So it goes...

Yesterday was another hair rousing day at clinic!  Beads of sweat covered Gracie's forehead  and her hair was totally soaked as I did my best to hold her down against my nice round belly!  Yes I would say that was by far the worst experience accesing her port of the 4 times we've had to do it so far (and she hates it every time).  This time she kept kicking the nurse and was totally freaking out and right when the nurse went for the 2nd dressing she jerked big time and the dressing got stuck to the first one in the wrong place and almost ripped out the needle (which has to be really exact for the methotrexate she was getting).  The next 5-10 minutes (although it seemed MUCH longer) were spent holding her while she got more and more upset as the nurse tried to put dressing after dressing on to try to get it to hold in place so we didn't have to completely start over.  It was anything but fun for any of us and I'm sure Gracie would second that if she could!  We then resorted to a good movie to try to calm her down and distract her while i tried to hold her as still as possible so the access would stay exactly where it was and she could stop sweating so the nurse could slap on the last dressing.  By the end she probably had 6-7 dressings on covering her entire chest.  The next worst part is what goes on must come off so they had to rip all those dressings off before we left.  Her poor little chest was all red...poor thing.  I keep wishing I could explain to her what's happening so it wouldn't be so bad if we could get her to relax it would only take a quick cleaning of the area one little poke (and she's numb from the cream I put on before we leave) and one dressing.   But, I suppose that's our lot with a 20 month old...poor thing.  I'm hoping and praying(and maybe you all could pray) that it will get better next time and she will adjust to it like she has her blood pressure and other vitals.  She's amazing! Now she just lets them do it and doesn't cry anymore. 
Sorry no pictures this time but she passed counts which we are so so grateful for.  She has to pass her counts in order to get her treatment for the day!  Her counts looked great including her chemistry's they have to send down to the lab!  Please stay where you are little numbers!

Clinic stats

Weight: 31 lbs 4 oz

WBC: 4.9

Hemoglobin: 11.5

ANC: 1600

Platelets: 617,000 (the dr said the vincristine she's getting can cause platelets to keep producing so that's why hers just keep going up and up.  I calculated it and they are 45x higher than they were when she had her first transfusion.  WOW that's a major increase)

They upped her dose of methotrexate and she also got vincristine.  Luckily after forgetting last time she had vincristine to give her miralax and her waking up in pain from constipation I came home and immediately got her a bottle of milk and mixed in her miralax.  Hopefully it will prevent a repeat of the last experience. 

I have decided that the only sedative or sleep aid that seems to work for her is Methotrexate...it does wear her out for a couple days after.  Yesterday she took a 3 hour nap after clinic and then although she stayed up til about midnight I took a turn sleeping with her on the blow up so Todd could have one night to himself and she didn't do her regular middle of the night wake up for hours charade and we stayed in bed until 9:45.  It was a miracle.  And she took another good nap today...but she is still awake not at 10:15 pm and no signs of sleeping so our luck may be out.  We'll see how tonight goes!