November 8, 2015   This week we went to see Lynn's pulmonary specialist, Dr. John Gotchall.  The news here was not positive.  Lynn's latest pulmonary function test, post-surgery, had him breathing at 32% of capacity, the worst number thus far.  This may be because of his surgery but it is also worrisome because the hiatal hernia surgery was supposed to shut down stomach fluid from aspirating into his lungs and, I think, there was some expectation that his breathing would be better not worse.  The doctor said he was puzzled by the severity of Lynn's COPD and is looking for other causes.  To that end Lynn is being tested for a genetic marker for lung disease.  His father had at least 3 siblings who died from emphesyma (they did smoke).  We will know the results in about another week.  The doctor also wants a CT scan done.

What about the connective tissue disorder do you ask?  Well, that is a bit strange.  The surgeon I guess did not put anything about seeing one in her post surgery notes!!!!  Dr. Gotchall had a call into Dr. Dunst, the surgeon, but we have heard no results from that conversation.  We have a phone conference with her on Thursday this week so we will try to get this connective tissue disorder thing clarified then.

On the positive side Lynn is benefiting greatly from the BiPap machine at night.  He has moved into a soft diet (level 2) and we no longer have to crush his meds.  He will be on the soft diet for another week and then he can start having things like pancakes and ground meat.  He has lost weight which he needed to do for his lungs so the sacrifices are worth it.  Thanksgiving will be a bummer but by Christmas he should be back to eating normally.

Thursday, October 29, 2015  I returned part time to work yesterday.  The mornings are a challenge because Lynn has a persistent medical issue we hope can  be resolved soon. I need to be at home to assist.  Each day he moves better, however, and now has been oxycodon free for 48 hours.  That is good news because when oxy gets built up in the body, it causes sleep problems, hallucinations, etc.  Crushing his many medications is also a big challenge. He can swallow small pills,one at a time, with one sip of water, but Lynn takes many medicines and supplements and some of the pills are huge.  We try to mix them with something sweet but then everything he eats tastes like medicine.  Not fun!  All in all we inch forward with his recovery.

Tuesday we have an appt. with his pulmonary doctor to begin discussion of how to get him some help for his connective tissue disorder.

October 23, 2015  8:55 PM  We are home!  Lynn has some challenges ahead.  We have to crush all his meds and he will be on a liquid diet for 2 weeks but we can muddle through together and make our own schedule.  First thing next week we will seek out a recommendation for a rheumatologist to see if Lynn does have a connective tissue disorder.  All in all things have gone so much better than what we expected.  Thank you all for your prayers.

October 22, 2015   7:15 PM  I am posting a little earlier tonight.  Lynn and I are both wiped out and need some rest so I left him when the nurse was giving him a sleeping pill.  He had a good day today and the doctor said this morning she saw no reason he couldn't go home tomorrow.  They x-rayed his surgical site and there were no "leaks" so that is good.  He finally got to drink something in the late afternoon today.  For a week he is on clear liquids only.  He says it doesn't hurt to swallow so that is good.

Dr. Dunst shared with Lynn this morning what she is suspecting about a connective tissue disorder. He truly appreciated that may be we have finally got to the bottom of why he has had to deal with all these medical issues over the years.

We both feel this trip to Portland has been important and that all the prayers and kind thoughts have blessed our time here.  I even saw a long time friend and mentor, Chris Talkington, at the Mass I went to today in the hospital's chapel.  I completely did not think I would meet one person I knew here.  God is good!

One more thing - If anyone from Sweet Home has to come to this hospital for a procedure, they need to know the Providence Guest House is wonderful.  It is a counterpart to the Mario Pastegna House at Good Samaritan in Corvallis.

October 21, 2015  9:35 PM  Lynn went into surgery a half an hour later than expected so the wait was a long one today.  By the time he was done Andy and I literally were the last people standing in the surgery waiting room.  The surgery lasted three hours and he was in recovery for two. When we saw him in his room finally 30 minutes ago, he commented that this was a rough one for him.  He was in a lot of pain from the surgical incisions so they gave him a heavy duty narcotic that I knew would put him fast to sleep quickly.  Andy walked me back to where I am staying so I could get some rest and type this entry. The good news is that he did not go to the ICU afterwards which was a possibility.  The other good news is that Dr. Dunst fixed the hiatal hernia.

