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March
16
2019

March 16, 2019

I have had people ask me to post our home mailing address:

3100 Pioneer Dr
Green Bay, WI 54313

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March
16
2019

Time to say Goodbye 💔 to Our Jackson


Visitation will be Tuesday, March 19, 2019 at
Lyndahl Funeral Home, 1350 Lombardi Ave, Green Bay, WI 54304
From 3:30 to 6:30 p.m. with Rev. Earl Vorpagel III officiating
Memorials May be given to the Jackson Konecny Memorial Fund.
A special memorial for Jackson will be decided with Jackson’s cares 
and remembering Jackson combined. A place to join us after will be 
announced after the service. 

March
14
2019

March 13, 2019

Mike, Oliver and I are Beyond Devastated to tell you that this morning at 2:45 am..we lost 
Our Dear, Sweet Jackson.😢💔

We know he was set free from his paralysis, inability to breathe on his own, emotional and physical pain...
He is now surrounded by so much love from Grandparents, Aunts, Uncles, Cousins, and many others who welcomed him into comfort.  Plus his BEST FRIEND and Companion, Alli...his loving Cat, who passed away close to 3 weeks before him at close to 17 yrs of age. 

Jackson, you gave us love, laughter, tears, frustration 😂, but most of all taught us how to live when life is tough and keep on pushing!  Jackson your strength through THE toughest times was SO Inspiring! 

Dad and I are so VERY Grateful GOD Brought us to you to be your Parents!  We will never forget the day we first saw those Big, Beautiful Brown Eyes In Paraquay.  We have been Blessed for 25 years!  Wish we could have many more years with you!    


I hope they have Football Teams in Heaven!  You can Make Those Plays you have had in your mind NOW!

Then rest with NO aches and pain..Can’t wait to see you again my boy!   

Love you, Tons, Buckets, Buschels and Pecks...Always, Mom ❤️


Thank you to all all who have given Jackson and our family so much love, kind words of support, visits to Jackson and us, all the cards and gifts meant so much to Jackson.  To him being Remembered ...he was in awe!   None of us could have gone through these past four months without all of you!  We will always remember your kindness.  

February
3
2019

January, 2019 update on Jackson

Jackson is still at Select Specialty Hospital in Madison.   For how long, that is unsure.  He arrrived as you know from last update January 11th, on a Friday afternoon very nervous to go back. He did find over the month that their was the positive difference from before being there of him not having the severe entire body, neck and shoulder pain he had on arrival Nov.22nd because he had been given the 5 days of 1000 mg of Prednisone at University Hospital and then down to 60 mg daily and tapered to 20 mg daily by the time he arrived at Select.  This took away that Severe pain that last time there, he needed turning of some part of his body almost every 10 minutes with 1 RN, 1CNA and 1 RT for 6 ICU patients and either Mike or I most of the day.  And then he did NOT have a way to CALL a nurse, if we or no one was in the room with him.  So nighttime, although staff did well, as most other patients were sleeping... was a constant time of FEAR for him.    Now he HAS a microphone he wears that is a headband, microphone goes by mouth, plugs into Auxiliary outlet by Nurses Call Button...and he makes a clicking sound inside his cheek on that side, and THAT sets off the nurses call light/bell.   That Microphone gives him the security he has a way to call staff when Mike or I are not there.    We were able to try it out on a 60 day loan from company.  Now we just bought it.   It’s wonderful.   I cannot believe especially ICU units do NOT HAVE a few of THESE for when  they have stroke or car accident or now a patient like Jackson come in...who have NO WAY to call a nurse. The devices they have are pathetic, and to work completely rely on a Nurses CARE of placing it in the correct position every time she/he moves a patients head.  Does NOT HAPPEN!   Not at St. Vts Hospital!  Then ONE device they had Broke!  

Families DO NOT think about it at night when they go home, that their loved one is not being watched like they think they are, on cameras, only if facing the camera, and staff does not stay by the room, and had them close the drapes on OUR son, when said look at him when walk by room...as can not speak, move a muscle... to get their attention!   So please if you have a loved one in this situation ever, overnight stay with them.. unless they have a proven device that WORKS, and you know will be replaced and checked it works every time patients head is moved in different position to...say hit chin on it to call nurse.  Sad... 

