Day + 27- MRI today + Odd visitor

You're not my regular doctor!

Dr van Rhee wants an MRI with contrast today. Deb has been given the dye via an IV. Any minute the door will open and a driver with a wheelchair will show up to drive Ms Daisy down to MRI. 

Our hospitalist doctors are meeting in conference with Dr van Rhee tomorrow to discuss the plans for Deb.

For those just tuning in, the days in the title above  and chart below are days  since the infusion of the Natural Killer Cells obtained from our daughter Amanda and expanded at Baylor University. Additionally, Deb has had 2 stem cell transplants plus a boost, which to us appeared just like another stem cell transplant. 

Platelets -(Normal range 150-500)a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -(Normal range = 0.0-10) An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.

Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3
8         2.84               25            230.2
9         2.32               12            234.1
10       2.66               24            220.1
11       2.50               15            196.0
12       2.54               28            186.0
13       1.98               18            181.0
14       1.22               28            199.9
15       0.95               20            138.6
16       0.83               32            129.4

17       0.86               22            121.4

18       0.70               12            110.3 

19       0.55                9             159.2

20       0.75              14             162.9

21       0.36              26             127.9

22      0.53              13              86.2

23      0.34              28             59.6 

24     0.29               14              95.8 

25     0.38               28            114.5

26     0.40              17              129.1

27     0.37               29             87.0

Day +26- Another Day and Night in Hospital

Keri has been helping Deb since we first came to UAMS. She used to drop in at the Markham to draw labs and encourage the patients. Now she is a quality manager and teaches nurses new protocols.

The Routine for living in the hospital is to lay around all  the time, have IV's in-process constantly, food trays brought in three times a day, labs all the time, the trash and dirty linens picked up, pills brought on schedule, and lots of naps. Plenty of middle-of-the-night company! Mid morning, the doctor makes rounds with his entourage. 

Our young nurse is about to have her first child-a son! He will be named Ross. Congrats! She regularly goes to third world nations on medical missions. She's spent a lot of time in Haiti and Nepal.

The fun part is the relational aspects of caregivers to patient. We've had visitors from over at Infusion-4 in the Rockefeller center drop is several times. The nurses and Techs work 12 hour shifts. We get to know about each other's families and interests. Classmates  and caregivers meet in the hall or in the refreshment room. Everyone has a story. We get to enjoy the stories and share ours.

We'd love to hear yours! 

Our tech today is so cheerful! It's hard to be sad around her! She serves Deb in the most pleasant ways and is a constant encourager!

 This afternoon one of the Chaplains called on us. He used to work as a Nike Exec but had wanted to work in ministry all his life. Retirement finally brought that opportunity. His wife is a PA over in the Aging clinic. We hope we live long enough to need her services! Do you?

Deb needed platelets as you can see from the chart below. They were not available supposedly. Later though, they located some. Deb's medical records say that Deb's platelets are  a 'difficult match.' They got that way because Deb has had so many transfusions that her system rejects any blood products that are not a perfect match. We've noticed that most of her matched products come from Wisconsin. Thanks, our loyal Wisconsonite!

 

 White Count-(Normal range=3.0-12.0) below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -(Normal range 150-500)a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -(Normal range = 0.0-10) An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.

Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3
8         2.84               25            230.2
9         2.32               12            234.1
10       2.66               24            220.1
11       2.50               15            196.0
12       2.54               28            186.0
13       1.98               18            181.0
14       1.22               28            199.9
15       0.95               20            138.6
16       0.83               32            129.4

17       0.86               22            121.4

18       0.70               12            110.3 

19       0.55                9             159.2

20       0.75              14             162.9

21       0.36              26             127.9

22      0.53              13              86.2

23      0.34              28             59.6 

24     0.29               14              95.8 

25     0.38               28            114.5

26     0.40              17              129.1

Day + 25 -Blood and IV's going at 8 AM

Doc explains 'the plan'

Deb had finally drifted off into a deep sleep when shift change occurred. That's the early morning start of new labs, tests, and the arrival of the food she nibbles on. 

Jeff is  the morning nurse. He's in now at 8 am reviewing the plan for the day. Looks like increasing  CRP will get Deb a CT scan soon.

