Another New Room and an Update

Sorry for the late update. I’m more rested today but you know how grueling it can be when someone is in the hospital. John and I both just want our routine back. 

TL;DR

• Everything is looking great.
• John got moved to a fancy room in the transplant/cancer ward.
• He may be discharged tomorrow late. 

Wed, Aug 19, 2:00 p.m.

This is when the first blood cultures were taken at the cancer clinic. 

These blood samples were taken in special bottles that foster the growth of any germs or bacteria in the blood so they can be easily detected. The cultures are checked once every 24-hours. After 5 days, if no germs or bacteria are detected then we know there’s no infection. 

This is why it’s taking so long to release him from the hospital. If they release him too early and there’s an infection, it will take hold again and we’ll have to start this whole process over. 

4:30 (approximately) we move to the ER

7:30 He is triaged

8:30 He is moved to an ER overflow room

Thu, Aug 20

8:00 a.m. moved to another ER overflow room

11:30 a.m. John sees attending doctors

This is the first time John saw the attending doctors, Patel and Chobal. It had not even been 24-hours since the cultures were drawn.

 

Although his symptoms had improved and blood clots were ruled out, the blood cultures need a good 48-hours to really rule out infection.

They also said his neutrophil count was 0, as in he had no white bloods cells specifically for fighting infection! The desired range is 500 - 1800. So, he would be given meds to stimulate these white bloods cells, continue antibiotics, and wait for the cultures. 

5:00 p.m. He’s moved to an ER hospital room. Still on the list to get moved to the cancer ward.

Fri, Aug 21, 11:30 a.m.

Drs. Patel and Chobal said John’s neutrophils were up to 180. Given all of his overall improvements they felt very good that the cultures would come back negative for infection and he was just suffering from severe dehydration. 

They gave John the choice of staying on antibiotics one more day (the hyper-safe route) or stopping all antibiotics now so he could be discharged tomorrow after the 48-hour culture results came in. Of course, John wants to go home. They will continue to monitor the culture for 5-days and be ready to immediately readmit him if he develops symptoms at home or the culture turns positive. 

2:00 p.m. I leave the hospital

5:30 p.m. He’s moved to the transplant/cancer ward. 

John actually did a FaceTime call with me so he could show me his new room. It’s huge, he gets to order what he wants for meals and he has streaming services on the TV. There’s even a couch that would have been great to sleep on two days ago. 

Friday Morning

View from his window (room 4307)

7:00 a.m.

John was sleeping when I arrived. His BP was 122/78. He feels good enough to just want to go home. 

He ate all his breakfast, took a shower, and walked down the hall. 

You’re welcome to call and cheer him up. He’s bored and we’re just in a holding pattern. 

Room 4307

John finally got a room around 5:00 p.m. He said it was still in the ER. I don’t know what that means yet. 

I left the hospital around 12:30/1:00. I was exhausted and had a massive headache. Knowing that we had all the info we were going to get today and it’s just a waiting game now, we thought it best if I got some rest. I’ll feel so much better tomorrow and can spend more of the day with him. 

Morning Doctor Visit

11:30 a.m.

It seems that their number one concern is to ensure to the best of their ability that John does not have an infection. Several blood cultures were taken yesterday to test that but they take two-days to get results. Therefore, John will stay in the hospital until those return and he will continue to receive regular IV antibiotics “just in case.”

As they eliminate different types of infections, they will stop giving him that antibiotic. Currently he’s on three different antibiotics. 

They are hoping he gets a hospital room today. We are still in the ER. 

His vitals are still good. 

He’s bored and wants to go home. Who wouldn’t!

Morning Shift

 I got here around 7:00 a.m.

They moved him from A21 to B29 but this is still just an ER overflow room. I told John he was downgraded for misbehavior. 

He rested well during the night and his BP is great. At some point his port stopped working and they had to insert an IV. 😢 Even with the port they stuck him at least three times in the arm. A port team came in this morning and cleared his port so they might remove the IV and he won’t get stuck in the arm anymore. 

I thought maybe he’d go home today but the orders still say they want him admitted to a hospital room. I’m not sure why except for that timing thing again. We probably won’t see a doctor until 11:00 or so. Hopefully he will have received the CT report from last night. I’ll let you guys know what he says. 

John was Admitted

They had already decided to admit John, I just didn’t know it when I made my last post. 

They did the CT scan around 8:00 p.m. Simply because it was so late he was going to get admitted because the imaging report would not get written until the morning. 