It took Jackson some days to settle his anxiety at Select.  He started within the first few hours with an RT who portrayed her own unhappy life on him, she had not been personable last time.  But when she came in this time, she asked if he had Improved?   Not the sickness from month or so!   Didn’t wait for me to answer.. as didnt look at a Jackson to lip read.  Then said.. “Well you know life is just hard, i lost my father in August and lots of bad things happen in life!  OMG!!!! I looked at J and her...J started crying, as he had been back 3 hours from weeks of such painful things, sooo sick and THIS IS WELCOME...   well, this MAMA BEAR...whoa.. I said to her “I am sorry about your father passing, she is prob 45/50”. But, NO J is NOT any better, and it’s your job to KNOW that before you entered this room.   And your father dying and J being 25 years old with lupus and now quadriplegic, on a respirator... THERE is NO COMPARISON!!!!   And that as a MEDICAL PROFESSIONAL is SO RUDE and I believe NOT in the oath you took!     And J you may recall is lovingly adopted and does not know his birthparents, and I lost my father at 24, my mom at 39..my husband lost his parents too young also... SO I WOULD LIKE YOU TO LEAVE.. and I am talking to your supervisor and you are NOT TO WORK with JACKSON again..unless it IS AN Emergency, then it IS YOUR responsibility to care for him if no other RT is here!  She left in a huff!   😡😡😡

ok.. Next day was better as the staff is very nice.   Early in the week he was found to have low Magnesium and Potassium and an IV was started for each.   When he left University Hospital on Friday he finished an antibiotic that day.  One of the two he had been on for the severe hospital infections he had.  He still had Pseudomonos and finished one for that.   I had asked at University Hosp if he could stay a few days to be tested after finished to be sure it was gone, but no because of Ins.  As he still had blood in urine. I could see it.  And that was one of areas infection was.    So of Course by following week think Tues.. back on same antiobiotic for Pseudomonos!  Never gone.   Actually retested again about 2 weeks ago.  Still in Sputum and urine.  Put back on 2 weeks of SAME Zofran. Blood was cultured also. Not in blood.  Asked why not dif antiobiotic? Because nothing grew out showing dif one to put on.   So he just finished the antibiotic few days ago.   Will see if gone.    He was given THE DOSE of IgG Friday, I fought hard for with Neurologist at University Hospital night before leaving!    He needed it I believe!  Sure could not hurt to boost his system!!!!!  

The Monday after J arrived, a Dept Head set up the Usual Conference meeting w me with ALL the the dept heads for the following Monday afternoon. The Wednesday after J got there, Mike was there J’s Case Worker went to his room and SHOCKED Mike, who contacted me...who shocked me.. with news that has had Mike and I so stressed out then and still.. and Jackson.     

To back up first!  When J was in GB and needed to go somewhere, we were told by Case Worker at St Vts there were only 2 places in the State he could go to, Select Rehab and a place in Milw.  We chose Select because it had University Hosp Madison drs who saw the patients and part of the hospital.    No one gave a time limit.  Said as long as needed, and improved, etc.. and I KNEW that when he got to SELECT, with University Doctors going to see him, with what he HAD, AFM and Lupus, even with Badger Care, being a Research Hosp, I told Mike....it won’t take the doctors LONG to find “something” to get him over to University Hospital!!  As they are going to want to do complete work over on him... as they will be salivating to try to figure out the “WHY” and “HOW to cure”this!    Yup, only took a urinary infection that oh, wouldn’t go away in 5 days...He had SOOOO many SPECIALISTS coming over from University Hospital to see him at Select!    Then an infectious Control dr came asking me a hundred questions, a Rheumatologist.. then next day the Pulmonologist came back and told me, we are moving him to University Hospital tomorrow because of this urinary tract infection.   Ok!   Great!  Right where “I WANTED HIM TO GO!    They, sooo many specialties tried everything!!!!   And he WAS SADLY sooo much sicker than a urinary tract infection when they got him there.   SO GRATEFUL someone was looking over him, as you have read.. all the things when he got there.   Blood clots in abdomen..etc.    but I think 6 weeks..or so... none of it they tried so hard to do to help the AFM.. is going to work.    They did GIVE HIM HUGE RELIEF from that HORRENDOUS, and I am not exaggering pain throughout his body.  Sooo grateful.   And the care their was outstanding.. so kind and loving, thoughtful.   The staff in that intermediate care area.   Even if they didn’t have Jackson as a patient, they ALWAYS KNEW what was going on with him, stopped in and checked on him.  Came in to cheer him up.  

When we left, we didn’t know at all by what ANY DR told us that this was all.  The week before he left.  I believe I wrote about the conference meeting in his room with all the specialties, Mike on speaker phone.  The neurologist talked about in few months if nothing changed, could try something risky...very vague now that I think about it, and Hospitalist mentioned Cytoxen which he had many IV’s of when had Lupus Nephritis.   And then few mumbled between them, no....then Neurologist told us that “THIS, whatever THIS is if REALLY a THIS!” Had high risk of causing J cancer in his future.  And I spoke as thought I knew what J would say.  Then turned to J aNd asked him if I conveyed what he would say correctly, did he have anything different to say, add or change.  He said no, just strongly agreed and why did he have to wait few months!  As I said. “J has had so many drugs given to him in the last 18 years since he was diagnosed with lupus that he can get cancer from..like Rituxan, Cytoxen, and more..and with his lupus alone and zero Immune system to fight infections, he and we have known his risks of not living out a long life.   And I believe what is more valuable to J is his quality of his life RIGHT NOW and sooner than later.  So cancer later in life, means nothing”!  