Transport Services get Deb down 8 floors to the ER CT scan

Waiting for transport to take Deb back upstairs

As with other in-hospital days, I'll make updating posts all during the day. 

We are understanding more and more the plan. Deb's body is not yet covering its own immune system. Until the immune system returns IVs of various antibiotics are providing protection. Deb has a viral infection which is being treated with a high-powered anti-viral. 

Stand by for more news when it happens!

Blessings!

  

White Count-(Normal range=3.0-12.0) below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -(Normal range 150-500)a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -(Normal range = 0.0-10) An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.

Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3
8         2.84               25            230.2
9         2.32               12            234.1
10       2.66               24            220.1
11       2.50               15            196.0
12       2.54               28            186.0
13       1.98               18            181.0
14       1.22               28            199.9
15       0.95               20            138.6
16       0.83               32            129.4

17       0.86               22            121.4

18       0.70               12            110.3 

19       0.55                9             159.2

20       0.75              14             162.9

21       0.36              26             127.9

22      0.53              13              86.2

23      0.34              28             59.6 

24     0.29               14              95.8 

25     0.38               28            114.5

Day +24-Another day in the Hospital

Nurse Diane cares for Deb

Deb had platelets for breakfast...well, even before breakfast! She actually had a handful of dry Frosted Flakes with half a banana. Right now she is sitting upright in a recliner inhaling steaming water which is calming her reflux fit.

The purpose of coming into the hospital 24/7 instead of continuing our daily outpatient scheme is to lick the multiple irregular life functions like electrolytes, fevers, etc. The targeted treatments led by the hospitalists (doctors who specialize in hospital care) and cared out by the nurses is seeing results.

Over at the coffee break room I ran into a classmate whose wife has been here since January! Hopefully we will be out in a few more days. There is a 30 day eval scheduled with Dr van Rhee. Then we hope to head home for a month.

In my day job as well as with my hobbies, I deal with electronics and their foibles. Here caring for Deb, a new electronic issue is haunting me: Her fancy electronic hospital bed has a "Err3" code. Anyone? Should I reboot it?

As with previous days here in the hospital, I may make multiple posts throughout the day if warranted.

++++++++++++++++++++++++++

Update:11:20am

The nurse and doc were just in. Deb spiked a fever to 101.9 degrees and they want to know why. Deb is  on some very powerful drugs and 'loses words.' Doc says this is normal with the drugs, but it sure is strange to me. In 38 years of marriage, Deb has seldom had a loss of words.

Docs says the anti-viral drug can take up to 2 weeks to finish off infections. Hope this one goes faster! This little hospital mattress isn't that comfy, although the view is great, and the middle-of-the night company is interesting! How can they be some chatty at 3 am?

Blessings !

White Count-(Normal range=3.0-12.0) below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -(Normal range 150-500)a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -(Normal range = 0.0-10) An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.

Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3
8         2.84               25            230.2
9         2.32               12            234.1
10       2.66               24            220.1
11       2.50               15            196.0
12       2.54               28            186.0
13       1.98               18            181.0
14       1.22               28            199.9
15       0.95               20            138.6
16       0.83               32            129.4

17       0.86               22            121.4

18       0.70               12            110.3 

19       0.55                9             159.2

20       0.75              14             162.9

21       0.36              26             127.9

22      0.53              13              86.2

23      0.34              28             59.6 

24     0.29               14              95.8

Day +23 - Still in Hospital

The Head Hospitalist Checks Deb

War Memorial Stadium before the fans arrive

The main hospital just at Sunset-all aglow

Note:  Since we are here together 24/7,  I'll mostly journal our day. There will be multiple small posts all during the day. Therefore, these hospital days may be different than the normal daily overview posts previous.
Vern
++++++++++++++++++++++++++

Last night was typical hospital night shift. Every time sleep would come, a new nurse or tech would come in with it. About six am, Deb became very nauseous with predictable results. Tried meds to calm her down but in the end, a little Sprite over ice followed by some ice cold tea seemed to help the most.

Today is a Razorback SEC football game and we expect to see about 75,000 cold fans tailgating and cheering on the Hogs.  They play Mississippi State. We can see the stadium and seats but not the field itself.  For a sample cheer, see http://www.youtube.com/watch?v=RVfJ2YXUPPE
By the way, it is described as 'calling the hogs.'