The not so good news (which I haven't said to Lynn yet; I am letting the doctor explain) is that when she was in there she found what she believed to be some rare connective tissue disorder.  She thinks it may be the explanation for all the weird medical conditions Lynn has experienced in his life. She said "rare" because she could not give it a specific name, it was that hard to pin down.  She believes when Lynn gets well he needs to go see a rheumatologist because it won't get better without intervention. But she really believes this could be the cause of the paralyzed diaphram, the weak esophagus, the skin rashes, and even the T-11 and T-12 spontaneous eruption 5 years ago.  She thinks it is all connected.  WOW!  That was alot to take in.  Soooo...... I am going to focus on getting him well from this surgery first, and, then, we will tackle this new info.  soon, but not now.

When I left him tonight, he was not being allowed to drink and may not for 24 more hours according to directions we received before the surgery.  I feel so bad for him.

October 20, 2015

I am writing this from an incredibly awesome Guesthouse Providence Hospital has built for patients like Lynn who have to come from out of town to surgery here.  It just opened in August and everything is new and shiny and beautiful.  He is upstairs sleeping as it has been a stressful day due to our unfamiliarity with this hospital.  Reading the directions they sent us I thought "easey peasey" as my office partner, Kristin, always says, but I was wrong.  We turned down the wrong street, ended up in the wrong parking garage with only about 1 inch clearance for the van, and only found a parking space with 10 minutes to go.  When we entered the building, we asked an employee if we were in the right place and found out we were completely on the other side of the complex where we were supposed to be.  We headed in the right direction but had to cut through the hospital itself to get to Oregon Clinic for the test Lynn needed.  That part actually went smoothly but the technician said Lynn does show some problems with his esophagal functioning.  What that means for the surgery I guess we will find out tomorrow.  We did find the Guesthouse easily after that so may be we got the worst that will happen out of our system right away and everything will be good from here on out.  I have told everyone the surgery is at 1:30, but I was wrong.  That is to be our arrival time at the hospital with surgery at 3:30 PM.  This is going to be a long day for Lynn as he can't eat or drink anything after midnight tonight.  Keep those prayers coming!  Nancy

February Update

As you may have noticed, what was once weekly reports have now become monthly updates.  I think this is a good sign that life DOES go on after a major upheaval and the boat stabilizes.  Here's the latest.

Friday we finally drove the van home from Brownsville.  It has been nearly a month since we first signed the sale documents.  Each step has taught us patient waiting and I will not bore you with the details.  Even at this point we must be patient.  Why?  Well, neither Lynn nor I remembered that we needed to call our insurance company so it sat here all weekend until we could call and get it on our policy on Monday.  We know that policies cover the driving of new vehicles but, in our case, there is a huge question of when we actually took ownership.  Just to be safe, then, we decided to wait.  Lynn is biting at the bit though.  In my next monthly blog, I'll let you know how driving from a wheelchair is going.  This van has a Braun lift so Lynn will be lifted up into the vehicle in his chair and will move right into the driving area, lock his chair in, and drive with the hand controls from Coachcraft.  If I drive, I move the passenger seat to the driver's side, and Lynn locks his chair into the emptied space.  Cool - huh?!!!!!  I can't believe how blessed we are to make this happen for Lynn.

Medically, I have good news and bad news.  On the positive side Lynn is taking the right amount of muscle spasm medicine right now to keep the involuntary spasms to a minimum.  This is such a relief at night as I can position his legs when he turns over so much better.  God bless Baclofen!

The bad news is that the increased medication has raised havoc with his bowel program.  We're not sure why but this has been discouraging to Lynn because he is wondering AGAIN how he can trust doing anything in the evening.   We are hoping as his body adjusts to the meds, we can get his bowels trained again.  Please pray for this.  It is a HUGE part of being paralyzed.

Lastly, Lynn has had no signs of movement. We will keep asking for God to give us a miracle.