Waiting again

We cannot go home until Randy goes 2 days without a fever. They continue to run tests but honestly, I think they are almost out of tests. 

There has not been a definitive answer of what's causing the fevers, appetite loss, and extreme fatigue so the treatment has been pills and IVs of antibiotics and antifungals, plus meds to prevent asthma attacks (which he does not have). The staff are wonderful and days are boring again, which are still the best kind of hospital days to have. But we really want to go home.

Our original hotel reservation was until July 24th. Obviously we're extended it a few times and now we need to again. The hotel staff have been very sweet and helpful but this time we really cannot stay in the same room any longer. So Sunday afternoon I packed up our stuff and Monday I moved it to another room.

Almost miss the CVL

Friday the IV in Randy's right wrist was clogged, so they took it out and put a new one in on his left wrist. Unfortunately the next morning his hand was very swollen. So they took that line out and put one into his right forearm. But as the day wore on it really started to hurt. After dinner the nurse tried to find a suitable vein in his left arm but couldn't. A phlebotomist came in and checked his arms a long time before saying nope, she would only stick him if she was confident and she wasn't. So the order was put in for an ultrasound phlebotomist. And at 3:30 in the morning a guy came bustling in, wheeling a portable ultrasound machine and cheerily saying "Good morning! I'm going to turn on the light now!" 

He was quite good and placed a needle in a deep vein in Randy's left forearm. Just in time Randy mentioned that he was allergic to the standard dressing and the nurse prepared the other kind. Then she removed the old IV, which really hurt. But Randy had a brand new IV, just in time for his nightly antibiotic drip.

30 minutes later another ultrasound phlebotomist came in and turned on the lights, ready to change his IV needle! No thanks, once was enough.

At one point I asked the nurse about the results of Randy's Saturday evening blood test. His ANC is up to 2,800! The doctor has warned us it will probably fluctuate up and down, but at least now there is some "up"!

ANC comes back!

The results of the Thursday night blood test: the ANC went from 160 to 330 - FINALLY!

We dedicated Friday to sleeping as much as possible. Randy dozed in the recliner all day, getting a light fever on and off. He did try to eat breakfast and lunch but nothing tasted good. Then we ordered a pastrami sandwich from McAlister's, which was good enough to cheer us both up a bit. Later Dorian woke us up at 1:30 am to let us know Randy's ANC went to 880. There's something I don't mind being woken up for - praise God!!!

Saturday was another day of resting, although Randy got some laps in while I was showering at the hotel. Unfortunately his fever still came back mid-day. This prompted an evening visit from nurse Judy who accompanies the doctor on his visits. They've given it 72 hours so now they want to run more tests: re-do the blood cultures, get nasal swabs to culture, get an EKG, and do a CT scan. They are checking if something new has developed, or should they keep doing the same thing.

Thursday night - what's sleep anyway?

Having gotten approximately 2 hours of sleep the previous night, Randy was really, really tired. Thursday, per instructions, he walked a couple of laps and sat up most of the day. By 6 pm he called it a day and went to bed.

Of course people kept coming in, all of them very kind and doing necessary things that will make Randy better, and every one of them very much appreciated. This is not unusual; many people have similar experiences and it's just part of the journey. We are everlastingly grateful to God that we are here, where the kind staff know what they are doing. But mental and emotional gratitude sometimes bumps up against the purely physical need for just a little sleep.

Randy felt warm to me when he went to bed at so RN Ryan came to take his temp - yes, fever - and came back with Tylenol.

Shortly after Ryan came to introduce RN Dorian for the shift change. 

PCA Sophia to take vitals.

Dorian came with meds.

Phlebotomist arrived to draw blood.

Sophia took vitals.

Sophia took vitals.

Sophie took vitals. Randy had a fever again, even higher.

Dorian came to give him Tylenol.

Dorian came to hang a antibiotic IV. Heart rate was also elevated so Vital checks will be even more frequent! Randy put a cool washcloth in forehead and tried for a bit of sleep before the next checkup, which came in 30 minutes.

Thursday

So we are back in the hospital again. Personally I got 3 hours of sleep, I have no idea how much Randy got. Apparently they got his room ready quickly last night so I spent this morning getting towels, shampoo, those elusive shower shoes, lotion, ect that hadn't been delivered yet. I went back to the hotel at 11:00 last night to get clothes and bathroom items for us so that helps.

