September 2012...a month I will never forget

I had planned on updating from Minnesota right before we left about the great month we had. We saw so many friends, did so many fun things, rode our bikes over 120 miles, and had wonderful weather to boot. The last week we continued to have company and see friends but Jerry was not feeling well. We had every intention of packing up and driving for home on the 7th. I even had a great route chosen and hotels booked for our adventure. Everything changed the night of the 6th and a trip to ER the morning of the 7th. This is the story of us told thru emails I sent to family and friends to let them know what was transpiring.

September 7th
I thought I would send out an email letting you all know about Jerry. He has been sick all week with flu symptoms and only getting worse each day. He spent 6 hrs at a clinic yesterday doing tests and on an IV for two hrs. They sent him home saying they did not know the cause and to return the next day if not better. He continued to vomit thru the night and began falling and blacking out. I took him to the ER this am and they continued with the tests including two cat scans and spinal tap. The said there was infection in the tap and came to viral encephalitis. He has it severely enough it is attacking his nervous system making even walking impossible.
They are also concerned about a mass that showed up in a cat scan and will do another tomorrow. He was admitted and on antibiotics and I guess it's a waiting game at this point. He is very sick but hopefully tomorrow will be a new day.
We were planning to leave the rental here in MN and begin our drive home today. I have moved out and was graciously invited to come stay with our dear friends Michelle and Dave...pets and all. Blessings for sure.
We are both exhausted and hopefully after a good night sleep we will be ready to face the new day. Not sure when we will leave for home but will keep you updated if you want.
Say some prayers..just might do the trick.
XO
Cher


September 8th

I can honestly say this has been one of the worse days of my life. I have not been sleeping for about a week and simply everything makes me cry. I have so many tell me I owe it to Jerry to send him to Mayo but it just seemed so difficult and an uncomfortable choice. When I arrived at the hospital this morning he looked like someone I did not know. He was unable to sit or stand and simply laid there shaking. I decided at that point I had to be assertive and take charge. So I asked for the dr and I said I feel I need to have him transferred to Mayo. I so did not want it to appear they were not doing enough but I knew if he did not survive this I would never forgive myself for not doing more. The dr was so gracious and called Mayo for me to find a dr willing to receive him and he arranged the transportation by ambulance. I truly could not breathe when told I would have to pay 4000-6000 for the ambulance out of pocket. Again its only money but its a lot and so not fair ins wouldnt cover it. The dr was so wonderful that I could not thank him enough and of course cried my eyes out.
They picked him up around noon and he arrived at Mayo around 430. My MN bf's daughter is an RN on the neuro floor and met him so she could be my ears. She felt he was in much better shape than a lot of patients they receive. My two gfs Michelle and Nancy, Gracie and I arrived a few hrs later and time for his final assessment of the day. He seemed much more present and was actually eating which I have not seen for days. They found weakness on one side, he still has double vision and its his biggest worry, they have him on 4 different antibiotics, will do another spinal tap for further testing, another ct scan to determine if mass they saw in first one is a worry. He will be at Mayo for at least another week...ok fine so I cried on this news. I soooo want to go home. So does he.
I wish I was one of those calm, focused assertive people that we all admire. I am not but truthfully I did everything I could today to help the person I love most and I did good.

I will be at Mayo early tomorrow morning to catch the next group assessment. I will let you all know what I know then. I am sorry if you call and I dont answer. Sometimes I am in the hospital and sometimes I simply cannot talk to anyone. I cannot thank you all enough for your concern and showing us the love. It makes my heart hurt in a good way and of course it makes me cry.
xo
C

