Day T+ 28 and counting....

I had feared this day.  The biopsy report would be due, Boone's numbers have been steadily going down.  Dr. S looked like he was very worried last time he was in.

The news is, Boone is, repeat is, engrafting.  He's just out on the far side of the Bell Curve for his timing.  His marrow shows that the stem cells have begun to take up housekeeping.  They are just being very slow.   My guess is Boone's age plus his reacting to every drug they use, and having a severe (in my mind) reaction to the last bag of whole blood.  Doc said that's what caused the injury and damage to his lungs.  I guess that was the last trip to the ICU, where they had to jump start him.

He is better in that he does know what's going on 95% of the time.  He's very tired.  He needs help to eat just because it wears him out so.  This morning no breakfast, but I got him to drink apple juice and eat a 4oz. cup of peaches.  Now he's sick at his stomach and getting meds to help with that.

He promised he would do everything he was asked to do, including eating and exercising.  Today he did make it down the hall and back with the lovely Jeanna, his PT assistant, with a walker and of course the IV and O2 tagging along.

Lunch was difficult.  But at least there was ice cream.  He ate every bit of it.

So as far as engraftment goes, Dr. S is "encouraged".  I could tell he was happier about Boone since he read the biopsy report.  So far, no real infections, still taking antibiotics by IV.  His neutrophil count was 0.1; white ct 0.5.  

He is trying to sleep now.  Maybe things are starting to look up.

Day T + 25 and counting.

Well it's been a while since the last post.

Friday night Boone's lungs were filling up with fluid.  Even with the O2 running he was not getting enough oxygen to sustain himself.  Fortunately a nurse was in the room with him when he began the normal and natural panic attack associated with not being able to breathe.

She and others I suppose took Boone in his own bed and literally ran to the ICU.   Pretty much as soon as they got there, he coded.  Fortunately, the ICU doc was standing right there.  He said they had to do CPR for 2-3 minutes to get him back.  Then he was hooked up to an intubation machine to put oxygen in and suck the fluid out.  Three large hoses going down his throat.

I got the phone call telling me I should get down to the hospital ASAP.   By the time I arrived Boone's brother was already at the ICU.  One nurse commented that he had more machinery in his room than she had ever seen.  There was one nurse, he said sang to him to help calm him down.  Apparently, telling him he's ok and everything is fine now, made him really mad.   He asked me to sing "Soft Kitty" to him.  I can't carry a tune in a bucket, so I spared everyone that misery.

Day 2 of the ICU, his kind and wonderful nurse called me early that morning to tell me he was fine and she thought it would be good if  the family could take a day off.  Bless her heart, she told Boone she told us to stay away.  That he needed to rest.  Frankly, so did I.  On day 3 of the ICU, he asked the nurse to call to see what time I'd be there.

At least during this visit to the ICU he was more lucid.  He had been off the opiates for 7-8 days, but his pupils were still constricted.  They didn't have to restrain him as much as the last trip.  He tried to pull out the intubation equipment, but once the nurse got in his face and made him understand he couldn't do that, he settled down a bit with the help of some Valium.

He's back in the BMT ward now.  Not getting up like he should, not eating like he should, not doing his mouth rinses, or his lung exercises.  So I force him to when I'm here, and he stays fairly pissed off at me.  Frustrating to say the least, but I know he's not himself.  He's so very tired, he just begs to be allowed to sleep.

The doc came by this morning.  Said that the numbers we are seeing are not necessarily engraftment. They are going to run some tests this afternoon to see what's going on in his blood.  It's time, maybe a bit over due.

Boone is sort of resting now.  Lots of grunting and mumbling.

NEWS FLASH!!!

BOONE'S NEUTROPHILS ARE 0.2!!!!!

ENGRAFTMENT!!!!

Day T+ 21 and counting.

Doc just came by.  Neutrophils are great, but doesn't mean engraftment just yet.  We want to see the numbers steadily increase.  He said there may be days that it dips, but not to worry if the overall number is climbing.

The bed is keeping boone warm enough now that he is sleeping better.   He appears more relaxed.

Stella, from the LBD you will remember "sun downing".  That's where Boone is now.  So there is some bit of confusion left, but only right at the early evening hours.   Doc says its not too bad.  It's getting better.

