Day +62

I believe the theme for this stay should be feeling beat up.. it started that way and after yesterday it's looking like it will end that way.

Yesterday Georgia was scheduled to have her new line placed at 10am, Georgia was up just after 8am which was a big change from her usual 11am-12pm wake up time.. she knew something was up. They had a cancellation so we were heading over early.. I couldn't shake the uneasy feeling but chalked it up to doing this alone since Brian was flying. I met with the anesthesiologist, nurse, resident and doctor, they did their checks, I suited up in my sterile attire and walked with Georgia back to the OR. This time they used gas to put her to sleep which meant I had to lie her down, I usually am able to hold her until she is under... lying her down watching her scared face have a mask put over it and screaming until she was asleep was like having a piece of my heart ripped out.. it never gets easier. I was given a pager and said it should take about 30 minutes then she'd go to recovery. Almost an hour went by and I was sick of pacing so I went up to the surgery desk to ask if there was an update... she said, Oh, I paged you a few minutes ago... um well lady I have been all of fifteen feet from your desk so I'm pretty sure you didn't. Anyway I waited in the family conference room for the doctor to come out, when he finally arrived he said that things had gone fine, the line was working and that Georgia was in the recovery room. I headed back to our room and waited for her to arrive. I'd been waiting longer than normal when our nurse came in.. they have to do another xray but she should be down soon. Frustrated I became more antsy, knowing Georgia would be upset waking up in the company of strangers then having two xrays done. Another 20 minutes or so went by and the nurse got another call, they were asking me to come up to recovery because Georgia was so upset and they needed yet one more xray. When I arrived she was so upset, the kind of upset where you can't catch your breath... why didn't they call earlier? I got her snuggled in and asleep just in time for the xray tech to arrive for the third time. I settled her down again and waited for the surgeon to give the ok... instead he came in and said there was a kink in the line and that she'd have to go back to the OR. In my head I was telling myself suck it up, suck it up - you have to listen to what he is saying instead of falling to pieces... he said that they hoped to be able to get the kink out but if they couldn't they'd have to place an entirely new line. We were to wait in the recovery room until the OR was ready.. again. He left and I started to cry.. when will this stop, when will Georgia get to take the easy route, why is this happening to her? I cried quietly as I only had a curtain separating me from the other six or so kids in recovery.. listening to these little people wake up saying mama, I want my mama and owie, owie was horrible.

A short time later the same team of people came to do the same checks prior to surgery, I walked her back and this time was able to hold her until she fell asleep. I'd requested to wait in the recovery area for her this time which they agreed to. I called Brian and my family and cried to everyone, I just want her to be left alone. The doctor came by to let me know they were able to get the kink out and that she was asleep in recovery. After one final xray we were given the ok to head back to our room.

Resilient as ever Georgia was a happy girl by the time we were settled back in our room. We took a nap and twice when she stirred but didn't open her eyes she started signing "all done, all done" so I knew she hadn't forgotten the events of the day.

Last night she was great, walking the halls, waving, wiggling - happy to be free of her PIV. I on the other hand was feeling beat up.

Georgia's appetite slowed yesterday, not surprising with the day she had but we only have until Thursday to show enough steady progress to keep her off of prednazone. Today Georgia is getting her third dose of IVIG, something she is reacting to again.. her hands and feet got red, swollen and itchy as I watched it all travel up her arms and legs it was decided to stop the infusion give her some hydrocortizone and see what happened. Almost immediately her reactions went away but they have started the infusion again wanting to get as much in as possible.

I read a fellow SCCA mom's blog the other night, she talked about walking around a nearby neighborhood, looking at the houses and thinking about the people who reside there... how nice it must be to live a life where this doesn't exists, where everyday you don't walk your baby into a surgery, a treatment, an allergic reaction or a doctors office... where you get live how you choose and be all that your child needs. I miss the simple life that I use to lead and am finding all of the things that Georgia has to endure unbearable.