"The LONGEST DAY EVER"--- Grier

I really wish I said I told you so a few times today at the clinic or pushed harder last Friday for a blood transfusion since he was borderline..... maybe today would have turned out differently....

Today was one big "cluster ____" I said that ... Grier says it was the longest DAY ever.....  After you read the abbreviated version you can decide....  Grier had an appointment at 11:30 today... I thought it was a little late in the day to do counts and possibly need blood so they said we could come in earlier JUST IN CASE he needed blood products.... I didn't think there was a chance that he would not since he did almost nothing all weekend ... not much energy at all.... and this morning his leg had a bruise on it from the shot I gave him last night... Since I am a Jr. Oncologist I knew we would be getting both today... We got to the clinic by 10--- waited longer than usual and then had to wait for counts... they came back and were horrible-- platelets were 16-- Hemoglobin was 7.2 and WBC was .6--- I was really hoping to be able to stop the IV antibiotic I was giving him 3 times a day.... but not a chance with no immune system.... They ordered platelets and blood from the blood bank... and Grier and I went downstairs for a quick lunch... We came right back up and took a spot in the over crowded infusion room and got started right away... Platelets ran for an hour and then we had to do the antibiotic that we have been doing at home for 30 minutes... 2 :00pm came and went and we were just hanging out waiting for the blood to come up... 3:00 we were asked if we wanted to come back tomorrow to do it since it was going to take 4 hours.... I said NO... it is his birthday and the last place I want to bring him is the hospital for his birthday.  They explained to me that the clinic closed at 5pm.... I think they could see the shock on my face.... because I said what if we are not done?--- They said we would have to walk over to the hospital to finish getting blood in the day hospital--- OK... we have done that before.... but I had to ask why no one stayed until the last patient finished??? yea.... no answer besides-- they used to do that... so we started blood @ 3:30 right after he was accessed again for the 5th week in a row!  At 4:30 we packed up and Grier rode in the wheel chair over the crosswalk to Levine.... we got there and they put us in a room... and I said ..WHAT about the infusion area??? And I was told -no staff was there to staff it so we were in an observation room to finish.... that was fine... it was quiet and we had a nice nurse..... Grier was awesome as usual during this whole day process.... he was counting the numbers on the pump... as soon as it got to 240 we could go home..... :)  Right before it was time to go home the girl from registration came in.... and I said.. We are just here to finish an  infusion because the clinic had to close before we finished.... she said NO--- you are here for a less than 24 hour stay... and I said yes.. less than 2 hour stay..and I was getting aggravated at these stupid procedures... long story but I had just paid a $50 copay for a doctor's visit that was basically a listen to your heart visit... and I asked him if he could take the appetite stimulant again... he thought that would be a good idea... OH good-- I am glad I brought it up since Grier weighs 35#s!  We were just going to the day hospital to finish the transfusion.... not to be admitted--- so now I get to be on the phone with billing and BC/BS to see what we were suppose to pay for.... ha!ha!

We finally made it home at 7:10 pm---- so thankful dinner was here.... :) Thanks Laurie... I let Grier open a present early... he was really excited about his new orange scooter.... I knew since he had been just juiced up that he might enjoy it for a few seconds tonight....

Some of you got to see my facebook comments.... I was getting more and more sarcastic by the minute.... it was a good thing my phone died before the day was over because who knows what I would have said..... I do know that I need an emergency charger in my purse at all times... because the itouch and my phone did not survive the whole day.... I honestly had no idea we would be there that long.

The infusion room is an interesting place... 6 beds-- 6 TV's blaring on different channels ranging from PBS.. Dr. Phil.. to JERRY SPRINGER??? It took all I had not to ask the teen beside me to cut that CRAP down.... I could barely hear Grier talk to me ... And then add in the parking issues... I had parked at the building where the clinic is ... MCP and when we had to walk over to the Hospital it makes for a logistical nightmare especially since I had them park my car and they close at 5:30--- so again I had to leave Grier while he was getting a blood transfusion to move my car to another parking lot that I could get to easier by the time he was discharged.... I actually tried to valet my car at LCHLCH --- got my ID and went back to Grier on the 5th--- CRAZY!!!! I wish that the people that made those neon light and stars and awesome decor of the new hospital also thought out the logistics of having a "frequent flier" patient --- especially the population that uses the hospital as much as oncology kids....

ok--- off to give another shot of neupogen... and then some IV meds.... sorry if I offended anyone but really this is a brief description of my day and it should not have to be this hard...