Saturday 4.19.09  (new photo added)

The twists and turns of this journey continue….it has been longer than you or I expected since I posted my last journal entry.  I have made more than one attempt at getting an update posted.  A couple of weeks ago I thought I’d get this update posted for sure when I was admitted to the hospital for two and a half days.  Yes, I was admitted to Mat-Su Regional with a staf infection.  I had tried to “gut it out” so to speak for about 4-5 days with no improvement.  The infection was not responding well to the oral antibiotics .  Spending two “spa days” J (not)  in the hospital with IV antibiotics definitely improved the situation.  I had Superman there by my side, but still experienced a few problems with a medication reaction and a nurse that wasn’t a lot of help!!  At the same time, Rhowe ended up with a staf infection and one flared up with Joel again too.  They both responded to oral antibiotics and didn’t have to join me in the hospital.   Yes, just a few twists and turns.  I’m doing fine now, Rhowe is doing fine and Joel has another “spot” we are treating with oral antibiotics…Where does this bug come from??  After the almost nine months in and out of the hospital, from what we understand…..it was inevitable.  Why now??  My comment to Superman was “you are getting better and the rest of us are falling apart!!”  Reality…this is a good thing.  However, I think that with Joel getting better, my body can finally say…hey, I’m done…I can’t do this non stop… I’ve got to take a breath….thus this bug got me after 8 months of survival mode.  Plus, most of you probably don’t know that in January I also started working full time teaching Medical Coding and Billing at our local Tech High School.  I enjoy the job and the students.  But it has not been an easy transition starting in the middle of the school year as a first time teacher, teaching new classes, delayed book delivery, etc.  In addition to everything else we’ve had going on in our life, it has been like running a double marathon starting at 5:30 am every morning!!  Just a couple weeks to go…..breathe…..  O.k. got it body…I think at this point there is light at the end of the tunnel!!!  Needless to say, I am looking forward to a “do ya think” much needed break….J

However, there is more to the story leading up to that opening paragraph.  Joel is doing great!!  He has been without a cane for over 3 weeks!!!!  He walks with a limp.  But the good news is he is upright and moving forward.  Joel has PT 3 times a week still using the Hydro Track and doing dry-land work outs.  When he doesn’t have PT he heads to the AT&T center just down the road from where we live.  He works on his upper body and usually runs into someone he hasn’t seen in a while and spends lots of time talking….  I find it funny how much time he spends “just talking”…I think it is great since he always gave me a hard time when I would take longer when I was somewhere because I was “just talking”. J Funny how things change. J

He still amazes me with his upbeat and positive attitude.  There are days when he gets down, but he realizes that and will tell you….every time he starts to think there is no light at the end of the tunnel he will meet someone who encourages him or tells him a story of someone else who overcame great obstacles and give him hope.  We continue to be blessed with the most wonderful community of family and friends near and far as well as complete strangers who brighten and bless our days.

During our school spring break we decided at the last minute to try and get in some college campus tours.  I scrambled to make arrangements that would have the least negative impact on Joel traveling.  I was able to get flight arrangements that allowed us to fly everywhere we needed to go instead of flying to one city and driving everywhere…we flew to Seattle, left the next morning and flew to Pullman, Washington/Moscow, Idaho to visit Washington State University and University of Idaho, then it was back to Seattle again to catch a flight to Portland to visit Portland University.  While in Portland we celebrated Rhowe’s 18th birthday and surprised him with dinner at PF Chang’s his favorite restaurant.  We don’t have one in Alaska, but over the last several years it seems we have always been traveling during spring break and his birthday.  Whenever we can we try to find a PF Chang’s.  After dinner at PF Chang’s we went to a Portland Trail Blazers game.  Saige was funny.  She asked Joel who these guys were?  She doesn’t keep up with the NBA teams even tho she loves to play basketball.  When he told her she was watching the NBA; Portland Trailblazers and Dallas Mavericks…her face lit up with Really?  Big smile, so cute!  It was a lot of fun, but we all concluded that high school basketball is played at a much faster pace….go figure?  ;-) We ended our trip with an Amtrac train ride from Portland to Seattle on Thursday before flying out of Seattle at 6 am Saturday morning.  We re-connected with our fabulous new friends and support group while we were at Harborview, Dana and John Fisk.  John picked us up at the train station and we spent the evening at their home.  John and Dana served a fabulous dinner and wonderful hospitality.  It was so great to see them again and finally meet the rest of their wonderful family.  The next day Dana took us back to Harborview.  It was a bitter-sweet visit.  Of course we saw our Hero, Dr. Tran.  On our way to his clinic we passed a conference room and saw Dr. VanEaton.  He was very surprised and impressed when he saw Joel.  He made the comment how good it was to see us.  He said it is not often that patients come back to Harborview.  It was great to see him.

