Little by Little....

The 40 day thing.

If you read Ray's post today, you learned that he has now been in the hospital 40 days and 40 nights. He said it's hard to believe it has been that long. I say has it only been 40 days?

I've been here at the hospital for a portion of each of those 40 days. Most of the days I've traveled from home to be here--an hour and a half round trip. Some of the days I have come here from my work in Provo, making close to a three hour driving trip those days. A couple of times I've made two trips to the hospital in one day. I estimate that I've spent over 72 hours in my car (the equivalent of three complete days.) I'm sorry to say that I don't have much to show for those 72 hours like listening to 30 books or finishing the New Testament reading, etc. But I do have a car that is filled with two overnight bags, juice bottles, water bottles, an extra coat, two pair of shoes, a change of clothing, Ray's dirty laundry, a See's Candy box, gas receipts, and, of course, garbage. I sometimes feel like I'm living out of my car like some homeless person. I guess I'll call my Explorer my home away from home.

Seriously though, Ray has been great. On his visit today, the PA remarked how amazingly patient Ray has been through all of this. He's right.

He's Back

For the past week, Ray has been acting more and more like his old self. He seems to have more energy and no longer seems continually exhausted. His sense of humor is back in full force and he has fun joking with the nurses. He's also teaching occasional grammar lessons when needed to the staff (sound familiar?)

He has a mini office set up in his room with two bedside tables in the corner to hold his computer and printer, and a chair. There's also an exercise bike and another chair for watching TV or visitors in another corner. There's a recliner in the other corner and the hospital bed is in the center. He putters around during the day, working on the computer for a while, then goes for a walk, watches TV, or rides a bike. He's becoming an exercise fanatic riding the bike for 40 min yesterday while watching a DVD. Sweet.

It's soooo good to see him looking and acting better.

Transplant Updates

He continues on high doses of steroids for his GVHD and he seems to be tolerating them pretty well. He just finished his second meal that actually had some solids in it. He had Rice Crispies for lunch and rice for dinner. For someone who was allowed ice chips only to wet his mouth for over 9 days, this is a huge improvement. His system seems to be tolerating the new diet well so tomorrow they may let him add some protein. Yum.

He still is getting complete nutrition through his IV as well as several other meds. They say if he progresses his diet to eat enough to sustain himself without any setbacks, he'll probably go home by the end of the week.

So we're progressing. The main thing is that there is, indeed, progression. The blood counts continue to be good. The new bone marrow cells are doing what they're programed to do. So we'll continue on our road to healing, little by little.

Hello Again

Number 1 Blogger Back on Board

So you've probably seen that Ray has surfaced enough to blog again. Yea! Since I have been way overwhelmed this week with inside-of and outside-of hospital duties, I was glad to see he was able to post and keep everyone updated.

I worked a couple of days this week, attended some work related meetings, arranged to meet with doctors and nurses as they discussed and made major changes to Ray's treatment, tried to be available for Ray during his diagnostic procedures, as well as doing my usual care-giving duty: seeing to the comfort and care of my #1 patient. By the end of the week I felt pretty exhausted and overwhelmed.

Last night as I got ready to leave, Ray asked, "Are you going to stay up here?" Skipping a 50 minute drive home alone in the dark sounded so good that I drove down the hill and was checked into the Marriott in less than 10 minutes. I felt like I was in heaven. The beds were so comfortable and it was dark, warm, and quite. I slept so long that I missed the hospital Sacrament Meeting this morning. I also got a late check-out so I could return to take a Sunday early afternoon nap. A little extra sleep and a touch of spoiling can go a long way. Guess I better not get used to it.

The Jury Is In

Well, as you have probably figured out or read by now, they have diagnosed Ray with graft verses host disease.

The good news is 1) They are calling it mild--grade I or II. 2) The steroids seem to be helping with the symptoms. 3) They feel they caught it early so the treatment seems to be working. 4) He's feeling a lot better!

The not so good news 1) He has to take large amounts of medications with some possible scary side effects. 2) The length of time that he has to take the anti-rejection drugs with their not-so-fun side effects has just doubled. 3) The overall recovery time will be increased.

I didn't take this diagnosis lying down. I guess this might have been one time that I wished I didn't know so much. I was a little feisty, making them hold off treatment until they explained completely why they had come to their conclusion. I actually told Ray to refuse treatment until we had a chance to sit down and talk things over with the doctor. I think I might have caused a little stir among the care-giving personnel. But I knew this change in treatment could have major effects on Ray and quality of life. So I wanted them to be sure. It wasn't until today when I had a chance to talk with Dr. Peterson, the medical director of the BMT program, that I was finally able to feel a little more comfortable about the direction of treatment.

Transplant Updates

It has now been an entire week since Ray has had anything other than ice chips to eat or drink. It's been over two weeks since he's had a meal of any substance. He says he really doesn't feel hungry but today food is starting to sound good to him. It's strange to think he hasn't eaten anything for that long and amazing to think that they have figured out how to nourish his body through the blood stream.

He was officially taken off isolation for Influenza A yesterday. What a difference to see the entire face of the staff here instead of just their eyes, ears, and hair--the only parts that were visible with a mask on. We got to change rooms to a positive pressure room which is closer to things. I lost my private bathroom though. But Ray gets to take walks in the halls now. And he is the one putting on the yellow gown, mask and gloves instead of the care-givers.

