Day + 60 (Total # of days in hospital= 69)

SUNDAY:
Dianna is STILL in the PICU. :-(
It has been 10 days in the PICU this time.
She is still having the problems with high blood pressure.
Dianna is on an IV drip and oral medications.
The doctors have tired several different oral medications-
but when they begin to reduce the IV medication her blood pressure goes way up. :-(
She can not leave the PICU until she is off the IV drip for blood pressure. :-(

Day + 56 (Total # of days in the hospital= 65)

WEDNESDAY:
Sorry it has been so long for an update-
we are STILL in the PICU!
Dianna is still having problems with high blood pressure.
The doctors have tried several different types of blood pressure medications.
I hope they find the right combination for Dianna- soon.
And they have switched Dianna from "Cyclosporine" to "Tacrolimus" (Prograt).
We will see if this might help???

"HAPPY THANKSGIVING!"

Day + 52 (Total # of days in hospital= 61)

Thursday: Teresa & Emma (FA) Clifton stopped by for a visit.

Thursday: Ms. Dent, Ms. Tierney & Ms. R (Dianna's Teachers) stopped by for a visit. :-)

Blood work for 11/20/08-

white blood cells: 3.7, red blood cells: 4.04, HGB: 12.7, platelets: 55, ABS neut: 3.108
THURSDAY:

Dianna had a good day, but her blood pressure was high all day.

Then- about 7:45pm Dianna's blood pressure went so high that she began to have a seizure. :-(

She had another as they were getting ready to transfer her to PICU. :-(

They rushed her in because she began having problems breathing! :-(

Dianna was put on a breathing machine for about an hour till her breathing was back to normal.

FRIDAY & SATURDAY:

The doctors are trying to find the best combination of blood pressure medication for Dianna.

The other medications that she is on are causing the high blood pressure.

(steroids, cyclosporine, probenecid & cidifovir)

Dianna is NOT happy with being in the PICU.

She keeps crying-- "Mommy, I want to go home!" :-(

Day + 46 (Total # of days in hospital= 55)

Blood work for 11/14/08-
white blood cells: 3.5, red blood cells: 3.31, HGB: 10.0, platelets: 61, ABS neut: 2.625
FRIDAY:
The steroids seemed to help with fever.
This morning Dianna had to take the Probencid again before the Cidofovir.
Dianna is sick at her stomach all day. :-(
The afternoon Dianna began to bleed at the sight where the Central Line was removed from her chest.
During the evening it got heavier- the bleeding was so heavy that her bed and gown had to be changed twice.
The doctor said that if the bleeding did not stop that she would need to go back to surgery to reclose the wound.
But, thankfully it finally stopped bleeding!
SATURDAY:
Today was a much better day...
Dianna was able to eat and keep it down today. :-)
She also got up to walk around the nurse's station.
But, her blood pressure did get very high today (because she is back on the steroids again). :-(
SUNDAY:
Again another good day...
Dianna was able to eat and walk. :-)
She is still having the high blood pressure. :-(
Tomorrow Dianna must begin taking the Probenecid and Cidofovir again.
**Pray that she does not get sick at her stomach AGAIN.**

Day + 43 (Total # of days in hospital= 52)

Blood work from 11/12/08-
white blood cells: 3.4, red blood cells: 3.57, HGB: 10.6, platelets: 23, ABS neut: 2.720
Blood work from 11/13/08-
white blood cells: 3.3, red blood cells: 3.40, HGB: 10.3, platelets: 101, ABS neut: 2.178
TUESDAY:
Dianna ran a fever all day- so all she wanted to do was sleep. :-(
WEDNESDAY:
Dianna is still running a fever. :-(
Dianna received a platelet transfusion.
Dianna has two virus- BK Virus and Adenoviral (ADV).
Dr. Goldman wants to start her on "Cidofovir" (it treats viral infections- she must take by IV 3 times a week for 3 weeks).
Before taking the Cidofovir (CDV)- Dianna must take "Probenecid" to help prevent renal failure (by mouth- 3 hours before and 1 & 8 hours after CDV).
Also extra IV hydration at 3 times, beginning 1 hour before and till 1 hour after completion.
THURSDAY:
Dianna is STILL running a fever! :-(
Last night she was not able to keep anything down-
The doctors have switched her back to IV medications again. :-(

Day + 40 (Total # of Days in hospital= 49)

MONDAY:
Last night still having a fever. :-(
First thing this morning Dianna was off to "Day Surgery" again! :-(
Dr. Goldman wanted to remove her "Central Line" ASAP-
he said it had an infection in it and the reason for the fever.
Her surgeon was able to work her in this morning.
Dr. Herman removed the Central Line in her chest and inserted a temporary line in her thigh.
Once the infection is gone- she might have a "Port" inserted into her chest.

