Day 90.

Dr. B. was on rounds again today.  He came in smiling and it seemed like everything was ok.  Boone's white count is over 5 (in the low normal range) his neutrophil count is over 3, which is fantastic.  Still low on platelets and a bit anemic, but it's those infection fighters we are thrilled to see going upward.

Dr. B. didn't spend much time in the room, gave me a long glance that made me feel like things were moving in the right direction.

When he went out the LPN came over to listen to Boone's chest.  He asked her something I couldn't make out, and her response was "You are not responding as well as we would like..."  sent Boone into a tail spin.  Say what?  I thought that was the last protocol, the end of the line.  Sent me spinning too.  I could have choked her.  Then I found out that  Boone is reading my posts...Ummm shouldn't have posted about my talk with Dr. B. in the hall.  Just shouldn't have done it.  Boone said he knew anyway.

This evening the pathology report on the bacteria in his lungs came back.  Boone was confused and told me it was E Boli, to which my response would be to run like hell, if I hadn't already heard from his nurse that it is E Coli.  Not good, but at least it's not E Boli.  I guess things could be worse.  We'd have the CDC on us like ducks on a June bug.

But I guess there are always other drugs, and at least E Coli is common enough everyone knows what to do about it.

Nurse L got Boone up and walked him today with the PT lady.  I could have helped, but I opted for a nap instead.  Its extremely tiring and stressful to be trying to move, take care of two houses and critters, and be at the hospital as much as possible; not to mention facing the unknown everyday.

The popsicle was orange today.  He was hoping for two, but no, only one per day.

Day 90 for us.  Day 1 for Jeri and Jan's brother.

Ladies, how's he doing?  I'm curious also about prior trips to the ICU.  Hope all is well in Alabama.

Day 88:

Bad days just start out bad and get worse.  At about 6:30 AM,  Boone's ostomy bag burst.  It having the same consistency of water, went everywhere.  Linens had to be ripped off the bed and the plastic bed liner washed.  Boone had to be put in the shower.  I scrubbed him from head to toe, dried him off and got clean clothes on him.  Others were cleaning the floor, the rails, everything in range.

Today it was Dr. B. making rounds. The one I called an ass sometime back.  I've grown to appreciate him.  He is obviously brilliant and I guess they told him I called him an ass because he is very nice and attentive to me now.

Anyway Dr. B. came in and informed Boone that it is definately Graft vs Host Disease (GVHD) in his gut and in his lungs.  They are still culturing the gram negative bacteria they found in his lungs.

I had just been reading about GVHD and asked Dr. B. what grade it was.  His head whipped around, with that -you know about the grades???  He hesitated a second and said grade 3, then I guess he figured if I knew about the grades, I might know better.  Then he said grade IV.  From what I had read, that was my opinion.  Grade IV GVHD is bad, really bad, and to have it in two areas is almost always fatal.

Dr. B. told us exactly what I had read, that there are 3 protocols for GVHD.  The first is steroids, the second some unpronounceable drugs, and the third, another form of chemo.  Boone had already had the first two protocols.  If the third one doesn't work, then it's likely he would not survive.

Boone had lost six pounds from the fluid his guts were pumping out.  Even with IVs going 24 hours a day of saline and food and liquid drugs, output was much greater than input.  Classic GVHD.

Boone was begging for anything to eat or drink.  He's still NPO.  Anything swallowed will just inflame his gut and worsen the situation.  He's allowed to chew ice, but has to spit out the water.  He was very grateful to be trusted to spit.

After Dr. B. left the room, I chased him down the hall.

"OK, y'all always want to know a happy face number, so tell me, where on your happy face scale is Boone?"  Dr. B. got a very puzzled look on his face, and said "A frown."

"No, I mean is he a 6 or a 7?"   Dr. B. looked me straight in the eyes, hesitated, and said "No, he's an 8 or a 9."  Dr. B. squeezed my upper arm and gave me the I'm very sorry look.  I was stunned.  I guess I knew it had to be bad, but the docs always soft peddle everything.  He said we will know in a week or two how it will turn out.

I started notifying relatives and friends that Boone had taken a turn for the worse.   That night they put him on protocol number three.  A giant bag of stuff wrapped in a chemo protective bag.