September 9th

Well it's a new day. Jerry is coming back! I arrived this morning to find the bed empty. Agh! Off to a MRI. When he returned from this 2 hr procedure he was fairly drained. He was very emotional and scared which is a very good thing. He is present and aware of his situation and it's so much better then the past two days of being zoned out and detached. Yesterday he would not respond to me or make eye contact. Today he thinks I am funny and that makes my heart sing.
He also had another spinal tap and that was a bit draining but they plan to continue to test until they have answers. Mayo rocks.
He is able to walk with a walker now and that is huge improvement. Yesterday he could not even sit up so we are seeing great progress. I think he has one more cat scan tomorrow and they will begin PT to help him regain his strength and mobility.
I am daily humbled and brought to tears by all the people that have gone to such great lengths to provide love and support for us. I have no words to express my gratitude and pray someday I can return the affection. We have never felt more loved and it's such an amazing feeling. Thank you all for your concern, love and words of encouragement. They have been priceless and yes I continue to cry but only tears of joy today.
Xo
C

September 10
I am sorry I am so late sending out an update. I have been receiving texts, emails, and calls asking so here is a quick one. I didn't want anyone to worry!
Today was not as good as yesterday...less motor skills, foggier thinking, bad headache and all around frustration to not be continuing to improve.
He had his first shower and shave since Thursday and I am sure that felt like heaven.
He proceeded to sleep most of the day...even in the middle of conversations! He began PT today and will continue to try and get some muscle control back.
We had a social worker speak to us about what happens after he is released. They feel he will need acute rehab and we need to make accommodations to his abilities. He will need to fly home because a car ride could cause blood clots or other complications. This is not what either of us wanted to hear considering we have a car full of stuff and our sweet pets. We have offers for help getting it out there so I am sure it will all work out.
He had another CT today and I think that may be the end of those.
I just had a friend ask me how are you and I didn't know how to respond because every thought is about Jerry. Grace is bringing me great comfort while I try to de stress in my room...and if I could just stop worrying about how I am going to fix this BIG bump in our road trip. I just have no answers and every idea or plan goes out the window.
As Scarlett said "I can't think about that right now. if I do I'll go crazy."
Thanks for all the kindness and keep saying prayers we are out of here soon. We have golf to play!
 xo
C

September 11th
Jerry' s support group

Jerry was just returning from a CT scan and PT had arrived when I entered his room this morning. His headache was bad enough to bring tears so they ordered the CT to see if there was any bleeding or visible issues. Came back clear. Here's the thing about Mayo...they don't just wait to see if you improve, they go looking for the problem. I am a big fan.
He managed to rally for a bit of walking with his PT guy and sat to eat two bowls of Joe's Os his favorite breakfast at home. His friends delivered them yesterday because I'll try anything to make him feel better. From there back to sleep until his team arrived...
They feel this was caused by a virus in his system that has laid dormant. Not a Lake Darling mosquito after all! Do not know what caused it to surface but we all have hidden issues waiting. Just like shingles. They felt the meningitis was effecting his motor skills and like any brain injury he simply has to work his way back. They do not feel there is permanent damage but it will take time to heal. They want to get him off all the antibiotics because at this point they have served their purpose and his blood work is coming back clear. They are going to keep working to end the headaches. From here he no longer will need to be on the neuro floor and will be moved to a rehab floor to help him get his mobility and strength back. They did not say when however but I would imagine soon.
I am sure I've missed something but basically nothing but good news and we are feeling hopeful.
He continues to sleep lots and struggles to sit, eat, walk but those are all going to improve.
I am heading back now and will only update if anything changes. Thanks for caring.
Xo
C

September 12

Day six of hell week.
We have a definite diagnosis of West Nile Encephalitis/Meningitis. 1% get this to the extreme that Jerry has...poor guy. I am told it involves considerable sleep and a long road to recovery. Once we are home and in his own bed  it will all be so much easier for him to get well.
Still fighting crushing headaches and motor skills remain the same.  The extent of PT today was walking the floor while he is picking up speed it still takes great effort. Thinking and speaking exhaust him but he has great memory recall. Damn..he still knows all my faults!! He also had a procedure that due to misunderstanding it did not take place until late afternoon but we did get to ride in an ambulance to Gonda (another clinic). Definitely best part of my day!  Came back and had a shower and 2 bowls of Joes Os and went to bed. Tomorrow is a going to be a better day.

