the long road

by nemerson

Yep, still Jill here typing… 

Before I get into all the details of our challenging days, I want to give you all a link where you can sign up to bring us a meal:  http://www.takethemameal.com/meals.php?t=UNKW2839  Caring for Nate has become increasingly difficult the last couple of weeks, and I really appreciate not having to prepare a meal each night.  Thank you!

At the time of my last post 5 weeks ago, Nate was making good progress and gaining strength each day.  He continued to do so for about a week, but then seemed to be getting worse and continues to decline.  The vision loss has been a HUGE problem and has gotten much worse.  We returned to the optometrist and then ophthalmologist to see if Nate could get some new glasses to help with the problem.  What we found was shocking…he could not even read the largest letter on the wall!  Legally blind is 20/200, and Nate’s diagnosis was 20/400.  The ophthalmologist said Nate’s eyes were working perfectly, so there must be a problem with the way his brain was interpreting the information it was receiving.

Next stop was to the neurologist.  We had several MRI and CT reports of the brain from Nate’s time in the hospital in Boston.  The neurologist’s first question was, “Has your blood pressure been high?”  Strangely, yes it had.  I had noticed that trend and reported it to Nate’s oncologist, but he was not concerned.  The neurologist believes that Nate has PRES—posterior reversible encephalopathy syndrome—which is basically swelling in the brain due to high blood pressure.  To bring the blood pressure down, the neurologist chose to increase the dose of Lopressor that Nate was already taking to lower his heart rate.  It’s been 2 weeks now, and we’ve been steadily increasing the dose to try to keep Nate’s blood pressure in the normal range but with little success.  Sadly, his vision has gotten even worse, and he’s often disoriented and confused. 

On Sunday, Oct. 28, he had some weakness and uncoordinated movements in his right side which got worse throughout the day.  I was concerned that he might have had a stroke during the night or something like that, and my nurse friends all agreed that I should take him to the York Hospital ER, where he as admitted.  They did a CT scan and later an MRI which showed increased swelling in the brain causing the right side problems.  Not a stroke, but not exactly good news either.  The docs at York say the only treatment is to bring down the blood pressure.  They’ve changed his meds, added new ones, increased others, but with little success.

On Wednesday, Nate had to have his feeding tube replaced yet again because it was clogged.  The nurse skipped his steroids that morning because of the procedure, AND they had accidentally been skipped the night before when the doctor wrote for a dose change.  Because of his adrenal insufficiency, poor Nate was practically comatose by noon on Wednesday when his nurse brought in the missed morning dose.  I almost fell out of my chair when I realized what had happened with the missed doses of steroids!  His body was in adrenal crisis—total shutdown mode.  What a horrible day it was, but the steroids did the trick and he was back to “normal” by around 4pm. 

Unfortunately, the feeding tube started leaking, and a culture showed that there’s still pseudomonas bacteria in there.  The GI doc came in the next morning and tightened up the tube so it would stop leaking, and we ongoing antibiotics to take care of the lingering infection.  Yes, it’s the same one from when he was in Boston…it seems his body just can’t fight it on its own but requires continual antibiotics.  He also got the sinus infection back just a few days after stopping the antibiotics he was taking at home.  I guess Cipro will be our new best friend. 

We brought Nate home from the hospital this past Sunday, Nov. 4.  He was not any better (even worse on the right side), but the doctors/nurses weren’t doing anything at the hospital that we couldn’t do at home.  Having him home is quite challenging.  His entire right side is almost useless.  He can stand only with assistance.  He has to be fed most of his meals.  He can’t go to the bathroom by himself (the ultimate humiliation for him!).  Nate’s parents have come back to Maine to help me out, and my parents are helping out.  Church friends have been coming to my rescue a lot lately, too.  J  We have a great support system, and I believe that we can make things work for him at home for the time that he has left.  God is giving us the strength we need for each day and hope for the future—different as it may be.  Nate is not in any pain, and we’re so thankful for that.  We’re still pursuing a second and maybe third opinion on the brain swelling solution, but it’s difficult to get Nate in and out of the house and car.  Please pray for wisdom for us and the doctors.

We will probably need a wheelchair ramp built or a wheelchair lift for Nate to get in and out of the house.  Please let me know if you’re willing to work on that project or know of anyone who might have a wheelchair lift to sell or lend.

Thanks for your continued prayers and support.  My biggest prayer request right now is that Grace and I would love Jesus more each day and know his love for us and not become bitter.  We’re doing OK so far, by God’s grace. 

^“To him who is able to keep you from stumbling and to present you before his glorious presence without fault and with great joy—to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen.”  Jude 1:24-25

Don’t forget to sign up to bring us a meal:  http://www.takethemameal.com/meals.php?t=UNKW2839  and feel free to share it with friends.  We look forward to seeing you as you drop off meals at the house!