Day + 39

Blood work for 11/07/08-
white blood cells: 5.1, red blood cells: 3.08, HGB: 8.9, platelets: 169, ABS neut: 4.488
Blood work for 11/09/08-
white blood cells: 5.6, red blood cells: 2.55, HGB: 7.3, platelets: 43, ABS neut: 4.816
FRIDAY:
Dianna woke up grumpy. But the doctor said she can now have mac & cheese.
(She said that is still not real food.)
Dianna had a fair day till around 6:00pm when she began to get a fever.
It got up to 103'.
We had to wake up several times during the night to check her fever.
SATURDAY:
Dianna woke up grumpy again.
She had a low temperature most of the day, but when it got dark her fever began to go back up. :-(
The nurse gave her some medication and she went to sleep for a couple of hours, then woke up.
She could not sleep, so we watched TV till midnight.
Dianna woke up again around 4:ooam- fever and chills. :-(
SUNDAY:
Dianna woke up in a GOOD mood. YEA! :-)
Dr. Goldman came in today and said she could eat anything she wanted on the hospital menu. YEA! :-)
The kidney specialist does not have all the tests results yet.
Later- the nurse told me that the doctor had received more tests.
Tomorrow- he might have Dianna's "Central Line" replaced or removed for a while.
It looks like this is where the infection is coming from...two positive cultures. :-(
I will UPDATE tomorrow (Monday)-

Day + 36

Blood work for 11/06/08:

White blood cells: 5.9, Red blood cells: 3.48, HGB: 9.9, Platelets: 41, ABS Neut. #: 5.251

TUESDAY:

This morning Dr. Lenarsky said that Dianna could now try "soft foods" but NO milk products.

This still does not make Dianna happy, because many of the foods that she likes have milk products.

WEDNESDAY:

Last night Dianna began to get a fever.

The doctors started her on a couple of antibotics and Tylenol.

Today, it got up to 104' around 1:30PM.

She was given more Tylenol and it started to come back down.

Finally, about 7:00PM it was down to 99'.

Dianna slept most all day today till 7PM, then had a hard time going back to sleep at bed time.

Finally went to sleep around 12:00AM.

THURSDAY:

Dianna did not want to wake up this morning after going to sleep so late.

At least she does not have a fever today. :-)

But all the extra medication has been hard on her kidneys again. :-(

The Kidney Specialist came by to see her and ordered more tests today...

Day + 33

Blood Work for 10/31/08-
White blood cells: 2.5, Red blood cells: 2.59, HGB: 7.3, Platelets: 123, ABS Neut. #: 2.150
Blood Work for 11/03/08-
White blood cells: 3.1, Red blood cells: 3.01, HGB: 8.5, Platelets: 68, ABS Neut #: 2.449
FRIDAY:
Dianna is still having blood in her BM.

First thing this morning at 9:00am, Dianna had a GI Scan.
They put a little chemo. in her blood then put her into the machine to see if they could see where the blood loss was coming from.

She was in this machine for two hours.

(They did not find any signs of bleeding.)
Next, Dianna was sent to have a Colonoscopy and an Upper GI Endoscopy.

She did NOT like this at all. :-(
(They did not find any signs of bleeding, but did take Biopsy to rule out a virus.)

After returning to Dianna's hospital room at 4:15pm-

Dianna rested for several hours.
Finally at 9:00pm-

Dianna was ready to get up and "Trick or Treat" with the nurses...
Everyone had a good time! :-)
SATURDAY:
The doctor came in and said today no tests.
Dianna gets a day of rest. :-)

But still no food...he is wanting to let her gut rest.
Dianna is not happy- she says that she is starving! :-(
She has not been able to eat since Wednesday afternoon.
Finally, last afternoon her IV food arrived.
Still Dianna is not happy, "she wants real food".
SUNDAY:
Dianna is having pain passing the blood clots and her blood pressure was high again.
(The doctors had taken her off the medications by mouth and back to IV)

MONDAY:
Back to oral medications for Dianna
(The IV medications seem to be the reason her blood pressure was so high-???)
Today- her sugar level and blood pressure was much better!
She is still not able to have solid food, just clear liquids for now.
We hope her gut heals soon!