Day 89.

Dr. B. was again on patrol.  When he walked in the room he was smiling.  It appears protocol three has helped.  Boone's O2 levels have risen, even with the gas flow being turned down from a 6 to a 3.  He's now holding his O2 in the high 90s.  His white count jumped to 3.1 his neutrophil count is over 1000.

His reward?

One grape Popsicle per day.  So sayeth Dr. B., so let it be done.

Thank you Dr. B.

Boone is very grateful..

Once again, we send out all our love and well wishes to Jeri and Jan's brother.  Hope the transplant goes well.

Brother, Get up and out of bed as soon as you can.  please.

Keep us posted on y'all's progress.

Day 87.

Pauline here.  It seems if I'm the one posting, things are not peachy keen at all.

Memorial Day weekend has not been a good one for Boone.   It started out with maybe getting on clear liquids, but that was stopped.  On day 86 when Dr. S. was in the room on regular rounds, Boone's O2 level dropped into the low 80's.  Doc had him breathe heavily for several breaths but there was no rise in his oxygen level.  I guess since it was a holiday weekend and the ward is no where near full there was no entourage with the doc, just the two nurses.

Before Doc S. ordered it, one of the nurses was hooking Boone up to the oxygen feed in the head wall.  Doc ordered it set on 6 and to be hydrated.   After a bit, the best Boone could do was hold his O2 in the low 90's.  The other nurse began showing Doc Boone's morning heart rate and BP history.

"You see his BP has been dropping all morning, and his heart rate has been fluctuating a bit".  Doc studied the history report on the vitals contraption.  You could clearly see that the muscles in his face were tensing up.   Doc asked Boone to sit up.

I was sitting behind Boone as he sat up I could see he was shaking.  Had he suddenly gotten cold?  He hadn't been cold in days.   Boone looked up at Doc and said "You look worried".  

Doc said "I am worried.  I'm not sure what's causing this."   I think it was then he really noticed Boone was shaking.  Doc put one hand on Boone's shoulder, and rubbed Boone's bald head with the other for several seconds, all the while making eye contact with me.   He said " I'm going to take of you Buddy, don't worry, I've got your back".   He looked worried to me.

Boone was sent to have a chest scan.  We never heard any results from it.  When Doc came in this morning he wasn't lingering at all, more tests.  I can't recall him ever leaving without asking if we had any questions before.

Boone was supposed to have returned from Radiology to the room within the hour.  It's a holiday, no backlog, in and out.   I waited for almost 3 hours then had to go.  The dogs can only cross their legs for so long.   When I called Boone later, there was no answer. Second call, he answered.  He was crying.  He hasn't eaten in over a week; he's so hungry, so tired, and afraid.  Even so, with the IV food he has gained up to 132 pounds.

Boone's blood counts are fluctuating up and down.  He had a transfusion several days ago.  I didn't see the bump in the numbers that I had expected.

Boone is very depressed.  Can't say that I'm any better.  Got home from the hospital with a long to do list, and instead decided to take a nap that lasted until about 7:30 when a good friend called to check in.   I thought it was 4:30.  Got up to get some chores done, realized how late it was, thought I'd post instead and go back to bed.  

Day 84.

Pauline here again.

Boone is looking better.  He weighed in at 127 pounds this morning.  The IV bag food must be really good stuff.  They put him back on NPO.  No food hoping his stomach and intestines will settle down.

Unfortunately, the verdict appears to e Graft vs Host Disease (GVHD).  I had thought that an infection would be worse than the GVHD, but by the looks on the doctor's face, I'm thinking the GVHD is more worrisome.  My doctor said if it had been a viral infection, that those are very hard to fight.  So yin and yang I guess.

It appears right now that Boone may be in the hospital for a while.  He's been in a week now, and the only thing we've heard is maybe a week or two more, maybe three.  ( Maybe more ?).  I hate that Boone is missing his last opportunity to be in the condo.  It has to be ready to show; as in empty and cleaned by June 25.

-------

Doc just came in.  Definitely GVHD.  They put him on steroids yesterday just in case.  Doc said he's glad he went ahead it did it before the lab results were back.  Now Boone is still NPO, they must tweak the steroids to get the right dosage, then hopefully to wean him off asap.  Now he's acting like if Boone can get off the IV bag, he might can go home in a week or so.  I do hope so.