Dr. Tran was impressed as well with Joel’s progress.  He was very impressed with the way Joel’s left leg looked after a week of being on it with very little reclining.  He said if that is all the more the leg swells….we won’t need to do a bypass to help get the blood back up due to the iliac vein being ligated. The smaller veins and capillaries are doing their job, getting larger to help with the return circulation.  He had originally told me that if necessary, he could do a by-pass from the left leg to the right leg to help alleviate the swelling in the left leg.  PROGRESS!! J  Dr. Tran reminded Joel that the last time he had seen him, that Joel had told Dr. Tran that he would be happy walking in a year or two!!  Dr. Tran said “look at you after just 7 months, you are doing fantastic….I think you just need to get on with life.”  Music to Joel’s ears!!  We were/are so fortunate and blessed to have met Dr. Tran and to still a connection.  We all know where we’ve been and how far Superman has come.  Amazing.  I am so grateful to be able to have good things to write about.  Thank you Lord!  

We left a stack of CT scans with Dr. Tran.  He had tried to get us an appt. with Dr. Routt while we were at Harborview but wasn’t able to arrange it.  Dr. Tran also told us that he would run the CT scans by the urologists there at Harborview to see what their thoughts were on options to repair the damaged ureter….if there are any.  If the ureter cannot be repaired, it means periodic long term stent replacement and possible loss of the kidney on the left side….  Dr. Tran was so gracious to offer to talk with the urologists and also pass the CT scans on to Dr. Routt and an xray that we also left with him.  The xray was taken in early March of the hip.  The good news was that our Ortho Doctor here told us that the “non-union” was closed!!!!  He had told us back in December that he didn’t think it would close since so much time had passed.  More prayers answered!!  Thank you everyone!!

We left Dr. Tran and headed to the cafeteria for lunch.   Remember, Joel never had a chance to actually dine in the cafeteria and yes, even the kids were excited….for some reason they like hospital cafeterias!!  We were also on a hopeful mission that we might just run into Dr. Routt.  I always joked with Dr. Tran that if he wanted to find Dr. Routt he just needed to hang out in the cafeteria!  Dr. Routt always meets the families of patients in the cafeteria and draws out the surgery on a pillowcase.  J

As luck would have it, we no sooner sat down at a table and Dr. Routt appeared out of nowhere.  No kidding.  It was almost errie.  No warning, none of us saw him coming.  Suddenly was there sitting at our table.  We were all so surprised to see him.  Joel jumped up (sort of) from the wheel chair we had used to push him around the hospital to shake Dr. Routt’s hand….  Dr. Routt was surprised to see him getting up from the wheel chair and told him he didn’t have to get up….Joel insisted, shook Dr. Routt’s hand and proceeded to almost do a little dance in a circle for Dr. Routt.  Dr. Routt was amazed at Joel’s mobility….he actually asked Joel if he had had his hip replaced already??  Superman smiled and just said, no, this is all you, Dr. Routt!!  It was Great!!  You had to have been there! 

Dr. Routt said he would take a look at the CT scans and xray.  We chatted for about half an hour….Dr. Routt told us that the week before they had Doctors from Iraq and Sweden at Harborview and they were all looking at Joel’s scans.  