Ray looks and seems to feel a lot better. He is quite weak but his spirits are up (as you can tell from his blog.) He was a lot more patient with the events of this week than I was. I guess that's why it's good to have two in a marriage--one can be sane when the other one isn't.

Our love goes out to all of you as you participate in our journey. May you receive the blessings you need and deserve.

Now You Have It....Now You Don't

Another Waiting Game

Well, I'm not sure what to say--Ray would comment, "That's a first!" They have finally decided to do a scope to see if they can get a definitive answer on whether his multiple, evasive symptoms are caused by GVHD (graft-verses-host-disease.) Sometimes just looking at the gut will give them enough information. If not, then they do a biopsy.

We're not exactly sure when the scope will take place because it even though it was decided today it was time to scope, they will have to wait to contact the gastroenterologist sometime tomorrow and see when he can work it into his schedule--that could be morning, noon, or evening.

Meanwhile they have taken Ray off all food and water. This is for a couple of reasons. 1) So he'll have nothing on his stomach when they give him the anesthesia tomorrow and 2) If it is GVHD they don't let him eat or drink anything to completely rest the gut.

So we wait to find out when the scope will be and we wait to find out the results from the scope.

Graft Verses Host Disease

GVHD is where the donor (graft) cells start attacking the receiver (host) cells. It's called acute if it occurs in the first 100 days after transplant. It can be said that it is an unwanted complication. Symptoms include diarrhea, skin rashes and unusual pigmentation, red skin, fever, dry eyes and mouth. Since Ray has had some of these symptoms since he was first admitted, it's hard to determine for sure if it truly is GVHD. They say the scope is the best way to tell what's going on so we're having a scope.

They treat GVHD with high doses of steroids and keep the patient without anything to eat or drink for a week or two to repair the gut. Then they back off on the steroids and slowly introduce water, liquids, and then solids back into the diet.

The Ups and Downs

Last night was the first night since Jan 28th that Ray was alone during the night. It was good to have him well enough to be able to leave alone for a few hours. It's now become hard to leave him alone after spending so much time together.

As you've seen from Ray's recent blog, the new stem cells are producing nicely. His white blood cells are within normal limits. The PA came in last Thurs saying he could probably go home Sunday (today) because his counts were great. I was shocked. After how sick he had been they actually were thinking about sending him home.

We were exhausted from the hospital so our home was no where near ready for Ray to come home to. I panicked a little the next day when they brought the discharge planner in to start setting things up. But when he got another fever Fri, they said said he bought himself a little more time in the hospital.

Now they're talking about possible GVHD and an additional 2-3 weeks in the hospital, I wouldn't mind going back to the Sunday discharge. Oh well. We'll just stay on the ride and hang on.

What a Difference a Day Makes

Intense vs INTENSE

I would have to say that the last 9 days were some of the most intense I've ever experience. I'm not quite sure why, but I've decided to share a few of the things that have been going on here. Maybe it's to prove to myself that it, in fact, was INTENSE.

The nausea has been Ray's constant companion. He's recieved up to 4 different nausea medications several times in a day.

He’s still receiving his nutrition through the IV. The nausea eased up a bit a couple days ago, but he has no desire to eat yet. He started eating a little Tuesday (500 calories) and had about the same today. He’ll still be on the TPN until he eats his normal calorie intake two days in a row.

He’s had a 104.6 fever two different times so we’ve had to cover him with ice packs until they came down. I changed the ice packs all night long one night and my daughter did the same thing another night that she was here. His fevers were over 101 for 5 days in a row. He had the chills so bad at times that his whole body would just shake uncontrollably.

One of the most annoying things throughout this recovery time has been a cough. They're not sure if it is flu related or from transplant or fluid retention. But whatever the cause, he has several coughing spell during the day and night which have interrupted sleep and worsened the headaches and nausea.

He developed an irregular heartbeat and has been on constant monitoring (telemetry) the last four days to make sure all is OK there.

For the last 8 days my children and I have been taking turns to make sure that someone was here with Ray at all times. I have not included everything that has happened this last while, but I'm sure I've probably written more than enough for whoever reads this.

Is this the Same Guy?

Last night (Wed 2-2-11) my son, Chad, stayed with his dad so I could go home after a 36 hour stent and sleep in my own bed. Ray had been asleep most of the day Wednesday because of another rough night.

I returned today to find a goodlooking man, sitting up in his bed, smiling and visiting with my son. He had just finished some Cheerios and orange juice and was talking about taking a shower. He had already seen the PA and told me that she had said that his counts were great and that they needed to start getting him ready for his discharge in the next few days. Was I in the right room? Was this the same person that I had been with the day before?

The lab results were wonderful. WBCs were 4.2 today and ANC was 3.2. That's higher than they've been since this all started a year ago. The Hct went up to 31.3 and platelets were 145. So those new stem cells (now bone marrow cells) are working hard. Yippee.

Progress

Today was day 15. They said BMT patients usually feel better about day 15. They were right. The cardiologist came in today and said he thought Ray's heart was fine so they discontinued his monitoring. They've started giving him more of his medications in pill form, so his infusions have been cut way down. The desire to eat comes and goes along with occasional nausea, but that is a big improvement from two days ago. The cough is still a problem but seems to be de-intensifying.

I don't think his discharge from the hospital will be in the next few days. But it will come soon. There is a little light at the end of the tunnel.