper, for helping me to set this up! :)