Dominoes (long long post)

I've never played dominoes, but I enjoy seeing those intricate designs where knocking one over results in others falling one after another. 
We've been living a domino experience lately.
Last fall we purchased a different power chair with a reclining back, thinking that it would help Neal be more comfortable especially while we were spending long days as missionaries at LDS Employment.  The chair was slightly smaller, a little streamlined and seemed like a good idea.  Unfortunately the seat was like the seats on computer chairs and was too hard.  As a result Neal developed a pressure sore which by October was at stage 4 - bone exposed.  He became a patient at the wound center, again, and our lives suddenly revolved around medical appointments.  At the same time his heart function slowed down, he had difficulty breathing, and by Thanksgiving he had pneumonia.  One night he developed scary abdominal muscle spasms that wouldn't quit so the EMT's took him to the ER.  He was admitted and spent 9 days in the hospital while they chased infections.  Finally he came home to a regimen of 23 hours a day in bed to stay off the wound and maybe get it healed.  He still had difficulty breathing and went back to the hospital on December 31st but came home the next day with oxygen for home use.  in January he had a bone biopsy which showed infection IN the bone, so he was readmitted to the hospital for IV antibiotics.  They inserted a picc line in his right arm and transferred him to a nursing facility in Des Moines.  (Night and day difference in quality of care from the previous facilities he'd used!)  He was there for two weeks, but was miserable - no internet access, no cable TV, and frustrated about other details.  We had a case conference with staff and learned that we DID have the option of bringing him home for daily IV antibiotics and home nurses to help with wound care and Medicare would pay for it. 
There were so many things I learned from that facility - especially about nutrition but also about resources in South King County.  I really appreciate what we gained from them.  I brought Neal home and we fired the doctor who had insisted Neal could only be treated in a nursing home.
Neal's cardiologist recommended a different infectious disease doctor to treat the bone infection, and we have been very pleased with the help Dr D has given us.  Her office even purchased a different exam table for wheelchair patients - and Neal was her only patient who needed it!
The picc line in his right arm shifted a bit or something and developed a fistula, resulting in Neal being unable to use his right arm.  As a paraplegic, both arms are vital for transfers from bed to wheelchair so this was a big deal.  Back to Dr D, then to the hospital where a new picc line was inserted in his left arm and the old line was removed.  The pain immediately went away but it has taken several months to regain most of the use of his wrist.  We hope that will continue to improve.
Meanwhile Neal's heart was getting worse.  He needed an aortic valve replacement but they were reluctant to proceed with that surgery while there was an open wound.  So we consulted with Dr G, the only surgeon in Seattle who does skin graft surgery.  He looked at the wound, took a bone sample and told us that he would not consider doing surgery until Neal had his heart repaired.   
Back to the cardiologist who sent us to a famous cardio surgeon.  I think the two of them saw Neal as an interesting case.  Dr B met with us and then ordered a series of tests in preparation for the valve replacement.  One of the tests was delayed enough that they kept him overnight.  (Are you keeping track of hospital visits?) The final test before the surgery resulted in a phone call from the cardiologist's office: "Please come to the office tomorrow." 
Not good news.
Neal had developed blood clots, in his lung and in his legs, some chronic and some critical.  So he was started on coumadin but a week into that treatment, he developed coagulopathy and had a nosebleed that lasted over 8 hours.  One more trip to the ER, treatment for the bleeding, consult with another specialist, adjust the dosage of coumadin, more blood tests, etc.
Because of the blood clots, Dr B dismissed Neal as a surgical candidate and we were devastated.  Back to the cardiologist to see if there was ANYTHING that could be done or if Neal would just continue to get weaker.  (His heart by this time was functioning at 17% of normal.)  The cardiologist said there was one other thing they could try and called it Neal's "only option."  Basically it was a rotor rooter process, but done between heartbeats.  Dr L said that it might help.  I was terrified.  The procedure (aortic balloon valvuloplasty) was fairly successful and Neal began to get stronger.  In fact he left the hospital the next day.  We don't know any official numbers but the cardiologist has estimated that Neal's heart function now is somewhere between 25 and 30%. 
Over the summer Neal spent time with his grandson, worked on some projects in the yard, and seemed to be getting stronger.  He even went fishing a couple of times. 
However the wound just didn't want to heal.  Finally MP at the wound clinic said that she thought Neal would have it the rest of his life if he didn't have surgery.  We weren't very interested in another surgery because the last wound surgery (by the same surgeon) took 2 1/2 years to close AFTER the surgery.  But we made it a matter of prayer and felt like we should at least talk to him.  Dr G called and talked to Neal, explained the differences between the two wounds and why he felt this would be successful.  We went to the pre-surgery exam and had confirmation that we were doing the right thing - each of us felt like it was the right thing to do.
Dr C, director of the wound center, surgeon Dr G, Neal and I all agreed that recovery would be at home instead of in a skilled nursing facility.  We knew that he'd receive more attention, more careful treatment, better nutrition, and be more content (thus healing faster) if he were home.  So after the surgery and three nights in the hospital, an ambulance brought Neal home.  He cannot bend his hip for at least 3 weeks, so bringing him home in the wheelchair was not an option.  We have a pharmacy mixing the IV's and shipping them to us, plus home nurses who monitor the healing and change the dressings on this picc line.  I'm delighted to have the same professionals this time as last spring but we are counting the days until the stitches and staples come out and Neal can sit up again.  A PT comes to the house once a week to work with Neal to keep his upper body strength so he can safely do wheelchair transfers after 3 to 6 weeks in bed.
Me?  I'm okay.  I still have problems with my foot but have figured out how to cope with it - changing shoes often and not going barefoot both help.
So that's our life in Renton as of now.  I'd love to take a break to see the chiropractor (all this nursing is tough on my back), but the best day to see him is Thursday and today we had a home nurse here - maybe another time.
What's next?  Once Neal recovers I'm planning a trip to North Dakota to be with my daughter when the baby is born.  After that we'll pursue what we hope will be the last domino - aortic valve replacement surgery.  If all goes as planned, that will be in the spring and they'll renew Neal's warranty for another 100,000 miles.