Tuesday, January 29, 2013

Time Marches On...

Time marches on and I'm home again until Thursday.

Yesterday was Reid's birthday.  On Saturday Keith brought a cake when he arrived to stay with Reid.  It was a delicious, moist, chocolate cake from The Cake Lady Bakery.  She always has really good cakes and we all enjoyed this tasty treat.
Yesterday when Troy arrived we ordered lunch from The Olive Garden and brought it back to Candlewood.  It was a nice change from the frozen meals we zap in the microwave.  We couldn't take Reid out for lunch for his birthday, but we did the next best thing.  Why didn't I remember to take a picture???

On Friday Reid had his regular appointment and saw the stem cell doctor.  The doctor seemed really pleased with the progress Reid has made.  He told him that his brother's stem cells are reproducing and his blood work looks really good.  In fact, his platelets are back to normal which is unusual at this point.  The PET scan that was done last Tuesday showed no cancer.  So, it was good news all around.  Reid can move home on February 15th as long as there are no changes in his condition.  We are all ready for him to move home and have things sort of back to normal again!

Reid has been playing lots of games with his brothers.  It helps pass the time.

I know the room looks full.  It's going to take us a while to pack everything up when it's time to move back home.

This end of the counter holds some of the medical supplies.  We've got more stashed in the closet.  We'll be glad when it's time to pack this all away...for good!
Doesn't everyone have an IV bag on the kitchen counter?
I try and take lots of pictures of Ashley...Reid's cat.  Reid wonders if he'll remember him.  I think he will.  He might be a little skittish at first since he was feral and usually dives under the couch when someone comes in the door.  Once he realizes who it is he'll be OK.
I was hoping to have the attic duct work replaced while Reid was gone.  Jim and I made temporary repairs to one spot a couple of years ago.  Then we decided to wait until we had the house leveled before replacing the duct work so nothing would be out of kilter.  I checked with Reid's doctor and was told we shouldn't have the work done for at least six months since it will put molds in the air.  So, that will have to be put off again for a while.  I still need to have the rest of the new floors put down when we move back home.  They weren't able to finish before Reid went into the hospital.  There's just so much that needs to be done around here now.  I've been thinking about moving, but just haven't gotten past the thinking stage.  Too much going on at once!

Thanks again for your warm thoughts and prayers.

Sunday, January 13, 2013

More changes...

I'm home right now and thought I'd quickly post an update while I'm on my regular computer.  Typing things on my little Netbook at Candlewood seems to take me a lot longer, so I thought I'd take advantage of having access to my regular computer and post an update.

Reid is doing much better.  In fact, I came home for a couple of days and when I went back I could see a difference.  He's still very fatigued, but he's spending a good part of the day sitting up.  His appetite has also improved.  It's far from being back to normal, but he usually eats at least one half way decent meal a day.  And the shortness of breath is practically gone.  He coughs a lot less now.  I'm a little paranoid about all the flu this year, but he's not out in public and wears a mask when he goes to the hospital.  We've all had flu shots so hopefully no one will get sick.  I keep the hand sanitizer people in business!

Reid's got a ziplock bag full of medication.  I told him it reminded me of my father but about half of it is just medication he takes as needed.  Daily he takes the anti-rejection medication, anti-fungal, anti-viral, and probably one or two other things that I can't remember right now.  It's the anti-rejection medication that requires a daily three hour infusion to flush his kidneys.  We were going daily to the hospital, but they decided the infusion could now be done outside the hospital.  His blood work has stabilized and he will now only go two days a week to the hospital for a blood draw.  While he's there they'll give him the infusion.  He'll also see the stem cell doctor once a week during the infusion.
Meanwhile, we were given a pump and instructed on how to hook him up for the daily infusion.  I don't mind telling you that I find it a little nerve wracking, but hopefully in time it's won't be as difficult.  The nurses at the hospital all make it look so easy, but I feel like I'm all thumbs.  I'll be going back to Candlewood in a little while, but Keith will be starting the infusion this morning.  We're all doing it now, but Reid also knows how it's done and can prompt us when we have trouble.  We've got printed instructions to follow too.

I'll be staying tonight and then Troy will be arriving Monday morning to relieve me until Wednesday.  Meanwhile, Keith will be staying at the house taking care of the menagerie and returning to Candlewood to relieve me on Saturday.  Did you follow all of that?  Anyway, we do have everything covered so that Reid has someone with him 24/7 as required.

I was able to extend our stay at Candlewood until February 15th which is only five days short of the 60 days post transplant we're supposed to live down there.  The Houston Rodeo is cutting our stay short those five days, but I'm hoping the doctor will say it's OK to move back home at that time.

Thanks again for your support and prayers.

Monday, January 07, 2013

A little excitement...

Early Sunday morning (4 AM) Reid started coughing and couldn't catch his breath.  It went on for about ten minutes.  He told me he was dizzy and couldn't breath.  He could barely talk.  Finally, I asked if I should call 911 and he said yes.