Doc also said he needs visitors, especially at night to help with pulling him back to reality from the lucid dreams.  I suppose this is the classic "sundowning".   Come visit if you can.

All in all, he is much better. He's reading and watching Roadrunner cartoons.

Beep beep!

Day 82 and counting...

Pauline here.  Still in the hospital.  No results yet from yesterday's CT scan and colonoscopy.  Trying to find that bug has proved to be pretty tough.

Not sure where Boone is.  He's having those reactions to the drugs again.  He's been lying here all morning talking to a bunch of people on the telephone.  Not sure where the phone is, or who he's hearing, but he's definitely busy.  He's set up a couple of meetings, canceled one, talked to someone about how they doing are after their father's death.  Alright I hope.   The discussions don't seem to be particularly about work anymore.

I'm afraid he's going down that delusionary path that sent him to the ICU the first time.  He started talking about having scissors again.

He called me at 4am wanting to know where I was.   He was having issues figuring out what was real and what was not.   The phone call ended in mumbling and then he just goes away.  No goodbyes, just silence.  He seems very worried in these middle if the night calls...there have been 3 so far.  I'm fearful that the delusions will go from merely confusing to monstrous and scary.  So far, no freakish looking eyes.

They are bringing him some solid food today.  He thinks he hasn't been taken of NPO status, but tried to eat a bit anyway.  Finally something tasted really good...the packaged OJ.   Then he tried a spoonful of Rice Krispies.   Then vomited only a little.  He thought that went pretty well and wants more OJ.

We are waiting on the doctors rounds.   I need to talk to them about his mental state again and find out what results if any came from yesterday's tests.

Overall the IV feeding has really improved his appearance and strength.  But beyond that, I'm not seeing much improvement.

Today is transplant day for Jeri's brother.   Happy re- birthday, JB.

Here we go again...

Pauline here.

(Sorry about that title line...Blogger wouldn't let me post without a title.  grrrr.)

Actually I believe this is day 79.  March has 31 days minus the1st which was day Zero. April has 30 days and now this is May 19.  If my math is correct, 30+ 30+ 19 = 79.  

Day 79 was definitely better than day 77.

Day 77 was the normal 7:15 AM clinic visit.  Boone was feeling pretty bad; after all he had the colonoscopy the day before.  As we all know there is the day of fasting,  and the day of the procedure.  Not much eating happened on the scoping day, he just didn't feel well enough to eat.

When we arrived at the clinic, there was no one at home.   Peculiar.  I knocked on the door, knocked on the back door, no response.  I called their number and got a recording saying they were closed and didn't open until 8 AM.  Peculiar, our appointments are always before 7:30.  Boone was miserable.  I went outside, I've forgotten why, but in the process I ran into two other patients and spouses that were there for early appointments.  One of the spouses, who is a nurse took charge and went somewhere in the dark halls of SCCI and found a lone nurse lurking in the office.  

By the time she was coming back with the good news, I had retrieved the wheelchair that I had forgotten about, and had gotten Boone in it.   We headed for the elevator, and the suddenly in front of us was Dr. S. looking very dapper in baby blue.  (It highlights his blue eyes.)  He had taken one of the patients who's wife was struggling with her large husband, gotten him in his wheelchair and was pushing him up to the clinic.  I followed him pushing Boone in his wheelchair.  He was not happy about the mixup, and promised me they really have their ducks in a row....apparently they missed calling 3 patients to reschedule to later visits.

By this time, Boone was slumped over with his head in his hands trying to not feel so sick.  I was visiting with the other couple in the room.  At one point the patient pulled his mask down...I had no idea he looked like that!  Talked to him many times, never saw anything but eyes.  HIs wife, the nurse was loaded with all sorts of info, like one man that had been in the hospital on the BMT ward for over a year...OMG.  I can't even begin to imagine.

After a short wait, we were ushered back to the exam room.  Boone weighed in at a strapping 116 pounds.  (Oh how I wish I could weigh that little again - it only happened for 1 day, but it was great!)  