The team said because they have an answer to what caused illness they are ready to release him. They had told us he would most likely go to in house rehab but they are seeing improvement so he may not qualify any more. I asked knowing our situation how they could release him without rehab knowing he has to get on an airplane to get home. I guess for ins reasons its not negotiable. So I have been trying to figure out game plans for how to best arrange a way home for everyone. I will let you all know when I figure it out.
I personally had a really rotten day...no one tells you the patient's 'person' is capable of being taken to their knees. I actually asked a nurse to hug me today I was just so drained and tired. I have been trying to fix things and be the person Jerry needs me to be and its so difficult. People tell me to take care of me but I honestly don't know how.

 Last night I packed Gracie into my backpack and she went to see her dad. She did her best to fill in for Buster and I think it made him feel better. He asked her to come back tonight so it must have been comforting.

Thats it for today...I have no idea what tomorrow will bring but I will handle it. My brother told me I am the bravest girl in the world and I am not going to disappoint him now.
xo
C

September 13th
Subject: How's Thursday treating you?

Went to bed last night embarrassed of my update because it came across feeling a bit sorry for myself.  Today I woke up and told Gracie "let's roll!" famous words from a brave person ready to face any challenge. It's a new day and I have tentative plans in line and do not intend to cry even once! One thing I have learned this week is I can come up with a decent plan in 1-6 hrs. Someone here can change it in 1-6 minutes.
I arrived to a communications therapist trying to assess his ability to communicate by speech and thought. Poor Jerry...I couldn't even remember the 3 words she gave him! She said he had some spelling errors..duh he can't spell on a good day but is a whiz in math. He has difficulty coming up with the correct word. Seriously? I change sentences all the time because I can't think of a word or remember how to spell it. What she sees as cognitive communications deficit I see as being 64 and having the worse week of his life.
The team arrived and they are done and simply waiting to see if ins will say yes to in house rehab. He will stay at same hospital just a different floor and go into intensive rehab to improve his motor skills and speech. The social worker arrived and thought my plans A and B were rock solid and that today would be a perfect window of opportunity to drive to Alexandria and pack up everything for our friends to drive home. I had 1/2 hr to get back to hotel and pack up and hit the road. I left jk walking the hall with his PT person. He seemed upset I was leaving him but it's the only way we will ever get home. I see some improvement in certain areas but definitely think he has no memory of all we have been thru.
I am at my friends house wondering how we accumulated so much stuff and where it is going to fit. I told our friends to pack light! Tomorrow I will drive to the cities and get a hotel so I can see Rande who is in town with his band on tour. The next morning I will deliver my car, Grace and Buster to the Bishops and then drive to Rochester to be with Jerry. However if he doesn't qualify for rehab I will be going tomorrow to Rochester to get him. Do you see how flexible I have become?!
Have a good night.
So
C

September 14th
Friday update!

Nothing but good news...was transferred from neuro floor to rehab today and suppose to be 5-7 days but if he rocks it maybe less. He asked if he didn't get into rehab what would happen. I tried to reassure him and said I would be there to pick him up and go home. So he said he hoped he didn't get in then. I told him he didn't get to pick door #2 ..such a goofball.
I will drop car and pets tomorrow in MSP for long drive home. Thank you John and Jamie! Then I will drive to Rochester and move back into a hotel. Oh boy! Maybe this time I can enjoy being there. It's a beautiful place if you get the chance and again Mayo rocks.
I probably won't update more until I send you all a photo of him sitting on an airplane going home. There will be bumps in our road ahead but the worst is definitely behind us. I simply cannot believe that one week ago I thought he might die and here we are.
I am hoping to spend a few quiet days getting reacquainted with our home and seeing what he is capable of doing. We will have been gone for over 7 weeks and as Dorothy said.."there's no place like home!"
big hug and eternal gratitude to each of you that has reached out to me this week. I am forever changed by this experience and I hope a more grateful person.
Xo
C


September 15th

I know I said I would not be updating until I had my man on an airplane but I have numerous complaints so here you go. Please just let me know if you are as tired of my life as I am.
Our son Rande is on tour with the band Purity Ring and between performances in Winnipeg and Minneapolis we arranged a meeting on hwy 94 exit 97. It was a highlight to be hugged by my boy and a bit surreal to meet near a town we once shared. I had the pleasure of meeting his band mates and just sharing a bit of his life. It was a stop, hug and run because they had a show to do and Rande said msp loved them!