Well, this case worker, then told Mike just few days being back at Select that J was NOT PROGRESSING..and that we need to look at a different place for him to go..longest he could be there was approximately 25 days.  Which is around this week.   Now, he just got there, coming off of 6 plus weeks of being SOOO SICK, going through SUCH PAINFUL things, 2 surgeries, 4 anesthesia’s, so many tests i would have to go on my calendar and start counting..not counting blood tests, etc.. and just had 2 Iv’s put in for low Magnesium/Potassium and started on antiobiotics AGAIn for same infection he has had since Dec. 26th..but he IS NOT PROGRESSING as far as doing enough HOURS on Respirator per day.  OMG!   Gives Mike names of only 5 places in WI that he is able to go to!   One in Wausau, one in Manitowoc, other 3 in Milwaukee area.  

None near Madison drs.   That night I stay up most the night searching every type of site I can on all 5.. all horrible reviews or on Nurisng Home sites.  See have to have an RT, take people with trachs on Respirators..  only one possible one.. Wausau.   All else 2 and under ratings everywhere.  Well I have to see these places. 

And we almost signed that day a contract ONLINE for dif apartment for 3 more months could bring cats... MUCH more expensive than one we have...as told in late Nov.   now is SEASON starting and apartments expensive....would think w students leaving soon opposite, not.  Guess many rent for season and lakes, close to Dells and Chicago.

i Tell Mike just don’t say anything to her until I have meeting Monday.   She comes back Thurs to him.  As he no way can progess.  Have almost 3 hr meeting Monday.   Well, a little reality check for me.. start of... took me many dif ways rewording questions to get answers out of them...why meeting SO LONG.  But first said would only get 3 days notice as all Badger gives them by notes they receive as to their decision he isn’t progressing.  Said STAFF and Directors writes notes...and these are OPINIONS...does a DR have input?  At weekly meeting after reading notes. I said so someone HERE has to know week BEFORE it gets to BADGER CARE with all the years of experience here, that pretty good chance they are going to give a patient a 3 day notice, right?  (That took many dif ways to get a YES! Out of, but yes).  So couldn’t Someone on your staff talk to the patient or family.. that we feel it will be (time)?  Or us?  Well, I suppose!   

I said I would like to talk to one of the Pulmonologist about Staff saying J not making progress, could it be arranged that I know hours around tomorrow so I am sure I am here if early, etc. Yes.  And talked to me about having him at home.  If I wanted to talk to someone about. Yes, most definitely I said.  So met with that person Wednesday.  

Meeting with Pulmonologist..Jackson and I:   I guess I was in a bit of denial when at University Hospital or just sooo busy with all else, just not thinking.  As I kept even saying he has to get back to Select Hospital so they can do PT/OT on him as he has lost all his strength here while sick..as they couldn’t do any there on him there.   WELL, the Pulmonologist Told us.. Jackson will NEVER have PT/OT because there is nothing left, all atrophied, to work with him! 😢.  And that IF he cannot build of Body Strength, he cannot build up LUNG strength.   To think of it like any person in sports, or person trying to improve endurance... they work the. body to get stronger.... to get their Lungs Stronger..to last longer at whatever they are doing!

And since Jackson cannot build up ANY Body strength, he will never build up any Lung strength.  Therefore, Jackson will NEVER get rid of the trach or the respirator.   And he completely Explained where he is at on the Respirator, and what he would have to do at EVERY Level and for how many hours..lots at every level... sooo understandable when explained...with where he is, and with not being able to get any more lung strength.   They are continuing to have him wean on the respirator but that is only so he can have more ability to use the speaker device.   when he wants, talk longer on it.   Not weaning to get him off Respirator.  The FIRST ABSOLUTELY DEVASTATING news.

Then the Doctor told us that the specialists had talked.   And with the high dose Prednisone he had. And the Plasmapheresis given, which truly should have reversed something right after given each dose IF WAS GOING to work, but did not.   Yes, said maybe could after.  But no chance anymore.   And with him having no working Immunoglobulins, and all they have tried, the infections.     The doctors feel if he has any reversal of any paralysis it would be very, very minimal.  Not an entire upper or lower body, head, arm, etc.  maybe thinking, finger...  So he told Jackson and I he would stay a Quadriplegic.  The SECOND ABSOLUTELY DEVASTATING news.., for Jackson, for Mike and I for our son... 😔😢

Jackson has told me since shortly out of sedation at St Vts.that he didn’t want to live if he couldn’t get his movement back in his upper body and head.  As without that he has no life, had little before.    He has continued to talk about this since.  Had even asked me once if he didn’t to him and I to move to Oregon where they have Dr assisted suicide.  Well, Select Hosp is like Peyton Place.