Lots of people were checking in on him today, taking vitals, discussing symptoms, hooking up an IV. So yes, he's attached to an IV pole again. They are almost certain that he does not have a bacterial infection but they are giving him treatments for it anyway. They are also giving him a treatment for some kind of pneumonia, although he doesn't have that, either. Maybe it helps keep that stuff at bay, I don't know. 

What they think he has is a viral infection, or at least that's what the doctor said when he came by. The 48 hour cultures need to mature before they actually know what they might (or might not) be dealing with. Randy's got a sore throat now so he's probably going to get more cultures for that. 

The only bright spot was meeting Jeremy and Brenda at the front desk. Brenda was discharged but comes in twice a week for tests. We thought Randy was having a treatment that required him to be isolated so they prayed with me on the hallway. Then I learned that he could have visitors. Brenda, of course, stayed out because she needs to avoid whatever Randy has, but Jeremy masked up and visited with Randy awhile.

Randy's ANC continues to decrease, it's down to 160 now. He still doesn't have an appetite and we are both exhausted. This sounds whiny but this is just my blog, not Facebook, so I might as well be honest. I would not document this journey if I wasn't sure of the outcome. So I consol myself by thinking how grateful for we will be to look back at this, after Randy is well. We live in faith.

Wednesday - back in the hospital

Getting the shot yesterday seemed to stop downward plummet of Randy's ANC but it still went down a bit. And it needs to go up, a lot.

He's scheduled for daily shots for the next few days and because he's so Neutropenic the doctor does not want him to leave the area yet. The conversation about going home was pushed out until Monday. The only "good" thing this news was that it sucked out all our energy and made it easy to sleep all day.

Then between 4 and 5 Randy got the fever we've been warned about all week. Up and down, then up past the critical point. Per doctor's orders we knew to go to the ER. We called the Bone Marrow Clinic night operator who connected us to a doctor who was clueless. Meanwhile I got hold of the Bone Marrow Charge Nurse who said yes to the ER and she would alert her night staff to be ready for us.

The ER was awful. The excellence of the seventh floor is not present here. The staff seemed inefficient and indifferent. They took Randy back to triage area while I stayed in the waiting room, trying to find a spot where I could avoid sick people. Occasionally I would ask about Randy and eventually was told they had a room for him. I assumed they meant in the Bone Marrow ward so I texted Randy to tell him.  He texted back that he had passed out back there. So the room was in the ER ward, just like when he came in on 5/22. We have learned that the only way to get semi-timely care here is by passing out. Nurse Taylor took good care of Randy there but even she couldn't speed up the process. Eventually a couple of doctors came in and said Randy would be admitted to the Bone Marrow ward. 

So here we are again. There is something wrong, which is awful, but this is the right place to address it. It will be another night of prayers.

Tuesday

Today's blood test showed great platlets but the ANC fell even lower. A couple more days like this and it will be back to zero. Randy is taking this bravely but I am heartbroken. 

The nurses are still encouraging us because the insurance approved the shots to help his bone marrow. It's the same thing he got before they collected his cells for transfusion. 

Over the weekend Randy's appetite disappeared. He only eats a couple of times a day because he knows he should and even then he can't finish most things. He can't have fresh vegetables or fruits; he can't even eat a banana even though it gets peeled. The risk of an infection is too high because we cannot cook germs out of fresh foods and washing may not clean it enough.

Right now Randy's only real immunity defense is his skin, so he must be extremely careful not to get any cuts or scrapes that might let an infection in. He cannot clip his nails or floss his teeth, and can only shave with an electric razor. He cannot have a dental appointment for several months. He's taking antiviral and antifungal meds, just in case something slips in anyway.

His only other defense is wearing a mask. Even walking past someone is risky because they could sneeze or cough, or they could be coming down with a virus they don't know about. 

Randy had a slight bout of the sniffles so he got a swab test for infections. Thank God that was negative!  We think it is probably caused by that Sahara dust drifting over Florida. There is brilliant sunshine and it's very hot but there is a slight haze.

I thank God for being with us because I honestly could not stand this otherwise.

The bright side is that his CVL was removed today. He has been very anxious to get that out, even though it means they will have to draw blood the old fashioned way for the next couple of days. The technician was skilled and efficient so we don't expect any problems from this procedure.

Ups and Downs

This morning the checkup at the Blood Marrow Clinic did not give us the good news we hoped for - Randy's ANC has dropped even lower. We were stunned and worried about what this might mean. 

The decision was made to give Randy some fluids and ask our insurance for approval to give him a shot to help his bone marrow.  Soon a PRN who we know (and trust) from Randy's time as an inpatient came in to talk with us. Apparently "this happens sometimes".   