We are expecting several doctor visits soon, including Dr van Rhee. They are making progress at killing the viral infection in Deb's blood.
+++++++++++++++++++++++++++

Deb has real problems eating the hospital food. I went to the grocery and brought back some Deb-essentials. Ginger Ale, fresh bananas, kidney beans, and cottage cheese. That will Deb feel 'at home' as she continues her hospital time.

+++++++++++++++++++++++++++
Some Pix: click to enlarge

From the seventh floor, first room Deb had, looking East at the Arkansas State Capital

Doctor with entourage

Looking Southeast at the Eye Clinic

Looking Northeast at the Rockefeller Cancer Institute

Checking Deb's Heart

White Count-(Normal range=3.0-12.0) below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -(Normal range 150-500)a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -(Normal range = 0.0-10) An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.

Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3
8         2.84               25            230.2
9         2.32               12            234.1
10       2.66               24            220.1
11       2.50               15            196.0
12       2.54               28            186.0
13       1.98               18            181.0
14       1.22               28            199.9
15       0.95               20            138.6
16       0.83               32            129.4

17       0.86               22            121.4

18       0.70               12            110.3 

19       0.55                9             159.2

20       0.75              14             162.9

21       0.36              26             127.9

22      0.53              13              86.2

23      0.34              28             59.6

 

Day + 22 - Another Day in the Hospital

> No fevers!

>Just identified a possible cause of the rashes: a virus in the blood with a strange name

>Will be in hospital at least  until Monday or longer

>APN Peggy came over from the infusion 4 for a checkup

White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3
8         2.84               25            230.2
9         2.32               12            234.1
10       2.66               24            220.1
11       2.50               15            196.0
12       2.54               28            186.0
13       1.98               18            181.0
14       1.22               28            199.9
15       0.95               20            138.6
16       0.83               32            129.4
17       0.86               22            121.4
18       0.70               12            110.3 
19       0.55                9             159.2
20       0.75              14             162.9
21       0.36              26             127.9
22      0.53              13              86.2

Day +21-Still in hospital

Q-So, tell me again why you are in the hospital?

A-Well, yesterday started out OK, but turned dirty-rotten when Deb began tossing cookies in the clinic. She spiked a fever and had to be rolled directly to a treatment room in an office chair. Multiple APNs looked concerned. As I was sitting in  the treatment room looking at Deb, a bright red rash slowly crept up her neck and face. I grabbed our nurse who grabbed her APN who grabbed Dr van Rhee. Is that considered 'passing the rash?'

Anyway, Dr van Rhee looked at Deb, looked at labs, scratched his head and told Deb she was a brain teaser! He suggested two days in the hospital to try and settle Deb's basics down. Deb protested since she knew how infectious hospitals are. He relented and said she didn't have to go in since 'we are so responsible.' We think that means we keep records and take our meds when told to do so. After he left, we conferred with our APNs and discussed life out of the hospital and the possibilities. We changed our minds and agreed it would be wise. So, about 7 pm they rolled Deb over to the 7th floor cancer wing of the hospital. There was no room in the myeloma ward and 2 other myeloma patients are over her with us. Room is fantastic with a view anyone would like. It is directly across from the nurses station. Vern bedded down on the pull out couch. There was very little sleep because  every time we went to sleep a nurse, doctor,or tech came in, turned the lights on, and administered meds or a test. 

But, some nasty meds were administered slowly and without danger because the staff was monitoring us. 

This morning Deb was feeling much better. Our first daylight guest was Dr van Rhee who did a checkup. Then Deb had transfusions, IVs of all sorts. Therapists, counselors, administrators, and a team of five doctors and pharmacists came in and held court in planning Deb's treatment. She went to the CT scan for a complete body scan. When we finally got back to the room about 4pm, we heard that a room in the myeloma wing had opened up and we were moving over there.

To Be continued after the move-Vern

FRIDAY MORNING UPDATE: We got packed up and ready to move, then sat and waited for hours. Eventually, we got our new room in  the Myeloma wing. Last night more labs, pokes, meds. It is now Friday morning and looking out the window we see a cold rain falling. There is an SEC  football game next door to the hospital tomorrow. Arkansas Razorbacks vs 'Ole Miss. Temps are forecast to be around thirty. The tailgaters will be chilly-willy. We are next door to the room Deb spent eleven days in several years ago. We do not want to stay that long! When shift change occurred last night, our previous nurse from the other wing of the hospital where Deb had been came over to make sure all was well. 