John was moved to an ER overflow room (A21), which is actually quiet and has walls and doors. He texted me around 10:30 and said they did not have any available beds in the hospital and that he would be spending the night in the ER. 

RECAP

This Morning

• John felt light headed during the night and this morning. He was very weak. 
• I started taking his blood pressure and it was low. 106/77
• I took it every 15 minutes and it kept dropping. 
• I called the Triage nurse at the cancer center and they said to come in for blood work at 2:00. 

At the Clinic

• I don’t know how to read the lab results from the blood work b/c his cancer will make things look worse but it’s expected. 
• They did measure his BP at 76/59 and said they wanted him admitted to the hospital. 
• We ended up having to go through the ER to get admitted because there were no beds available in the cancer wing of the hospital.

ER

• In the ER they took a ton more blood, x-rayed his chest, and did multiple EKG tests. 
• They gave him IV antibiotics even though there are no signs of infection. 
• They flooded him with fluids. I was able to watch his BP go up and up and up as he became more hydrated. He had a great BP when I left. 
• All of his tests so far are normal. No infection, no clots. 😃

I came home to take care of the dogs, get a bath and some sleep. I want to get to the hospital in the morning by 7:00 a.m.

He is in very good hands at Duke and I don’t believe he is in any danger. I still think he got too dehydrated before we caught it. 

I hope this information is helpful to ease any worries. 

ER Update

 I’m doing these updates from my phone. Forgive me if they’re short or lacking a lot of detail. 

John is doing great! His BP is up, EKG is good, urine shows no infection, and chest X-ray good.

They’ve taken him back for a contrast CT. Those results will determine if he’s admitted. 

My SWAG is probably what the nurse said this morning—just severe dehydration. The more fluids he gets, the better his BP. If true, they’ll send him home but it will be a late night. 

Thanks for your prayers.

In ER

We actually didn’t have to wait in ER for more than an hour before they brought him to an ER bay. He’s seen two doctors. They are checking everything: infection, blood clots. 

Good thing is he hasn’t not gotten any worse since before arriving but no better. 

They are giving him fluids and antibiotics. They’ve taken a bunch of blood. They plan to image his chest and abdomen. 

He’s in good spirits he’s just weak and tired.

Getting Admitted

 John’s BP is still down. They want him admitted to the hospital for several hours of fluids and testing. He does NOT have a temp, chest pain, or any other concerning symptoms. 

The immediate concern is an infection but he has no symptoms, which is good. 

He’s very very weak and just wants a place to lie down. Hospitals are not a place to get rest. 😒

I’ll keep you informed.

In for Observation

 John has felt really weak and light headed for about 24 hours. His BP is pretty low. The clinic asked us to come in so they could give him some fluids and run blood work. 

I’ll update you when I know something.

Remission

We met with the doctor today. He actually said the cancer is in remission. It’s sort of a misleading word that just means treatment is working. 

Today’s appointment went very smoothly and everyone got chicken nuggets and milkshakes. 

remission N. partial or complete disappearance of, or lessening of the severity of, the symptoms of a disease; it may be temporary or permanent. 

Treatment #5

Waiting room

It was an early appointment this morning. We are just waiting for blood work. We’ll see the doctor and then the chemo meds will be ordered and we’ll wait for a room.

PET Evaluation by me ;)

There's not really a lot to untangle in the medical report:

Pharynx	No suspicious tracer uptake.
Thyroid	No suspicious tracer uptake.
Lungs Pleura	No suspicious tracer uptake. Previously described hypermetabolic pulmonary lesions have resolved or significantly decreased in size.
Heart & Pericardium	No suspicious tracer uptake.
Adrenals	No suspicious tracer uptake.
Liver	No suspicious tracer uptake.
Biliary	No suspicious tracer uptake.
Pancreas	No suspicious tracer uptake.
Spleen	No suspicious tracer uptake.
Kidneys, Ureters & Bladder	No obvious tracer-avid masses.
Gastrointestinal	No obvious tracer-avid masses.
Reproductive	No suspicious tracer uptake.
Peritoneum	No suspicious tracer uptake.
Muscles Soft Tissue	No suspicious tracer uptake.
Vasculature	No suspicious tracer uptake.
Lymph Nodes	No suspicious tracer uptake. Resolution of inflammed lymph nodes between lungs. Resolution of inflammed lymph nodes in pelvis.

PET Shows Complete Response to Treatment

"The PET CT shows complete response which is where we wanted you to be at this point." -Dr. McKinney

 

I've got the PET report and will be going through it but this is what we wanted to hear.