?!?

And yet, we do trust her, and the clinic nurse had already said the same thing. The explanation is the some of the high numbers that Randy had when he left the hospital seem to have been a result of the steroids they gave him to control the engraftment syndrome. Sometimes the readings can be wrong because the steroids sort of include/clumps the dead white cells with the new ones. Now that he's off the steroids, the real numbers are coming through. 

And "This happens sometimes" so nobody is panicking (except me). The medical plan is to be very careful of his health and get approval for that shot. Approval can take up to 24 hours...

On the other hand, the main reason they are comfortable with this plan is that his others numbers are excellent. His platelets are almost normal (he may have set a new record there) and everything else looks good.

At the other appointment today we had much better news. At Dr Gibbs office they took an X-ray of his shoulder and when it developed the doctor came in and just stood in the doorway grinning at Randy. All of the bone degeneration has completely, 100% healed!!! Good as new! Even the doctor was impressed!

So it was very mixed bag today. Our concern about the ANC is mitigated somewhat by our joy about the bone regeneration.

So Tired

Friday day afternoon Randy went to bed early. He slept all night and for the next two days he slept about 20 hours each day.  He only got up to use the bathroom and eat couple of times a day. Afterwards he went right back to sleep. He was not just resting, he would fall sound asleep as soon as he lay down.

Saturday he took his temperature per doctor's orders and while it did go up, it never went over 100, which was the warning to get to the ER.  

Sunday morning he said that he didn't feel sick any more, just tired. So he slept all day again.

Monday we will be able to go to the Bone Marrow Clinic (it's closed on the weekend so the ER is the only weekend option). They are only scheduled to change the dressing over his CVL but I hope they run some tests, too. 

Bad news

Randy has been out of the hospital since Monday and he's been following doctors orders - eat, sleep, drink fluids, light exercise. But we got rough news today - after stopping the steroids Randy's white cells dropped enough to tank his ANC from 2,000 to less than 500. So he's back to a Neutrophilic state and we don't know what the future holds. Very discouraging.

Waiting to go home

In spite of knowing otherwise, being out of the hospital really did feel like Randy's health had taken a huge leap forward and life should be almost normal. We celebrated with great burgers at Bev's. Even having to buy a new truck battery didn't take the shine off the day. Back at the hotel it took some time to rearrange everything to fit Randy's stuff in. The hospital room actually had more storage! We got it sorted out and picked up an Arby's Rueben for dinner at the hotel.

Since Randy has been starting everyday with laps, we walked over to the hospital for breakfast. They make a pretty good sausage, egg and cheese sandwich for me and Randy got a banana chocolate chip muffin. But that was enough to make us both tired so when we got back to the hotel we crashed hard and got a couple of hours of solid sleeping. 

There is not much do now - just eat, drink, sleep, and mask when we go out for like light exercise. Fortunately that is exactly what Dr Dean told us to do.  A few more boring days and we should get to go home.

Ring That Bell!

This morning Randy's ANC is 2,080 which is normal!

His platelets are also up, although they still have a way to go. The upshot of this and a lot of other pieces of data is that Randy is released from the hospital! Before leaving Randy rang the bell to announce he completed the hospital treatment!

He still has the device on his chest with a line into his heart and he has a few more days of steroids so we have to stay in the area. So we said goodbye to the wonderful staff on Shand's 7th floor and headed next door to our hotel room for an undertermined amount of time. We can spend a lot of that time praising God!

Almost there!

Randy's numbers continue to improve and he is feeling better - well enough that he really wants to leave the hospital. He'd like to go home but that is not an option yet so we will spend some days at the Eleo hotel. That's close enough to come back to the Clinic for the staff to check his blood counts and continue weaning him off steroids.

It will be nice to get some use from the hotel - we've been checked in since the 24th and I've only spent a few nights there. We just store our luggage there and I go over to shower.

The staff are still extremely protective of his immune system and are cautioning us that we will need to continue our vigilance even when he's discharged. We will miss these folks but are anxious to more forward!

Getting better but they moved the goalpost

The best news is that Randy's fever is gone - thank God! 

His feet are still swelling but not as much. The rash and shakiness have disappeared. His numbers are improving and he can do several laps in a row now - he's the champion lap-walker again

Unfortunately they have changed his discharge date. Originally it was expected to be Wednesday. His numbers were impacted by the steroids so the goal was moved to Friday. But the shortness of breath made that impossible. The new goal is Monday and I can hardly wait!