The ambulance arrived in less than five minutes, but by then he was breathing much better.  They put him on oxygen and brought him to the ER. I got dressed and followed a few minutes later.  Fortunately, there aren't many cars on the road then and of course, I made a wrong turn and got lost.  However, I found my way and arrived at the hospital a short time later.

They decided once again that he does not need oxygen at home.  The saturation rate is good.  He only has trouble when he has a coughing fit.  So, after six hours in the ER we left so he could keep his appointment upstairs for the three hour infusion that he needs each day.  He is very fatigued, but he was after the last stem cell transplant too.  It takes a long time for the energy level to get back up again.  I've been using the valet parking at the hospital so that I can get him right in a wheelchair.  He can walk, but everything is pretty spread out at the hospital and he can't do that much walking.  So, we grab a wheelchair at the front door.

Last night went very well.  He didn't have a coughing fit, but he's learned to walk slowly and not jump up fast.  It's when he takes deep breaths that he starts coughing.  I think he also panics a little when he can't catch his breath which causes him to breathe faster and just makes things worse.

Today Troy came to stay with him and I came home.  I will go back down on Thursday and stay until Troy returns on Monday.  And Keith arrives tomorrow.  So, I have reinforcements now!  That is a big relief.  I hadn't been able to leave Reid to go to the grocery store.  Candlewood has a small pantry and I was able to buy a few things there, but before I left for home I went grocery shopping so Reid and Troy would have plenty to eat.  The little kitchenette only has a microwave and a two burner stove top, but it's sufficient and I loaded up on TV dinners and assorted junk food that I thought might appeal to Reid. He is able to eat now and hold things down, but he doesn't have a big appetite.

We were teasing Troy about this being his big test.  When Reid was little we went out one day and left him with Keith and Troy.  They were in high school at the time and got busy playing a video game.  Reid had gone roller skating with a friend, but fell and broke his arm.  He told us later that he heard it break.  Anyway, he came home and told his brothers that he had broken his arm.  It was a clean break and not visible, and they didn't believe him.  In fact, they told him to quit crying and to leave them alone.  So, he got some ice from the freezer and put it on his arm.  When we arrived home he told us that he had broken his arm and "Keith and Troy don't even care."  It's one of those family stories that we like to retell from time to time.  Reid and I are confident that Troy will do a much better job this time.

I better get back to vacuuming.  I'm trying to get the house in order before Keith arrives tomorrow.  I wasn't getting much done at all in the evenings when I got home from the hospital and the place is a mess.  I'm also looking forward to sleeping in my own bed.  If the cats allow I'll sleep a little later.

Saturday, January 05, 2013

Lots Going On...

Reid's white count continued to go up and took a big jump overnight on Tuesday.  The doctor said he could be discharged on Friday.  This welcomed news took us all by surprise.  Keith wasn't returning from Austin to help me out until the 9th.  I couldn't make hotel reservations until I had an actual date and I thought there would be more notice.

Just my luck the hotel across the street had no rooms available.  I think a lot of people put off traveling to MD Anderson until after the holidays and made reservations to come after the first of the year.  I really wanted to stay close to the hospital this time, but had no choice but to quickly come up with a plan B.  I was very pleased with the place we stayed at last time, but it's a little bit farther away.  I called them anyway and was able to get in for at least 30 days.  The Houston Rodeo starts the beginning of February so we might have to leave then.  I'll cross that bridge when I come to it.  The doctor had said he'd need to be close by for 60 days after transplant, but I'm kind of hoping that might change and we can go home sooner.

Reid was pleased to be getting discharged and then on Thursday had a nose bleed that wouldn't quit.  That's not unusual with low platelets and it finally had to be cauterized.  Then he continued to have shortness of breath and was seen by a pulmonary doctor to see if he'd need oxygen at discharge.  Of course, this now had the Friday discharge date a little up in the air.  However, on Friday they finally determined that he wouldn't require oxygen outside the hospital and said he could go.  We left the hospital around 6:00 PM.  He still has trouble catching his breath when he coughs, but his lungs have developed some scar tissue from all the radiation he had a few years ago. 

He now has to return to the hospital every day for blood work and infusions for at least the next two weeks.  This all takes around five hours, but he's still glad just to be out of that hospital room he called home for three weeks.  He's lost weight and is very fatigued, but is starting to eat a little now.

Troy has offered to come to Candlewood and stay with Reid from Monday through Thursday so I can have a little break.  He's able to work remotely with his laptop and take Reid over to the hospital each day.  I also think Reid will enjoy having someone else around.  Troy got sick and had to stay away from the hospital after the first week and Keith had to return to Austin on the 30th, so it's just been me lately.  I have some things I need to get done at home too. By the time I returned home from the hospital in the evenings I was kind of worn out and not much got done.  Keith is coming back on Tuesday, so I'll have even more help and will finally be getting a little rest.

I'll try and post updates as time allows.  Thank you for your support and prayers.  Betty