The PT and I walked Boone around the short lap of the ward today.  Only once, but that is about 4-5 x  further than yesterday.

Boone is depressed.  It seems like he is feeling defeated, even though he has made it through the worst part.  He showed no emotion over having neutrophils.   His hemoglobin is down, so he will get whole blood today.  Should make him feel better by tomorrow.

I'll post a photo when I get home....for some reason it's hard to do from the iPad.

Jeri,

Just saw your comment about the DRE.  I've responded on that post date.

Until further notice, Pauline here.  Day +20.5 and counting

This is a P.S. to the earlier post.  It's also mostly for those of you who know him all too well...

He's still a smart ass.

Pauline here, again.  Day T+ 20 and counting...

This morning was a pretty wild ride.  I arrived at the hospital about 8:30 am.  It's now after 11:00 and I'm still breathing hard.

Boone has been cold, bone shivering cold.  This was going on yesterday, so this morning I brought him an electric blanket to put between him and the inflatable mattress.  Air mattresses are just like waterbeds, they will suck the heat right out of you, just slower.

When Nurse Goodbody came in, I told her I wanted to put down the electric blanket, then put a satin sheet over it, and get him back into his satin pjs.  He is so sore that scooting him around in the bed has rubbed him raw.  The satin pjs and sheet fix that problem.  We learned this when we were caring for my dad.  He was a big man and moving him was difficult, but with the satin we could practically spin him around.

Anyway, Boone was complaining of being very cold.  His blankets and sheets were wadded up so I proceeded to pull them up to straighten recover and tuck him in.  When I pulled them up I found his osteomy bag had leaked.   He was wearing his brand new super fluffy wonderfully warm housecoat, it was soaked in pure liquid feces.  No wonder he was cold, laying on an air mattress in wet clothes.  At least the smell has diminished.  I guess a liquid IV diet doesn't stink on exiting.

Nurse Goodbody and I rolled him around and washed every part there was to wash, but unfortunately, I didn't think about washing his hands until after he stuck his finger in his nose; it had feces on it too.  So we scrubbed the hands, and the nose.  I changed his bag, because I've done it more than the nurse, but honestly, it's been a while.  Just as soon as we got him clean, he spurted all over himself  again.  And again. And again.  Finally I got the ostomy bag put on before another eruption.  Not a second too soon....

So Nurse Goodbody and I got him stripped, recleaned, dressed in his satin jammies and I put down the electric blanket and satin sheet.  He slid right into the bed.  After the electric blanket started warming up, he would start to drift off to sleep, then we need blood, we need to... We need to...it never ends.

No rest for the weary.

The Dr. and his entourage came by.  Doc was ok with the electric blanket and satin sheets. (He had already heard about them)  Not too happy about the feces in the nose, but all in all, Boone is much better, he's just very tired.   His WBC is up to 0.3 shooting for 0.5.  No sign of any neutrophils yet.  But the doc seemed confidant they were coming soon.  Vitals are good.

Just as soon as Boone got to sleep, the PT came by.  We got him up and with a walker, got him to walk the length of the short hall; about 80 feet including the room, and back.  He did really well.

Boone is back in bed and now finally sleeping comfortably.   

No more shivering.

Hi Pauline here..  T + 19 and counting.

Boone is still very groggy and sleepy.  I don't see any more signs of him being delusional, except it appears he pulled out one of his IVs.  But it could have just been from rolling around, I guess.

He ate a little bowl of peaches for me this morning.  Coffee; that he used to love and would gross out over it if there was more than 1/2 t sugar per cup, insisted on 4 sugars, and it was still not something he could choke down.  I tried the chocolate Ensure.  He had no problem with it before, but now it's too nasty tasting for him.  Three swallows was all he would do.

They have started to feed him by IV.  At least that way we know he's getting some nourishment.

He is pretty down in the dumps emotionally.   He doesn't really seem to understand why he is having so much trouble.   They have ordered PT to come get him up and about.  His white board says they want 10 heel slides, 10 snow angels, and 20 ankle pumps.  This in addition to walking 10 laps around the ward.  Not gonna happen today...  Maybe tomorrow...

Vitals still good.  WBC holding at 0.2.  No neutrophils as of yet...maybe tomorrow...