The Doctor Told Jackson he heard he said that and felt that way.   Understood it.  And that he has a Living Will he signed that says he does not want to live on Life Support...and that’s how he is alive.  By a Respirator and being Tube fed.  Only difference is that instead of being in an accident or something where he may not be cognitive and parents or POA would follow his wishes to be taken off the respirator peacefully.   He is cognitive and HE IS ABLE to make that decision legally himself in WI.   They as a Pulmonary Hospital have assisted many in his situation... it is peaceful..and HIS Decision..

Jackson is seriously thinking about this.  He first HAD wanted to talk to his brother. But we have been  unable to reach him as of yet. 

As hard as this is to hear as a mother, as I cannot speak for Mike.  Jackson and I have talked about this since mid November and oh I DO NOT WANT TO LOSE HIM AT ALL OR ANYMORE CHILDREN!    But, this is NOT about me, not about Mike!  He has fears with Mike and my ages of what would happen to him when we cannot take care of him anymore and when we die.  As we CERTAINLY would GET A HOME THAT HE WOULD LIVE WITH US ASAP!!!!!   And after we are gone, we have a guardian in mind... but we know even that person if that extended family member agreed, he would need to go to a nursing home.  

As he said to me.. This is NO LIFE NOW MOM!   And would be NO LIFE AT ALL without you and Dad!   

Not a time one can be selfish and think about having your child here for oneself...living lying in a bed, can’t move, can’t eat, drink, talk, a big machine attached to breathe...looking out a window and watching tv.  Take for a car ride whenever you can, but has a respirator.   Have an RN...that doesn’t bother me, for him 12-15 hrs a day to help take care of personal needs with us.    

Not a life i I would want for myself at close to 62, I’m not Jackson, but I don’t know that I would want it..he will be 26 on March 21st.     His choice.. 

i went to Wausau home..Would not put a rabbit there.  Got letter from Case Worker Thurs..  she’s on vacation this week.  I had told her I went to Wausau last week and my thoughts.  We already know Manitowoc is out.  I told her I would visit the Milwaukee ones next Sunday or Tuesday.  She said well I won’t be there next week not to give you notice.  But you NEED to see Milwaukee ones so have Decision week of Feb. 11th!  

I have NOTHING Else... Depleted, Exhausted, Could not write this before now.  Love my boys. They both need prayers.   

I need STRENGTH... to help one that wants it, one that does not.  

THANKS TO ALL who have CONTINUED to send BEAUTIFUL NOTES in cards...THANK YOU for NOT FORGETTING JACKSON..and for continuing to think of him, praying for him, caring about him...you have NO idea how it touches him.  He just cannot believe it.   It gives me tears of happiness. 

And to those who can and have taken the time to visit him... oh he needs that so!  He is sooo lonesome and lost in his world.  Hard to communicate all that is going on in that mind.. he gets a little out to each new person that visits.  

I just HATE the thought of him having to go to one of these places, if he decides this for now. Or whatever he decides WE ARE THERE!!!  I am afraid for him no matter what!

We all take in things differently, Mike is having a more difficult time...not sure if the word is..accepting what the doctor said.  But he did not hear it directly.   Suggested he have the doctor explain it to him.  

I don’t know what else to say..

Love to all!
Nancy 





  








.







January
13
2019

Jackson moved to new location

Jackson was moved yesterday, January 11th to:

Select Specialty Hospital
Room 473
801 Braxton Place
Madison, WI 53715
608-260-2748.   4th floor nurses desk direct
608-260-2700

Last time I journaled was December 26th.  Jackson had completed his 6th Plasmapheresis and had one more to go.  He never received the 7th one. And remained at University Hospital until yesterday. 

On December 26th Jackson became very sick.  His HR went up to 170, temp up to 103, BP was high then went too low, his Drs assumed he had Infections in his body.  Everything was cultured, every SITE, PICC line, Feeding tube line, Plasmapheresis line, urine, sputum, Cath taken out, had 3+blood in urine which is high.  Many other lab tests done. Infectious Control was called to see him and found the upper right quadrant of his abdomen was tender and distended so they order liver labs. An EKG, chest x-ray, scan of abdomen were all done.

Every culture was positive for Pseudomonos and Negative ROD.  Then ALL lines pulled accept for Feeding Tube.   These are common infections when in hospital a long time, but bad infections. He was put on 2 very strong antibiotics..Tobramycin and Meropenem. He was on these for 2 weeks.

Two IV lines were started in his right arm with much trouble as he is a difficult IV start.  An IV specialist was called to his room to put in lines after failed attempts by his nurse.  Regular lab personnel  could not draw blood from him.  ICU lab personnel were called to his room to draw blood.  He went through SOOO much.  All the while feeling like "HIS HEART was going to FLY out of HIS CHEST onto the CEILING" for ...a few days.  Was so difficult to see as a mother.     