This morning the rash on Deb's back was worse. It had mostly cleared up. It's just 07:45 am here, so no labs back yet. Stay tuned!

++++++++++++++

Dr just examined Deb- We will be here for the weekend he said.

White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3
8         2.84               25            230.2
9         2.32               12            234.1
10       2.66               24            220.1
11       2.50               15            196.0
12       2.54               28            186.0
13       1.98               18            181.0
14       1.22               28            199.9
15       0.95               20            138.6
16       0.83               32            129.4
17       0.86               22            121.4
18       0.70               12            110.3 
19       0.55                9             159.2
20       0.75              14             162.9
21       0.36              26             127.9

Day + 20 Admitted to Hospital Inpatient

Today has been a long and interesting day. It is now 8:37pm as I begin today's blog. I am sitting next to Deb as she's located in a hospital bed in the main hospital. I just brought her a small portion of yardbird and some carrot salad. She has hardly eaten in days. Upon the advice of Dr van Rhee and two APNs we love and trust, Deb was admitted for a few days of tune up work. You see, she's had a fever for the last 20 +days. It varies throughout the night and day from 99-103.5. It did get up to 105  last week. Deb's electrolytes are in need of recharge. She has three distinct looking rashes on different parts of her body. Dr van Rhee wants to get her past these so she can recover fully. It will probably be another 6-7 days before her white count begins to normalize.Until then she is prone to infections. An unknown virus was detected in one of her blood tests.

Tonight, treatment begins to help her recover. 

Please DO NOT GET TOO EXCITED over her being admitted. It was a choice we made after being presented with the facts and options available to us. This is not an act of desperation or anything like that. If we ever get to that point, we will be up front with you.

Blessings!
 

White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3
8         2.84               25            230.2
9         2.32               12            234.1
10       2.66               24            220.1
11       2.50               15            196.0
12       2.54               28            186.0
13       1.98               18            181.0
14       1.22               28            199.9
15       0.95               20            138.6
16       0.83               32            129.4
17       0.86               22            121.4
18       0.70               12            110.3 
19       0.55                9             159.2
20       0.75              14             162.9

Day +19 -NKC number 5 checks in with 6

Our day was relatively short with a strong need for platelets. Nurse Sharon cared for Deb today. Gayle is still here visiting and met us at the clinic.

Sharon flushes a line

 After the platelets yesterday, Deb's post-platelet count was mid thirties. Deb and APN Peggy played a game guessing where they would be today. Deb guessed thirty, Peggy guessed 26. Both were shocked at the 9 they ended up with. That's considered critically low and must be dealt with. Sharon ordered some for tomorrow since she probably will need them.

Deb still has a rash issue. Here is her leg. Click on pix to enlarge

Natural Killer Cell number 5 patient Bob was back from some days at home and returned for his Day +30 checkup and labs. He stopped by Deb's room to check in with our favorite number 6. We were grateful to hear and see for ourselves how well he is doing as it encourages us greatly!

Gayle assists Deb to the elevator.

We came home with more infusers including one to help the gut. Deb had an extended afternoon nap. 
Waiting for recovery continues. 

Blessings! 


White Count-below 2 is neutrapenic and indicates Deb's vulnerability for infection.
Platelets -a whitish colored component of blood. Low platelets=higher Woozy factor!
CRP -An indicator of relative health. Lower is better. When the number creeps up, Deb could be getting sick.
Day  White Count  Platelets  CRP

0         0.04               29              12.8
1         0.07               15              77.0
2         0.03               42            140.3
3         0.07               27            144.1
4         0.23               52            206.0
5         1.21               33            168.2
6         2.32               26            214.0
7         2.29               11            209.3
8         2.84               25            230.2
9         2.32               12            234.1
10       2.66               24            220.1
11       2.50               15            196.0
12       2.54               28            186.0
13       1.98               18            181.0
14       1.22               28            199.9
15       0.95               20            138.6
16       0.83               32            129.4
17       0.86               22            121.4
18       0.70               12            110.3 
19       0.55                9             159.2