Thursday, January 8, 2009

Pre-Transplant Workup

Lila goes in for her Stem Cell Transplant next week. Before she can be admitted to the transplant unit at Duke, there are a few tests that she has to "pass". By a few, I mean a bazillion. This is an email of the schedule we have and will be following for two-ish weeks from the Bone Marrow Transplant Team nurse (names have been omitted to protect the privacy of people who probably don't give a crap whether their name is on here or not):

Friday January 2, 2009

9:30am Please check in at the Pediatric Blood and Marrow Transplant clinic located on the 4th floor of the Children’s Health Center. Lila will be checked in (height, weight, vital signs). We will draw some of the pre-transplant labs from Lila during this visit. She will also have a battery (nasal swab) to check for virus. A Pediatric Nurse Practitioner, will examine Lila and review her medical history with you.

Please take Lila to the 1st floor of the CHC to Pediatric Radiology for a chest x-ray.

Tuesday January 6, 2009

9:00am Please check Lila in on the 4th floor of the CHC. Lila will have her infusaport accessed for additional labs and will also be used for her GFR (kidney test) today.

9:30am Please check into the 1st floor of the CHC. Lila is scheduled for a glomerular filtration rate “GFR” (a kidney function test). This is done in the nuclear medicine section of radiology. There is no special “prep” for the GFR. It is a simple test where a small amount of dye (also referred to as a tracer) will be injected into Lila’s IV. Then, a tube of blood will be drawn at 1-hour and 3-hour intervals following the injection.

10:30am You are scheduled to meet with one of our Social Workers in the 4th floor CHC waiting area.

11:30am I will meet you (also in the 4th floor CHC waiting area) for a pre-transplant education session.

Wednesday January 7, 2009

8:15am Lila is scheduled for a CT scan of the brain, sinus, chest, abdomen, and pelvis. Please review specific instructions regarding nothing to eat or drink prior to the scan (enclosed). You will check in at Pediatric Radiology on level 1, CHC.

11:00am Please come to our administrative offices located at 1400 Morreene Rd. to meet with the following members of our team:

11:00am Meet with our Family Support Program

11:30am Meet with insurance coordinators

1:00pm Meet with me to review pre-transplant education material

Thursday January 8, 2009

8:45am Please check Lila in on the 4th floor of the CHC. Lila will need her height and weight checked before today’s appointments.

10:00am Please check Lila in on the 2nd floor of the CHC. Lila is scheduled for Crying Vital Capacities. This is a study of lung function. Lila will also need an EKG (Heart Study) done while on the 2nd floor.

11:00am Please check Lila in on the 2nd floor of the CHC. She is scheduled for a hearing test in the speech and hearing clinic.

12:00 Please check in at CHC level 3 for an appointment in pre-op screening clinic.

2:00pm Lila scheduled for an echocardiogram (heart study), done on the 2nd floor of the CHC. Directions are enclosed.

Friday January 9, 2009

TBA Lila is scheduled for a spinal tap, to be done in the treatment area suite on the 3rd floor of the CHC. This procedure is planned to be done with anesthesia. Please refer to the guidelines enclosed regarding nothing to eat or drink prior to the procedure.

I will meet with you to review transplant-related education materials.

Monday January 12, 2009

1:00pm We are scheduled to meet to review Lila’s results and review the plan for upcoming transplant, including consent forms. Please come to our administrative office located at 1400 Morreene Rd. in Durham.

Wednesday January 14, 2009

Lila is tentatively scheduled to have her double lumen central line placed in the operating room by one of the pediatric surgeons. We are planning to admit Lila from the recovery area to 5200 (bone marrow unit).

The End.


lindsey said...

This kinda breaks my heart. I'm not sure how you cope with all of this, but my hat is off to your little family.

The only silver lining is that at least you KNOW what needs to be done, can plan (?) for it, and brace yourself for the hours and hours of time you will be spending in the hospital.

We'll be thinking about you guys over the next few weeks.

Brooke said...

So, you're about halfway done with all this crap. How's it going so far?
You're all in my prayers, as always.

Ana said...

Hum, when's lunch? It's not like you're busy or anything.

Seriously, are they actually this prompt? Like, you will actually get into the procedures when they say that you will? Ben surgery was always scheduled at "time" and he always had surgery at "time+4 hours". Maybe Duke is superior to Wake?

gaye said...

wow, what a mouthful...sometimes having it be so "clinical" makes it easier to get through. We are all here for you and love you all

Shiloh said...

well hells bells. good luck.

Guy Mayhem said...

I don't know why this sounds bad. I have way more to do and way more restrictions on my life. This is a note from Valerie just for this week.


James, we don't have the money for your Monday gelatin baths. And Red 40 stains the tub!


Stop sucking. Love, Valerie


Don't eat everything made from milk. And yes, again, butter is made from milk.


Tape Golden Girls, not your stupid nerd shows. Don't jump on the couch in spite after you read this.


Wear pants! Always wear pants!


Stop buying Small Wonder episodes off itunes. You're so behind now, you'll never catch up.


We love you guys. Give that smiley little girl a kiss for me.

Valerie said...

I have to be honest with you here, Annie. This is a real bummer. How about something more upbeat next time?

Mandy Stewart said...

Hay Annie... I hope everything went well. I'll keep praying for all of you.