Hi everyone,
A lot of people have not liked my using the blog, so I will just post the same update on both now and you can choose which one you want to view it on:) No biggie.. So, we arrived at a bright and early 6am to Childrens and of course it took another hour and a half to get checked in, give Charley some oral sedation medication, and then get her IV done. She was great up until they held her down for her IV, it took a good ten to fifteen minutes to calm her down after that. She was ticked off everytime she looked at her IV splint. I think the hardest thing for these kids is being held down for procedures like that, it, of course has to be done but they hate it more than anything. Once the sedation kicked in she was still awake but groggy and every few minutes as we were watching Yo Gabba Gabba, she'd say "cup", and Jason and I would look at each other in terror fearing a temper tantrum was about to ensue. It's the ups and downs of these days that make them so hard, well that, and the 4-1/2 hours of sleep we got.
They took us up about 8ish to the cath lab, and within 10 seconds of shooting the sedative into her IV line she was practically comatose. I laid her down, kissed her and we left, she was asleep as far as I could tell. I think for Jason this is the worst part of his day, seeing her passed out, eyes still half open no movement whatsoever. He can't take it and if possible I think he would run out of the door, or not go in with me at all. I always tease him about it. We ate at Subway, and although I was starving for some reason my stomach was nervous as hell and I barely ate. Being back in the hospital for this, after a seven month absence makes me relive all of my emotions that are held there. I hate it, and Dr. L'ecuyer's fellow didn't make me feel much better. No offense to medical students but they suck and always worry me more than I should be, thank goodness for Dr. Turner who actually does Charlotte's catheterizations, he always eases my anxiety.
It never ceases to amaze me all of the emotions conjured up in that hospital, as if the minute I step back through those doors I'm transported back a year a half ago, living in the PICU, barely eating breakfast/lunch/dinner at the Subway downstairs, full of fear, uncertainty, and mourning my daughter who was still playfully smiling away at everyone she met, and I just feel so terrible for all of it. I went to the bathroom and watched a little girl come in the front entrance, scatters of hair, a hospital mask on her face. I'm assuming it was cancer and she was immune compromised but being there it just sends shivers down your spine how clueless we all are. Walking around bitching about our car, our job, miniscule things in comparison to what patients and their families go through. I thought I was getting less judgemental of humanity but lately I think I'm getting worse:)
We eventually went upstairs and as we were waiting the nurse passed us in the hallway and said she had just taken Charlotte down to post-op (our pager hadn't even gone off yet). She said she was a little feisty about going to sleep (which made us laugh out loud of course), Charlotte feisty NEVER, LOL.. Dr. Turner came out, I love Dr. Turner have I not told you this yet. He is great, and said all of her pressures were normal, she did great, it went perfectly, and she would still be a candidate for transplant "when" needed.
Downstairs we met our nurse, she instructed us briefly (as we are pro's at this now) on keeping Charlotte laying flat for a few hours to which again, we laughed out loud, but said we'd try our best. She slept for another hour, maybe more and literally woke up and was non-stop talking from that point on. I have video I will post of her just blabbing away. The nurses all came in to see her and talk to her, she is like a celebrity everywhere I take that child I swear. Shockingly and I am so proud of her she did in fact stay laying down for a few hours. We let her have her drink, we fed her, all while she laid there watching TV. She really was great, the post op is what I dread most, I'm sure having nothing to do with out last one where she was ticked off and refused to go back in her room, and then ripped her IV out. She got a little feisty after the nurse removed her IV and pressure dressing on her leg, she was fidgety and wobbly all while trying to put stuff on her bed where she wanted it but we survived and all in all it was a success. We kept trying to move her DVD player for her, or her blankets and she was getting so pissed off and frustrated it was kind of funny, when cardiology came down to give her the OK to leave she was only happy if I laid on the bed and she jumped on me.
She was wonderful and besides being exhausted everything went smoothly, up until about 5 o'clock when it was apparent that she had developed a fever. I wondered if it was coming because in the afternoon when we got home she was breathing heavy and I was panicked because we had skipped her meds due to the procedure. I didn't think she could start heart failure symptoms after missing one dose so once I calmed myself down I thought she had to be heading into a fever, and sure enough she was. They don't think it is related to her cath because Jake's been sick since Friday with a fever and it only makes sense that she was next. So that's that, monitoring her today keeping the tylenol flowing. Too bad she can't have a bath until Friday but we'll get manage.
One thing that is front and center on my mind today is how the fellow, and Dr. Turner, and the nurse all used the words "when she is transplanted", not "if she is transplanted". The word used to be "if", but without improvement this long it is now a matter of "when". This is stuck in my mind, with a lot of thoughts/emotions behind it. These last few months I have allowed myself to hope for a recovery of some kind, that this will just be a trying blip in our past someday. I was reminded yesterday still how fragile her life is, and how we are not out of harms way and never will be. UGH!
Thank you for your prayers and love,
Courtney
No comments:
Post a Comment