Waiting to get well enough to leave

The steroids wiped out the fever so last night they removed Randy's telemetry box and replaced his antifungal IV with a pill. So now he's not connected to any outside machines, which feels like a huge step.

Everything problem listed in yesterday's post is still true, and the latest concern is that any activity makes Randy very short of breath. Prior to his fevers he was walking 2 miles a day. Now he struggles to do 2 laps. The current guess (and they are guessing) is that this is a side effect from the steroids, so they want to decrease them. But the steroids have been keeping the dangerous fevers at bay, so the plan is to wean him off slowly. This will probably change his release date but we cannot leave the hospital until this is under control.

The staff continued to be great and constantly ask if we need anything. It's funny, they are generous to the point of wastefulness with things like face masks, but the non-slip (and non- reusable) shower shoes are handed out one at a time and on request only as if they are precious gold.

A sense of perspective

Randy's legs and feet are swelling. His hands are shaking and the rash is spreading. He still gets woken up during the night for tests. And he woke up several times last night gasping for breath so he's scheduled for a chest x-ray. Every day he gets a very painful shot to stimulate white blood cell production and each shot produces a huge, horrific bruise like this:

But we are so happy because his ANC numbers are up to 580!!

The first success!

This morning Randy's ANC report went from zero to 110! That means the process is working and the stem cells are building a new immune system! God is great and so good!!

We have been avoiding talking about it but there was a very small chance the new cells wouldn't grow. Can't describe how terrible that would be. But they are!

This makes everything worthwhile. Of course Randy still has a long way to go. 110 is a long way from the 3,300 he came in with, and there are a lot of other numbers that need to increase, and he needs to stay healthy all along the way. Even after his ANC is normal he will have to spend months slowly rebuilding his immunity. We will be careful every step but we know now that this process is working!

With about 2 hours of sleep last night we are laying low today. Randy had a bit of breakfast and went back to bed almost immediately. He still has a fever and feels terrible but he's getting better sleep than he has for several nights.

Every day for the last week every nurse and pa has been asking Randy if he has a rash. Today the answer was finally "yes". It's a sign of "engraftment syndrome" which is a reaction to the process. Symptoms include fever, a rash, etc. Until the rash showed up they had to assume the fever could be from an infection and test/treat accordingly. Now the doctor is comfortable ordering some steroids which should stop the fevers. We are counting our blessings.

No sleep

Unfortunately Randy's values triggered another visit from the Stat Nurse around 8:30 Monday night. He still said no changes were needed, thank God.

But during the night Randy was either burning hot or shaking with cold, and he was so restless he could not get any sleep. It doesn't help that since his fever first started he's been hooked up to a IV pole 24/7, and since Saturday he's had another device connected to his chest and stuck in his pocket. And there are 3 monitors in the room; even when we cover them with pillowcases they are still pretty bright.

Between ice packs, heated blankets, A/C adjustments, Melatonin tablets, and a portable fan, he was finally sleeping by 3 am. Too bad the nurse had to check his blood pressure and temp every hour.

By the 4 am visit we were so tired that we no longer asked what the temp reading was; we figured she'd tell us if it mattered. And she did tell us - it went up. So she removed a blanket and added an ice pack. We really can't wait for the night to be over.

A slight change

Randy felt a bit better so we walked two laps this morning. Within 5 minutes things got busy because the nurse was concerned about his morning vitals and called the Stat RNs. Five of them showed up (they seem travel on packs) but the respiratory nurses left without seeing Randy. The guy from yesterday asked Randy questions, checked a few things, and changed a setting on the Tely-box. The consensus was that his fevers are probably a result of engraftment (stem cells maturing) but because of the high risk of infection they have to eliminate everything else. So Randy got another EKG.

Mid morning he started sweating profusely. The nurse who checked him said it looked like his fever had finally broken! At last!

Unfortunately the fever came back a couple of hours later. Time for more Tylenol and antibiotics. They did some CT scans which were almost clear. "Almost" isn't good enough so he got a broader antibiotic in his IV

The Charge Nurse changed his CVL dressing with Student Nurses watching every move - this is, after all, a teaching hospital.

So for a couple of hours Randy finally felt like he was getting better, which is something to be grateful for. The rest of the day he was exhausted and listless. Breakfast was the last of Glenda's scones but he didn't have an appetite for anything else all day, which doesn't help. This fever absolutely wipes him out - I've never seen anything like it. I don't know if it's the type of fever or because he doesn't have an immune system but I am so glad the staff take it very seriously. It's also a bit scary, knowing they do so because they've seen it go bad. But we rest in faith tonight, as always.