His thighs are thinner than my forearms.  They immediately started up an IV of saline.  That's an hour drip.  The results of the colonoscopy were supposed to have been sent to Dr. S., but the Pathologist hadn't sent them up yet.  

Boone finished up his drip and we went home.  Both of us were exhausted and went to bed to catch some z's.  As always, I turned the ringer off on my phone.  After about 5 minutes I opened my eyes and decided to check the phone.  There were 2 messages from an unknown number within a couple minutes of each other; so I called back.  It was the LPN at the clinic.  She said Dr. S. wanted Boone back in the office ASAP.  Bring a bag....

I went to wake Boone up to tell him.  He broke down.  He knew they would put him in the hospital. 

They said he had an infection in his GI tract and had to be admitted back onto the ward.  Boone was miserable.  Sick. Unhappy. Tired.

They set up a CT scan that required Boone to drink 2 quarts of that nasty gut cleaner...again. I left the hospital to get the dogs & Leukka and head to the farm. Nothing more I could do for Boone. At least the dogs and cat could run a bit out there.

The infection has not yet been specifically identified. A specialist is coming in tomorrow to see if she can figure it out. They put Boone on IV food at the rate of 7000 calories per day. He's gained a pound already.

He slept pretty much all day Saturday, but today, he was feeling better. His skin is so silky smooth. No psoriasis to be seen. He was rewarded this afternoon by being put on soft foods rather than being NPO. Ice cream.

We don't know yet the criteria for release. Kill the bug? Gain X amount of weight? Or just feeling much better and eating?

He's asking for his book and reading glasses. Excellent.

May 15, 2013

DAY 78 – MORE FUN TO COME

 

I’ve been having nausea and diarrhea for the last few days.  We saw Dr. S yesterday and he says it may be GVH, Graft Vs. Host disease.  GVH is common in transplants.  I’m hoping that this will be a mild case since I had a sibling donor. 

Typically GVH manifests itself in the skin, rashes and such.  My skin is doing great but digestive track, no so well. So tomorrow I have a full GI series.  They will look down my throat and up my stoma.  The stoma is the nipple created protruding from the abdomen to replace the rectum. I’ve have mine since the emergency surgery back last September.  The surgeon, Dr. R, refers to my stoma as a ”beautiful nipple”.  I’ve had colonoscopies before, no big deal, just get the injection and sleep. They do their thing and you wake up groggy.  I confess it might be interesting to be awke this time because they will be going in the stoma instead of the “regular” way.  I say interesting and it would be except that there is no way I’m staying awake for one of these procedures.  That would too strange, painful, weird, creepy, etc.

So today I’m doing the fun part, the prep for the procedure.  Most of you I’m sure know that this means drinking a half gallon of a mixture that cleans you out.  Really cleans you out.  Everything has to be clear.  The GI guys are picky that way but having heard tales of folks not cleaning before the procedure I can understand why.

We go back to Dr. S on Friday to get the results.  I’ll keep you posted.

Thanks for stopping by.

 

Boone

                                                             

Pauline here.

Mr. Boone is coming back.

The other night, we did what we used to do almost every evening.  We played Wii - almost always frisbee golf - and Boone plays music.

His musical choice for our enjoyment was his compilation of his favorite Pink songs.  Of course, you can't do Pink without  "Get This Party Started".

What a wonderful song one of my favorite happy tunes.  But the best part, the absolute best part was, when in the song "Stupid Girls"  the line "I don't want to be a stupid girl" came around, he was shaking his ass.

Not that there is one there to shake, but I haven't seen him dance since around December.  It only lasted a few seconds, but it was beautiful to behold.

May 10, 2013

ANOTHER DAY

Dr. day today but no IV’s required so it only took two hours; slow lab day.  Last night Pauline went to the grocery and on her return hit a curb that was not where it was supposed to be and flattened the front right tire.  Since it was late at night she elected to drive home on the flat.  This is my car.  It is a mid-size with front wheel so the driving was not easy.  Needless to say the tire is in shreds.  We opted to deal with after the AM clinic appointment.

