Long Day

When Naomi was first hospitalized, Dr. Rashid and Dr. Walsh were colleagues at CCCN, but before long, Dr. Walsh left CCCN for Children’s Specialty Center.  Now, Dr. Rashid is also leaving CCCN for Children’s Specialty ad we are going with her.  However, Dr. Rashid will not be at Children’s Specialty until Jan. 6, so we are having appointments with Dr. Walsh during the interim.

Due to the influx on new patients, Naomi’s appt. ran quite long on Thursday.  Scheduled at 3pm, we arrived (as instructed) at 2:30pm to complete paperwork.  We did not get called from the waiting room until 4:30pm.  Then, we waited in the exam room for 30 minutes.  Yes, it was an incredibly long and frustrating wait.  I will be sure to bring plenty of snacks and knitting to future appointments.  I was thankful for the Tetris game on my iphone…. and the Time magazine article about Pope Francis that I had the opportunity to read while waiting.

Dr. Walsh rewarded our wait with orders to proceed with pre-transplant testing.  The orders were for blood tests  with a total of 5-6 tubes being drawn.  Also, orders had been issued from COH for a repeat of her chest xray and CT due to the abnormal scans back in November – the ones that led to her broncoscopy.

Her CBC showed that her ANC is holding at 1300.  Her RBCs are dwindling, but did not require a red blood transfusion.  Her platelets, as we suspected, were at the bottom.  We assumed as much on Christmas Day because she had quite a bruise on her leg from her injection of Neupogen.  Poor girl.

lion attackSince we had that run-in with the flu a week ago, I have been giving her injections occasionally to help her immune system.  The trade-off is the black and blue marks and rapid drop in her platelet levels.  The other trade-off is the screaming, kicking and abuse that I have to endure every time I have to give her an injection.  Picture injecting a lioness with Neupogen and that is what I deal with around here!

Having been out much longer than anticipated, we were starving, but the hospital was ready for us.  So, I made a quick call to Aaron who prepared our dinner.  Scared by that false positive of hepatitis A, we are trying to avoid hospital food, so we stopped by at home and picked up our homemade takeout meal of hot dogs and salad and then rushed to the hospital.  There, we ate quickly and I gave Naomi her 6pm meds late…. at 7pm.  I do not typically give her meds WITH food…. but we were late for everything and starving…..

Upon admittance at the hospital, the lab typed and match her blood to order her platelets.  Then, the radiology dept. arrived to take us for her xray and ct scan.  All the rushing around on top of a late meal WITH meds resulted in her vomiting her meds (and dinner).  When her scans were complete and she was back in her room, I ran home for a change of clothes and a second meal for her.  After all, she was hungry after throwing up her dinner.

I returned to the hospital just as her platelets had arrived from the blood bank.  She had them infused while I sipped a mocha coffee and knitted.  She attempted to watch the Nancy Drew movie for the 196th time but the hospital was requiring that she watch the Fall Risk Movie for the 379th time.  Not wanting to watch the Fall Risk movie again, she opted to turn the tv off and play on my iPad instead.  Before going home, we endured a bandage change and then were home just a little after midnight.  I think when this is all over that I will be able to write a few books…. 101 Things to Do On Outpatient Day might be one.  I am thinking a comic book style with Malakye as my illustrator might be good!

Now, we have 4 days at home.

2 thoughts on “Long Day

    • We are always glad to hear from you, Ross. We know you are always with us in heart and mind. We look forward to her health improving and having a family vacation again.

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