Waiting to Turn the Corner

Finally.

After all these months of saying I would write a little something every few days, I've finally accomplished that goal. It's only been 3 days since my last post. I'm quite proud of myself even if it took me almost a year to accomplish the goal. I can't promise that it will happen again, so we'll have to just enjoy the moment.

Same old same old.

Truthfully, it seems like we've been doing the same thing for the last several weeks. He has some good days and some bad. On good days Ray gets up and walks 2-3 times, spends 2-3 hours in the chair, drinks a little, takes a bite or two of things and participates in a conversation or two. On bad days he refuses to get up and walk, has nausea and usually throws up his oral medications, sleeps most of the time, refuses anything to eat or drink, and pill-taking is a chore.

He has a little problem with confusion at times and on bad days it can be a challenge.

They're still giving him the same medications. He's getting three major anti-fungal IV meds, three major IV anti-biotics, and IV anti-fungals, as well as potassium, magnesium, IgG, tacrolimus (an anti-rejection drug), and other odds and ends drugs through the IV. They have stopped the steroids to help give the white blood cells a chance to help the lungs recover.

His condition seems to be somewhat in limbo at present. As the Dr. put it, we’re waiting for him to turn a corner. We’re waiting for his chest x-ray, nausea, appetite, or confusion to improve so we can know that he is on his way back. Unfortunately they say that in their experience, the longer it takes to turn the corner, the less likely it is for it to happen. But Ray hasn’t given up yet and neither have we. The doctors still say there’s nothing he can’t overcome, but they are concerned there is so much to for him to overcome. We’ve decided to just leave it in Heavenly Father’s hands because it’s all up to Him anyway.

So Meanwhile…

We’re camped out here at LDS Hospital in East 851. I have a window sill filled with fruit and snacks, a laptop computer, and a new tablet with all the movies, books, music, and pictures I need. I have my best friend beside me, and the love and concern of countless neighbors, friends, family and caregivers. I feel surrounded by the love and support of so many. I know we’re not alone on this journey.

May you all feel the love and warmth of those around you as we do. Good night all.

My How Time Flies

I was planning on updating this every couple of days so once again I was surprised to see over a week had past since my last post.

Tonight will be just a short update because it's already 8:30 p.m. I've been to work today already so I'm a little tired.

Ray seems to have really good days where he walks like crazy, sits up in a chair for several hours, and talks up a storm. Then he has days where he sleeps all day and is quite confused when stirred. One of the nurses said it seems like Ray has two speeds: fast forward and stop. I tend to agree.

We're still waiting for final cultures from the lungs. They did find a type of mold in one of the cultures. Crazy huh. They did say that the medications he's currently recieving will cover the mold. I think we all need to be grateful for our immune systems.

Our children, Chad, Wendy,and Adam, are becoming more frequent visitors which is a treat for Ray and me. We love our family. Our children make us proud.

Best wishes to all of you!

Oops

Hello Everyone!

As you may have noticed, there was no narrative included with my last post. I guess I decided to leave it to you to fill in the details. Actually, the truth is that I wrote for an hour and a half on that post but the hospital internet went down and when it came back up the post had disappeared. I didn’t get any sympathy from my younger son even when I explained that I had hit the save draft button several times while typing. So I will write this in my word processer and copy and paste.

The World’s Best Caregivers

As of this coming Saturday, November 6, Ray will have been in a hospital setting for 13 consecutive weeks. In the last 14 months Ray has spent 25 weeks in the hospital. The majority of those weeks (21 weeks) have been on East 8 in the LDS Hospital.

The staff on East 8 have become our second family as you can well imagine after spending so much time here. Last week, when Ray returned from a CT scan, he remarked, “Everyone knows me here. They were all calling my name and waving at me. It took me forever to get back to my room.”

I guess I realized how involved the staff are with his care when one of his caregivers, during his last transfer, said, “Oh is he leaving? I will really miss him.” And I could tell she meant it.

Downs and Ups

Last week was a little rough. Ray continues to refuse to eat more than a bite or two of meals Sometimes he says it doesn’t taste good. Other times he complains of stomach pain. So they scoped his stomach on Tuesday to see if they could find any answers. The biopsies showed some GVHD stage 1-2 of a possible 4. But we are just going to monitor for a while since treatment involves more steroids.

The CT scans of his lungs showed some nodules that were getting bigger so they did a scope of his lungs on Friday. They added an extra anti-biotic to his medication regime a couple of days ago but the pulmonologist said it would take at least 7days and possibly 14 days before they would be able to see any fungal growth. The main reason for the cultures is to make sure the medications they are using are the best medications to treat the germs in the lungs.

He had a pretty rough weekend which I think was mostly due to the culmination of the anesthetics used for the scopes—he’s never handled anesthesia very well. He had a cough from the scope and was extremely nauseated. But he did manage to enjoy a visit from his sister, Candy, and his brother, Von, who came up from Arizona to see him.

He seemed to be doing better Sunday night so I went to work on Monday. But during the day Monday, the BMT Dr. called me at work and said that the chest x-ray showed fluid in the sack around his lungs (pleural effusion). So they were going to do an ultra-sound on his lungs and then try to drain the fluid from the sacks. I headed up to the hospital after work only to find him sitting at the side of the bed involved in a lively conversation with his sister and our neighbor. Since he wasn’t in any pain or having difficulty breathing, I knew the effusion couldn’t be very bad.

A Little Improvement Goes A Long Way

The last couple of days he has been doing a lot better. He engages in conversations and seems physically stronger. He’s been walking farther each day and sits in the chair or at the side of the bed several times during the day. This is quite a change from the previous week when he was so exhausted that he wasn’t getting out of bed at all and could only say one word when someone would ask a question.

I’ve enjoyed having conversations with him the last few days. Sometimes he gets some of the facts mixed up but he’s telling jokes and using familiar phrases.

Time To Say Goodnight

It’s now 12:30 a.m. I guess I’d better wrap things up and head to the hotel to bed. I’ve been staying up in the big city (Salt Lake) since Monday. I ran home this afternoon to get some things and when I arrived at the hospital tonight , Ray had a shiner. I guess he had a fight with the bathroom floor and it looked like the floor won. They had him back in bed with Band-Aids all over the left side of his face. I added some ice to the growing black eye and he’s been asleep ever since. I imagine he’ll be pretty sore in the morning. Poor thing.

We’ve been grateful for visits and calls from family and friends. I know that Ray has been the beneficiary of your many prayers. Please forgive us for not keeping as close of contact as we/you would like. It’s been difficult for Ray to answer calls and emails because his energy has been so low. Just know that we love and appreciate all your love and concern for us and you are in our thoughts and prayers as well. Love to all.