When we returned from the Dr. in her car, Pauline dropped me at my car to take off the tire.  Luckily there is a really good tire store just a couple of blocks away.  Pauline was not feeling well and came on upstairs.  I just joined her after about an hour of wrestling with the jack and tire.  I knew I was out of shape but damn!  I had to get help to loosen the last lug nut.  Then I could crank the scissors jack just a few times before I had to stop and catch my breath.   Do give me a bit of credit since the tire was on the front so the weight of the engine came into play.  Anyway I’m upstairs now and Pauline is resting.  We’ll take the tire in to be fixed later.  I would do it myself but her car is a stick shift and I am certain, with my luck, that I would have to stop on a hill.  Not sure I’m ready for that yet.

But things continue to get better.  I feel stronger and better most days.  Eating seems to alternate; 2300 calories one day and 1600 the next.  I’ve been tracking it   Yesterday was a bad day for eating, felt nauseous in the afternoon and through up a bit.  That’s probably why I was down a pound today.  Getting a bit more exercise, trying to anyway.  It’s bad because I have next to no muscle tone.  But we’ll get there.  Don’t have to go back until Tuesday so lots of time to eat before then.

Thanks for stopping by.  Thanks especially for your comments.  If you have any questions please leave them in a comment and I promise to respond.  We all need all the info and comfort we can get.

 

Boone

 

May7, 2013

DRIVING MR. BOONE

Yesterday I drove for the first time in months.  By myself.  Pauline may feel like the mother of a teenager.  It was an easy drive to the clinic and back but it’s another step.   I’m still skinny as a rail but I was up 2 pounds at the weigh-in today.  That’s after holding steady for three days at 119 pounds.  I’ve never had a weight problem, till now, but this is ridiculous. 

Still, day by day I’m getting stronger.  My blood numbers are good.  I’m on an often interrupted Tuesday/Saturday schedule.  And the last couple of times I have not had to stay after class for a IV of something with a long unpronounceable name.  I think the mid-day nap may be becoming part habit instead of all disease related.  I like naps.  Heck I like sleeping.  Maybe that’s why I kept my eyes closed so much in the hospital, especially the rough spots; treating the whole thing like a dream or nightmare.  Both are over when you wake and neither stays in your memory more than minutes, usually.

In my case Pauline is my memory for the dreamares and she has told me some, but I suspect not all, of them.  She told me of a night when I was dreaming that I was talking to major client on the phone. She knew this because I was talking out loud, quite distinctly and calling him by name. Being bored, Pauline decided to see if she could play the part of Mr. S.  And she did. I should note that Pauline knows the man in question and, in fact, told him this story just a couple of days ago. As Mr. S. she told me that I was their favorite architect and that they were giving me a huge new project.  Heck they like me so much they might just give me all their projects.   I’m told that during the call I had my chest puffed out and sported a grin that would be the envy of the Cheshire Cat.

Of course not all the stories are so good, especially the ones from the trips to the ICU.  That got pretty rough a couple of times.  Pauline told me the other night that at one point she thought I was about to do die. Maybe it was the night of the CPR I still feel in my chest.  I don’t know.   She was convinced enough that she actually told me to go if I had to.  She told me that she would be alright.  Jesus.  I can’t imagine the situation being reversed. I’ve tried.  I cannot imagine it.

I am so glad that I have no memory of most of that part of my stay.  And I’m so glad I have Pauline.

 

Boone

 

May 1, 2013

DAY 70 – DID A RECOUNT

 

I figured out at the Dr. the other day that I have miscounted as noted above.  That wa nice.  Otherwise things are well but could be better.   Twice now I have been given days off from the Dr and every time something happens.  A couple of weeks ago Dr. B put me on a Monday-Wednesday-Friday schedule but then called that afternoon to put me on two-a-days.  Monday Dr.S put me on a Tuesday-Friday schedule, even better. Then last night I had blood in my urine again so it was back to the Dr. this morning.  They don’t seem overly concerned but want to get this under control lest I wind up back in the hospital. This is all new to me and I am a bit nervous.  Headed back to the Dr. in the morning.

I also learned that diarrhea is a major sign of graft vs. host disease and that wearing a colostomy bag makes the diarrhea harder to detect.   Something else to be nervous about.  But still so far so good.  Things mostly do seem to be getting better.  Still very tired.  In fact I think is tis nap time now.

Thanks for stopping by.

 

Boone