I was not able to sleep last night...again...and got up at 500 to drive my babies down to the cities to trade off. I won't lie I sobbed as they drove off on their 30 hours, 3 days drive...without us. This was suppose to be our adventure. I took comfort in knowing it was a huge step necessary to resuming our life but it was still so difficult to be happy.

I continued on to Rochester and was welcomed back to my hotel. You have been someplace too long when you start knowing people and giving others directions!
Jk had occupational therapy this morning working on his dressing skills. He continued with lots of walking and hand eye skills working on speed of response. He was tired and frustrated but is surely making progress. He is extremely emotional and struggling with the lack of ability to stop it. I have read that is entirely a normal response to brain trauma. Still having terrible headaches and we are both praying they are not a part of his future. He is feeling depressed but again that is normal and will only improve when he is in familiar surroundings.
It seems as his thinking becomes clearer he is realizing just how sick he is and worries about finding his way back.
Night.
xo
C


September 16th
Sunday news

Today was spectacular! I arrived yesterday after my man had finished therapy and he was tired so I never saw him do more than walk to the bathroom. I had missed 3 days of his PT efforts and had nothing to compare. Today I arrived early and was amazed at his progress. His stride has increased and so has his pace. He is still a bit leery of falling because he does not have the strength to catch himself. They took away the walker yet when he is tired he wishes he had it. I was asked to come along to occupational therapy and watched him improve at everything she asked of him. If it was difficult to lift his arm he continued until he could do it. Still weak on the right side but improving daily. When we returned to his room he broke down because he was embarrassed to have me see him so weak. I thought he was amazing especially knowing how far he has come in a week. Can you believe it has been 9 days since we entered the ER in Alexandria? What a journey we have had and I only see hope and good news ahead.
Jk's brother Ken and wife Betti drove from New Ulm to visit today and were pleasantly surprised at how well he is doing. He went right from PT to company with no nap and managed to stay awake and be talkative and with great memory of details. He was not able to do this when I left on Thurs so I am excited. I wanted to add a photo of them but this is not my computer and simply could not figure out how. Sorry boys!
(Ok well now I am home and here is the photo! )

There will be a team meeting tomorrow morning to discuss how things are going and a possible discharge. I am so happy and anxious for a confirmed date so I can work on getting airline tickets home. Its never easy so last minute and in order to insure his comfort I feel he needs to be in First Class and no we will NOT be flying standby. I have a friend Sally that has offered to drive down here and spend the night to help us get to the airport, drop off John's car and get to the terminal without stress and Jerry being left waiting on me. Bless her! If I can get tickets on AA my friend Gugi has offered to meet us in DFW to help with transfer of planes. We are truly blessed to have so many wonderful friends. Thank you all.

Some of the things I have learned this week.
Good friends are God's way of hugging you. Always pack more underwear than you think you need. I still hate drab cold sad hospitals...even Mayo. I can make amazing decisions even when I am crying. If your friend in crisis asks you to think for them, do it. Any decision you make gives them strength to handle the next one. Random acts of kindness are essential in life even if it means changing your plans to help someone else. Never let God know you are working on your marriage. He will send you a lesson so BIG you can't imagine a minute apart. Ever. I did not know I had this much gray hair. I can come up with a plan in 1-6 hrs and someone here can change it in 1-6 minutes. We have never been comfortable asking anyone but our sons for help but our family has grown. I have learned its ok to accept help...friends actually want to make our life easier. If someone is in crisis and you hug them..don't let go until they do. Hugs are therapy and maybe your meter is full but theirs might not be.We have some of the most amazing friends and family and feel more love than we knew existed.
Love hugs and eternal gratitude to all of you.