Sunday looked a lot like Saturday

I write down how we spend time at the hospital for the same reason I write about our vacations - years from now we will look back and remember how much we have to be grateful for. In this case it will be gratitude for God getting Randy through this.

We were so tired Sunday morning and then it got busy because Randy's fever came back.

Shands used a computer system called MEWS that tracks several pieces of data (heart rate, fever, etc,) and runs an algorithm to decide when to alert the Stat RNs, aka Swat RNs. Today Randy's values triggered the Swat RNs and a couple of them came to meet him.

No action was needed yet but if that changes they will come back to evaluate and make a plan. My understanding is their main focus is to avoid or treat sepsis

Dr Dean came to see Randy. She didn't think this is an infection but it's not out of the question. She listened to his heart, looked in his mouth, and checked his ankles. Two minutes later PA Jeff came in with a student nurse and repeated everything.

PCA Lexi came in to check his vitals (temp, blood pressure, heart rate) and tell Randy he is at level Q1 now so vitals have to be checked every hour.  So there will be no sleep today.

Unfortunately Randy's temp stayed up almost all day. The bright spot was when Jerry and Lori sent us dinner from Outback: Alice Springs Chicken, baked potatoes, asparagus, bread, and desserts - so good!

During the night the Stat RNs came again, this time for real. Two came in to see Randy and 3 more lingered outside the door. They asked Randy a bunch of questions, talked with Zack, and are holding off on changes yet.

Randy got a transfusion of Platelets and potassium, and a little more sleep than last night. 

Long night

Saturday afternoon Randy got a fever. It's common at this point but it's also very dangerous so they take it very seriously.

Brittney drew blood from his CVL and more blood from his hand. It's the first time he had to get stuck since he got the CVL but they were looking for bacteria. There is a (miniscule) chance of bacteria in the CVL or hand so they compare the 2 tests.

And he got a chest x-ray.

And he was given Tylenol and will get antibiotics via IV every 8 hours: it worked and his temp went down. 

At the 7 the shift change Randy's temp went back up so they ran an EKG, then Randy went back to sleep hooked up to antibiotics in an IV pole and with a heart monitor on his finger. 

His temp did go down but at 9 pm it was up again so he got more Tylenol. The EKG indicated he needed potassium, magnesium, and hydration so those were added to his IV pole. Zack swapped on a new bag of antibiotics, then drew blood from the CVL to check for enzymes that indicate heart damage. That was a scary phrase to me. Zack said that it happens maybe 40 - 50 % of the time and they know how to manage it. 

Later PA Matt started Randy on a something to correct his occasional extra heartbeats. He also ordered a Telemetry box: they put EKG leads on his chest connected to a phone-sized box that Randy will carry in his PJ pocket. It will be monitored 24/7 by a group on the 5th floor. 

I'm not sure how much of this Randy knew; he is so exhausted. When they came in to take his blood pressure at 10 he hardly woke at all.

Zack came in several times durning the night to change IV bags and check his heart monitor. In-between times Alyssa came in to take his blood pressure.

In the wee hours of the morning someone came in to take another x-ray. By then neither of us roused much.

Neutropenic

Things I have learned along this journey: Neutrophils are a type of white blood cell that kills bacteria. The "Absolute Neutrophil Count" aka ANC is an estimate of the body's ability to fight infections. Normal range is between 2,500 and 7,000, and if the count goes below 500 it's called Neutropenic and is very, very dangerous.

However, this time it was expected and prepared for. Randy came in with an ANC of 3,300 and because of the chemo he received on the 25th, it started decreasing on the 30th and is now down to zero.

The situation is that the white blood cells that got the chemo dose are dying off, which takes about a week. The stem cells he received on the 26th are growing but that takes up to 2 weeks. This creates a gap where the old cells are gone and the new cells are not mature. 

This is the time when we have to be extra careful - everyone has to mask, we are confined to this ward, and they test him a lot. There are changes to Randy's diet now - no undercooked eggs or meat (there goes the prime rib!), unpasteurized dairy products, uncooked fruits and vegetables, and water has to be distilled or boiled.

This hasn't been a problem so far - he has enough nausea that nothing is appetizing. One night for dinner he could only eat a couple of crackers. But they are giving him more meds for nausea, which helps, as does Glenda's cinnamon scones! 

We aren't sure how the next few days are going to go so I'll be sleeping on the couch in Randy's room awhile.