They also did another ultrasound of his stomach to look at the kidney stones, stent and bladder.   He was taken off Heparin as the iV line was needed for other things and changed to Eloquis pill, that they could dissolve and give through feeding tube line.  Jackson was SO scared and so was I (inside)!  I of course, stayed overnight with him during this time.

   He had a happy moment on Thursday that week when a Hospital Dog visited!  This one was a very nice German Shephard.   Made him SOOO happy.  His second dog visit!  His first dog visit was a beautiful Golden Retriever who came back to see him his last night at University Hospital on Thursday night. This Made Mom happy to see Jackson happy!  I lost it a bit though and had to sneak out of room...to cry for a bit... All caught up with me... 

He was improving.  The drs took him off the stronger antibiotics and put him on one different one.  It is important to save the Strong ones for serious infections in the future.   But it took only 2 days and HR and temp started spiking again.   Meaning this antibiotic was NOT covering One or more of the bacterias.  Question was...which one?   Suspicion was urine or sputum.  Urine tests done. First 3 specimens were not good as was skin in them.  Sadly had to get one from him the painful way for a male who is feeling miserable already.   Watching my second time.. first when TRIED Lumbar Puncture in room, Jackson, scream in pain IN SILENCE....OMG.... AWFUL for a mom... Million times worse for him!   My boy... 

Jackson stayed on antibiotics until January 10th.  January 8th he had the surgery to remove the kidney stone and stent that was placed in December.  All went well with that.

He had fabulous Respiratory Therapy Care during his stay at University Hospital and that is so much stronger.  He has been using a "speaking valve" the last few weeks once a day for up to an hour!   SO Wonderful to hear his voice again.  Not as strong, but we don't care..a start.   And he Yawned I think that was over a week ago.  He Yawned, I Yawned... And he said "I Yawned". I said "You Yawned"!!!   We had not realized he had NOT Yawned since before Nov 3rd... Strength in his breathing and vocal cord area!!!! Yeah!!! 👍.  

But Jackson has had MANY very down times.  Started during the plasmapheresis.  As the best hope this to reverse any of the paralysis is during the time it is being given.   And Jackson has had no improvement or change in his paralysis.   As anyone can imagine, this has been very disappointing to him to say the least.

It in NO WAY means there is no hope at all, as there is still hope after plasmapheresis AND with Acute Flaccid Myelitis itself, reversal of partial or complete paralysis can and has happened For many over time.  He knows that his decreased immune system because of his lupus, does not improve his percentages.    But WE. KNOW Jackson's History ever since he was diagnosed with Lupus at age 7!  We know he has been told he would Never, but DID!  That his odds of surviving because of this or that were low, but he is here at age 25 and alive!  And so much more!   As we say and remind him and all, LOW ODD's are NOT MEANT for Jackson!  ❤️

Now we are back at Select Speciality Hospital.  Jackson I must say is NOT happy about this.   This hospital is where he needs to be now to work with the PT's, OT's, ST's and RT's.... To regain all the Physical strength he lost over the last few months to move on.    He has lost a little over 80 lbs.. WAY TOO much of it muscle LOSS! 

Select Hospital is his best option as long as he has a tracheotomy and respirator.   Also, with the need to regain so much strength, before he could move to another rehab facility.

Jackson is VERY LONESOME... PLEASE, if anyone gets to the Madison area and has a short time to stop and say hi to Jackson, he would enjoy a visit.   I will put Mike and my phone numbers below.  You can text us if you want to check ahead, short notice is fine.   Jackson has LOVED all the postcards and cards.  I wish I could write back to all and tell you.   He is in for a VERY long haul here, please keep sending them when you can!

Happy New Year to all!   And wishing you and and your families GOOD HEALTH and SAFETY this coming year!

Love,
Nancy

Nancy:. 920-621-2982
Mike:. 920-680-0577
  
 Nancy email:. mnkonecny@gmail.com
 

December
27
2018

Our Hope today is that All of you Treasured your Loved Ones, and a Safe Holiday!

We had a Nice Christmas Eve and Day, Jackson is still at University Hospital. Both Mike and I were in Madison Monday until today.  Our neighbor took care of our cats.  Oliver came to Madison Christmas Day afternoon.  

Since i last journaled so much continued medically for Jackson.  I looked back and the last day I spoke about was December 10th!  Wow!  Was his second Plasmapheresis.    The Pathologists said 7, then 5, then back to 7.  Today he had number 6.  Friday will be his last plasmapheresis.  Then the Rheumatologists are considering another IV of IgG.  Assuming nothing changes, Sat or Sunday Jackson will go back to Select Specialty Hospital in Madison for continued Rehab.  He has become quite atrophied.  And needs more PT, OT, ST with work with Respiratory Therapy with his breathing on own for periods of time off Respirator.     He is scheduled for surgery back at University Hospital on Jan. 8th to have his kidney stone, stent and any other small stones removed.  And possibly more of a Nephrology workup then.  