xo
C

September 17th
 Another Monday in Rochester

Jerry continues to astound his team here with his quick come back. He has walked outside on bumpy ground, visited the chapel, got dressed, shaved with no bloody cuts and passed even the psych tests. I continue to get lost here like a mouse in a maze so I am glad no one is testing me!
There will be a meeting with all his therapists and drs tomorrow to discuss his case and give us instructions and advice for how to continue the process. He is going to be released on Wed and we begin our journey home! Hallelujah! I decided the least stressful way to do this is to check out of Mayo and drive to MSP and get a hotel. I can then return our friends car to the employee parking lot and come back to the hotel and not worry. A friend is coming down and we will have room service and visit and in the morning she can drop us off at the airport. J isn't doing steps yet and I worried about getting on the shuttles so feel better knowing we have help. I think she is afraid we won't ever come back and wanted one more visit!
Philip is trying to help us find airline tickets and my criteria is tough with the thought of what will be the least stressful, shortest, smoothest route. I ended up buying FC tickets on US Air because every time I checked flts the seats would be gone. Boy I hate air travel under stress!
We are so happy to finally see the light at the end of the tunnel and are on the road home.
Have a good evening~
C

September 21st
All in two weeks~

I still have so many asking how things are going I thought I would put together a time line of just how quickly your life can change and you will never be the same. Here is one last update and thanks for your constant support.
                                                   September 3rd boating on Lake Darling

September 7th Douglas Cty Hospital Alexandria

                        September 8th. 31/2 hr ambulance ride from Alexandria to Rochester and Mayo

September 9th serious double vision

September 11th John B helping with walking

September 12th Gracie visiting Dad at Mayo filling in for Buster!

September 19th finally released from Mayo 12 days later

September 21st on airplane from MSP to PHX to PSP.

Finally home and look who is there to greet him!

September 21st and sleeping about 18 hrs a day...but home.

We have a long way to go but together we can do it. The thing is with West Nile its such a new virus you simply cannot ask what is normal or what to expect. No one knows.. and each person gets it to a different level. Jerry has had every thing west nile can throw at him except death. One thing they do tell us is its a slow long recovery and to not give up. Thank you again to all of you that have prayed or kept us in your daily thoughts. I do believe it makes a difference. One day I want to share with him how much all of you cared. He does answer his phone now but he sleeps alot so no promises.
Love!
C and J

September 28th
For inquiring minds wondering what happened to my updates!

Well here we are one week later~
You know how you feel when you return from a trip and how good it feels to be home?  I read a post I made about coming home and thinking everything was going to be fine once we were here. Silly girl. I must say I am probably benefiting from being home more than Jerry because I have some normal back in my life. I can go in my sewing room or work in the yard and it helps me be a better caretaker. While J is happy to be here I dont see his life improving except that his back stopped hurting from the crummy hospital bed. He sleeps about 18 hrs a day, has lost his sense of taste so he barely eats, (and we thought it was the hospital food!), still has headaches and body aches, equilibrium comes can goes as well as the tremors. He has periods of time I think 'wow there he is!' and then bam back down. Recovery from the brain trauma just seems to be a very slow healing process and no set rules. I think what we wish most, (besides this never happened) is that we knew there was an end to it.
I have him walking our street twice a day now and doing a 3 lb weight to regain strength in his arms. He was suppose to begin rehab yesterday but the therapist got sick so he will go on Tues. For those that spoke to me on Mon or Tues ~sorry! I just had a couple of helpless feeling days and with one call to Mayo the course was once again set.  We hopefully will have some medical help we need to get the job done.
I am also getting him to speak to people on the phone (between naps) to help him feel connected. He went on his computer last night and there were over 120 emails!
Rande is trying to find a flt to come out next week and help out and I am looking forward to having someone to cook real food for!
Thank you all for the thoughtful cards, emails, phone msgs, texts...if one of us doesnt get back to you it doesnt mean we dont appreciate you caring. I just struggle with my need of normal and he sleeps a lot.
Love.
C