8-5-11

Infusion day #6.  Well, we survived. It was a long day. Grandma Lorraine went with us today, thanks! I feel like the day got off to a slow start.  I have no idea what the hold up is?? Linda, Avery's main nurse(Dr.Stockton's nurse) Says she orders the drugs before she comes over to examine Avery? Oh well, not much we can do about it.  The IV was put... in Avery's arm this time....normally fine but this time she was complaining "ouchies" but I just figured it was sore becasue...she has an IV in her arm. Shoulda listened to her because a couple hours into the infusion I noticed her arm was swelling..big time, right where the IV was.  It looked to me to be a little smaller than one half of a baseball? Maybe it just seemed that big to me. The nurse said the IV went Subq(subcutaneous)Meaning under the skn. So it came out of the vein...ouch. So fluid was going under the skin for who knows how long?! Poor baby. So they removed the IV right away.  The next question...should we put another one in? The machine said she had 40% left to go..but the bag didn't look like it had 40% in it.  They called Linda and she said we needed to do a new IV :(  becuse she wanted to get ALL the meds in Avery, including the meds in her IV line. I really don't think the nurses wanted to. They said it was up to me...I didn't have to poke her if I didn't want to. UGH! tough decision because it is bad enough to poke her once ...let alone twice adding more time to an already long day. And Avery was Grumpy and tired! But we did it....I wanted her to get every drop of "Muscle Juice" possible. And I also figured since these infusions cost upwards of 15 thousand dollars each time(so we've been told) I didn't want to waste a drop! She was fine..kinda. She cried so hard when they put the new IV in her hand.  I was sick to my stomach knowing I made the right choice to poke her again but holding her down while they did it. It didn't take long after the new IV. The infusion nurses figured there was about 25% of the meds left.  So I'm glad we made the choice to put in the new IV. Not to long after the new IV she fell asleep on Grandma's lap (only the second time she has ever slept there)It was a much needed nap.  Just when I think I have a grip( or am starting to get one) on this whole thing...I have to watch her go through getting two IVs. Here's to a great 7th infusion in a couple of weeks!