Respiratory Therapy added an Oscillatory Machine 4 times per day around December 14th.  Because Jackson is unable to cough on his own, has always had the consistent cough and just normally secretions go down a person’s throat. This runs for 20 mins, this gets out whatever is caught deep to help prevent any infections.  This has truly helped him and feels good to get this out. 

His temperature fluctuating into the higher range, heart rate and high blood pressure were not in normal range since November 3rd, but have improved overall in the last week or so.

The 5 days of 1000 mg IV Prednisone and daily 60 mg IV Prednisone have greatly decreased his inflammation, so his EXTREME body pain has lessoned.   He still has back pain. This has helped his days and nights of course.   

Around December 14th when Jackson was having the issues with the stones, high temps, questionable pneumonia which ended up being ruled out...he was put on a Broader range antibiotic.    An Ecchocardiogram also was done then.  He has a past history of a lot of fluid around his heart, and has had many of these done during the years.  The doctors decided to do this when he was continuing to have the high blood pressures and pulses.  Results were okay for him.  

About a week before Christmas and through, Jackson hit a normal phase according to doctors and I think....was handling this so well, much longer than most. The phase is that.... he just had it and lost hope, emotions were raw, had all the questions for me that I had in way back in my own mind... those tough ones.  He mouths words, TOUGH, very Tough when talks fast and frustrating to both sides when can’t figure out.  When emotional time like that, confusing words he is saying not a good thing.    But we had a good honest talk.    Assured him, we can’t give up hope, but whatever happens... we will be here, and when we aren’t anymore someday....... was HIS Question and Very Understanable as Mike and I are Not Young Parents!   This is also something “I”the worrier and planner, had way back in MY MIND. I still do!  Worrying and thinking over myself.   ASSURED Him, he KNOWS his mom and IF this was a known need..it would be taken care of in writing ASAP!   I told him HE NEEDED to use HIS ENERGY to get well and leave that to his parents.  

This is normal but very sad to us, this emotional phase continued from sad to an anger at what it is phase. As none of his paralysis has reversed, YET! . 💔😢.  

Yesterday, Christmas Day, we all were very sad thinking of the loss of Mike’s sister, Sandy and her husband, Fred.  We lost them May 20th and June 24th.  We always spent Christmas Day at their house.  But Jackson especially had it on his mind yesterday and broke down a few times...with emotions about how much he missed them.   Understood!   Not the Christmas ANY of US would want.  But we were TOGETHER...and that is what was important yesterday, if even for a few hours. ❤️🎄. 

Mike and I will be here together again with Jackson for New Years Eve....to RING IN a BRAND NEW “HOPEFUL NEW YEAR, 2019!    

Wishing ALL of YOU, HEALTH and Love for 2019!   

Nancy, Mike, Jackson and Oliver

December
18
2018

Thank for your Patience...December 17, 2018

First, I apologize to those who have kindly sent mail to Jackson and it was returned.  I mistakenly put down UW Madison Hospital instead of University Hospital.  Although Post Office sent a lot of mail through also.  Correct address, but post office could not put that together.  So here is the correct address for now.

UNIVERSITY HOSPITAL
600 Highland Ave
Madison, WI. 53792
Attn: Jackson Konecny.  Room D6/558. 
608-720-5743. Room number 

I Have been trying to find time to do a COMPLETE update after Jackson arrived here every day it seems.  But EVERY DAY, so much happens, and then so tired or I was able to get back to Green Bay twice for a days.  I thought I would have time then.  No!  Way too much to do with appts, pets, and last week Xmas!

I am have to do this piece meal as I am at hospital and don’t stay very late.  So am just going to start so I can get something out to all of you that have been caring and sending your prayers.  Jackson has been so strong while here with going through so much.

After he and I made it through the first night of THE MOVE that first night on Thursday, December 6th.  If I wrote some of this last post, apologize did not reread.   They wanted a repeat of MRI of brain and spine.  And spine with contrast.  They were able to get all but MRI with contrast, as Jackson had so much anxiety.  And for Jackson who has had SO MANY MRI’s, CT Scans, etc... never ever bothered him EVER...this is all new for him.  It is just DIFFERENT the radiologists said when in an MRI machine when have a trach and hooked up to a Respirator and no control of your own breathing.  I can certainly understand THAT.  So quality was not perfect.  But results showed maybe slightly more swelling and inflammation than the ones done at St. Vincent’s.   And MRI with contrast put on hold, if anything done with anesthesia and if truly needed. 

Concern with his temp fluctuating still up to 103 and STILL does and BP sand Pulse still going in high ranges is constant issue.  He will be having an echocardiogram at 4:30 today.  Why not earlier, because he has had SO much done between then and now.