We left the cafeteria and headed back up to the ICU.  We saw almost all of the nurses who had cared for Joel.  Many barely recognized Joel.  They hadn’t forgotten, but geez, Superman looked so different now, so much better.  It was another happy reunion with some great folks who cared and played a big part in getting us to where we are today. 

It was so nice to go back to Harborview to say thank you!!  We were so happy to see everyone we had hoped to.  It also gave us a sense of closure.  Amazing stuff!

Rhowe has still not made a final decision on which college he will attend this fall.  The campus’ we visited were all nice, but also nice and expensive.  What sticker shock.  Deadline for a final decision is looming.  We need to finalize his choice in the next week.  Rhowe went to the Senior Prom last night.  He looked so handsome in his tux….biased opinion of course.  J  I’ll see if I can get a photo of the 3 of us from last night before Rhowe went to the prom.  You can see more of Superman’s progress…he’s looking a lot more like his old self.  J 

Saige has been in Arizona since Thursday playing in a huge basketball tournament.  The AK Lady Hoops comp/travel team took three teams.  So far they are doing o.k.   There are 160 teams from around the country playing in this tournament.  Oh, yeah, the hotel also has a waterpark.  Great fun in the sun for 25 girls from Alaska!!

We have since heard back from Dr. Tran.  The urologists think they can repair the ureter!!  It would involve another surgery back at Harborview…..something we could schedule perhaps this summer.  The thought process is that it is something worth a try versus continuing to replace stents every 4-6 months and eventually needing to lose the kidney due to the fact that long term stent replacement is not the best scenario.  Every time the stent is replaced Joel has to go under anesthesia.  Sure lots of people do just fine with one kidney, but if we can avoid it, as Dr. Tran told us “it leaves more wiggle room” should one of the kidneys develop a problem down the road…  We are considering this and will call to speak directly with the urologist in Seattle. 

Dr. Tran also told us that he had talked with Dr. Routt who’s advice to use the hip as long as he can….until the pain gets so bad he can’t walk….then we’ll talk hip replacement…..they will help us find the right surgeon…..thank you, again!

Over the next couple of weeks thing will not slow down.  I will be working until the end of May, Rhowe will graduate, make a college decision and probably get a job!!  Novel ;-)!  Grandma Stefanski is hoping to make the trip to see Rhowe graduate.  We just learned yesterday that she has developed a condition in her left eye…she will see a retina specialist at the end of the week.  Please help us pray that the doctor can is able to correct or improve the condition and that she will also be able to make the trip to Alaska for Rhowe’s graduation. 

Joel will also have the stent replaced in June at Mat-Su Regional.  He also needs to have another test run at that time so that the results can be sent to the urologists at Harborview to help them determine better the potential repair of the ureter.

We are also asking for prayers for Joel’s cousin Peter who was in a terrible motorcycle accident yesterday in New Hampshire.  We pray for his recovery and strength.  We pray for his wife Kathy and his son Peter and to give them strength.  We pray for all of the family.   We also pray for support.  As I learned through our journey that someone needs to be there with Peter 24 hours a day.  I pray that the hospital has a support staff like Harborview.  I pray that they have housing for the family.  I pray that they have doctors like Dr. Tran and Dr. Routt and ICU nurses as amazing as we had at Harborview.  And, I also pray that they are able to set up a Caring Bridge.org web site to help the family as well as help all of the people that need and want to know how Peter is doing.  It so lessens the stress of making phone call after phone call or answering phone calls or not answering or returning phone calls when you are so exhausted and can’t face repeating the same information over and over.  We pray for peace and a positive outcome.

As always, we thank everyone for your support, prayers, love, meals and concern.  Thanks continue to go out to the Colony High School Leadership class for the Friday night meals you have provided.  Thank you also, MOM for the yummy meals you have cooked with love to help me run this marathon.  Also a big thank you for keeping us moving forward towards Rhowe's graduation.  Couldn't do it without you!!  :-)

My apologies again for keeping everyone in MIA suspense.  I hope this update brings everyone “up to speed” and better explains why it has taken me so long to get an update posted.

With Love,
Mindy, Joel, Rhowe and Saige