He has a Chest X-ray...has had a few since here.  Those remain good.  

He had had CONSTANT SEVERE BODY PAIN, especially in his neck and shoulders, ever since Feeling came back in his body.   The day after he arrived at University Hospital while in Radiology for MRI’s...they brought him one AMAZING mattress!  This one has many different settings to control, softness/hardness, pressure, etc.. and HAS made such a difference in his comfort of his back, neck and body pain.  

He was seen seen by Rheumatologist and Full labwork was drawn for his Lupus and to evaluate any relationship with anything Autoimmune. 

12/8. Saturday
Had CT Abdominal Scan.  Blood clots were found in his Iliac veins mostly on his left side.  Started him immediately on Heparin, as a blood thinner that can be stopped immediately when any testing needs to be done.    And his 4th Lumbar Puncture since Nov 3rd was scheduled the following day.  

The scan also showed a kidney stone on his right side.  He has had these 3 times in the past.  Meds were given to try to break it up.  This was unsuccessful.   On Wednesday night, Dec 13th...he went into surgery to have a Stent placed as could not go in surgery because of other treatments being done then.  And a few smaller stones that broke off were removed. He is tentatively scheduled for removal of stent and stone on Jan. 8th.    They are also concerned about a possible clot behind the kidney.  He will receive a full nephrology workup then.  As before moving to University Hospital blood was in his urine.  A 24 urine has been run.  

12/9 Sunday 
Knowing the past experience Jackson had with the difficulty the first Radiologist had not being able to find any Spinal Fluid.  And difficult time, but SMALL amount was found by Dr Hank Feider 2nd time and 3rd time same thing.    The Hospitalist TRIED very hard to talk University Radiologists “Out of there MANDATORY..FIRST TRY for Lumbar Puncture..MUST be at Bedside”...but was unable to do so!  

The Radiologist team arrived in Jacksons room that day and YES "attempted" while I held his head/face.. and he was silently Screaming out in agony, them ASKING HIM if it HURTS, when HE CANNOT TALK or VOCALLY SCREAM, he and I in tears... ME SAYING.."YES, YES..it hurts.  Them, let me try again.  I am saying HE IS DIFFICULT TO GET FLUID... Hospitalist recommended to do with anesthesia to them.  Puncture NOT successful, Rescheduled.  😢

Rheumatologist in the meantime wanted an MRA to look further at abdomen to be sure not a Larger clot.  And also in discussion with other Physicians on Jacksons case, wanted to start a 5 day course of 1000 mg per day of IV Prednisone asap!  As all felt the Myelitis could be Immune related, fluctuating High temp, Pain, etc.. related to his Lupus and Immune System.

But until his other Main Medical issues were taken care of and most of tests done, this could not be started.

Sunday night the Hospitalist talked to me, said planning to do Lumbar Puncture and MRA under Anesthesia next day, Monday.    

12/10 Monday. 

Heparin stopped in am.  1 pm With anesthesia MRA done first, then moved to different room and Lumbar Puncture done.  Took a LONG time in the room to gef the Lumbar Puncture fluid.  Jackson was under anesthesia when moved down hall...followed by team right by me.  Got fluid, some stayed here.  Some sent to Mayo. 

Evening over night...Round 1:  1000 mg IV Prednisone administered. First IV Solumedrol has to be given.   Jackson had very rough night with this, no sleep.  Was decided next day...NOT to give during the night!!!! GOOD IDEA!!!!!! 

12/11. We put a Small Christmas Tree up in Jacksons room with colored lights.  He really likes it!   He has received cards and gifts transferred ovrr from Select Hospital!    Not all have been opened.  He gets very emotional in a “HAPPY WAY” when we hold them up and he reads them..,as with the Caring Bridge messages!    He can’t GRASP...never thought... that SO MANY people Cared about HIM ANYMORE...or would even REMEMBER who he was!    Guess sadly there are are many who WONDER that “if” something tragic to happen to them!    So “THANK YOU from THIS MOM...for not Forgetting and thinking about her SON! ❤️  As the TEARS.. are all Love from his heart.  

Round 2:. 1000 mg IV Prednisone during afternoon.  Went much better 



*** He has his very down times of course.  But bounces back as he has All his life. TODAY, December 17th has been a VERY rough emotional day for him.   He finally is napping right now!!!!


More later..  to be continued .. Thank you,
Nancy 



December
8
2018

Friday, December 7th

Yesterday afternoon at Select Speciality Hospital, the Pulmonologist from UW Madison Hospital that regularily visits Jackson stopped by.  As the day before an Infectious Control Dr also came to examine Jackson and discuss Jackson’s history with me.   The Pulmonologist said that he, and a Group of different fields of Physicians that have been caring for Jackson from UW Madison Hospital discussed that it was best to move him to UW Madison Hospital at 600 Highland Dr.   

For one, he has continued to have his temperature fluctuate to 103 even though his urinary tract infection is gone.  They cannot find any other source to be causing an infection.   Mike and I had wanted a Rheumatologist involve at St. Vincent’s, but none were.  U.W Madison Drs wanted a Rheumatologist to be involved to look at the possibility of the temperature being Immune/Lupus related, while looking for other sources of infection.  And at UW more immune testing can be done.  The Rheumatologist called me this morning at the apartment and also met her when arrived during exam and more questions about history, etc...

The neurologist wanted MRI of the brain and spine redone, he is in having that done right now.  Chest X-ray done again, about the 4th since arrival to Madison.  And another Lumbar Puncture is being scheduled by a Different Infectious Control Dr that has taken his case, that came in today.  He has a few other things wants to test for, although he said Dr. Luloff, fantastic physician, knows her.  Did not miss anything.  Just has a few other ideas to rule out.   Another Lumbar Puncture not a happy thing for Jackson, as the two that were successful for him, took a long time to get any fluid and painful. 😢.   A CT Scan of the Abdominal area is also scheduled.

Last night was EXTREMELY ROUGH with Move for Jackson... as a bed was not available until after 7 pm.  Ambulance arrived to move him about 7:45.  He has MISSED pain meds and anxiety meds already.   Then... I blame myself...as I KNOW and didn’t think far enough ahead THIS TIME FOR HIM 😡 at myself?    But I know..and of course, it takes SOOOO long when get to a hospital for new MAIN physician to get all MEDS to look at what he was on at Select Hosp...then decide what to keep on, what to change.   And every 1/2 hr night went on, my boy is hurting more and more, his anxiety from JUST what he is dealing with since November 3rd, then change of place, new staff...and his new nurse of course just got dumped a very difficult case on her... and leaves at 11... with tons to do!  And Jackson has so many needs.   He is in INTERMEDIATE CARE WING, 8 Units.  Each has a nurse, but one CNA for all 8.  So to move him need THAT CNA!    

Not going to happen...and doesn’t.  So.....he is laying for hours in pain.. I cannot lift him on one side myself to put pillows under him.    He is crying in pain., I am heartbroken.  Trying my best with neck, head, topical pain relief.

Meds come through at 11 pm ish.  Pharmacy gets them up at 12:00 pm ish..THIS I KNEW also.  Then PICC LINE won’t work for some that go through that way.  Some go through IV, some mixed and through feeding tube.  

Gets one dose. Not touching him by 1:15. I know he can get his other anxiety meds close together.  Ask nurse.  She says oh yes, he can get the others!!!  I know...Please give them to him so he can settle and sleep as pain and this evening have been so difficult on him...and “me” as trying to help him.  And I ended up crying with him sitting on his bed, telling him I don’t know ANYTHING else to do, Jackson to help you not hurt.   I’m so sorry and sad, feel helpless.  He said he knew and ok, he loved me..    

2 pm his eyes were closed and he dozed off.  And I left for apartment. As really and Airbnb...and owner had tonight rented.  We knew it.. I had to be out this am by 11 am.  Called owner last night during this...said noon ok!    

AND... Wednesday night, Mike was on way home from working in Wautoma and there was a car right next to him.  No where to move.  5 deer ran out...and one broadsided him on passenger side of his car bad.   Lots of damage.  But THANKFULLY he was ok!   Garage close,  pulled off all metal.  Tire bad on that side.  But could get home.  Got new tire Thursday and not bent underneath.   Jackson’s car sitting but needed work.  That went in for repair yesterday and today.    As I have his sisters Sandy’s car using.  As mine is finally in getting fixed from when I was sideswiped in June by semi.   Jackson’s does not have AWD, but looks like weather okay Mike says next week for him to drive it to Wautoma.  Mine won’t be done.  And crossing on highway...maybe.  I may stay longer in Madison...if still a lot going on with drs, tests here. An both here.  OH MAN...What next!   

Ask neighbor to check and feed cats Monday night.  

Just heard Jackson back from MRI’s.   Had rough time with spinal. Could not get it with contrast. Jackson huh anxiety.. he has had SO MANY MRI’s in his life.  Never has ever bothered him.  But with trach and Respirator.. who wouldn’t.  So nurse just told me, will see what they got.  If want more will redo with contrast under anesthesia. 😢

So... New Address for Him:

UW MADISON HOSPITAL
Attn: Jackson Konecny
600 HIGHLAND DR
MADISON, WI 53792
ROOM:  D6/558

If sent anything to Select Hospital..they will forward.   And time at UW Madison Hospital is unknown.  And prob will go back to Select Hosp at some point.  What we know now, but could change.

My Guy is waiting for me..

Thank you for all the wonderful thoughts, love and prayers.
Nancy