When I sit down to write a journal entry I try to capture where we are in the moment and if I can, I like to find humor in the moments. Unfortunately, I can't find any humor in the last few days.
I expected my next journal entry would have pictures of our long-awaited family vacation to celebrate Tom's parent's 50 year anniversary and I would have pictures of the kids doing fun things with their cousins while we were at Deer Valley. Instead we got a one-way (so far) trip to Pittsburgh Children's Hospital.
With her doctor's permission, we headed to Maryland on Thursday, which was a vacation nightmare in and of itself. Long story short, after being delayed over three hours because of bad weather in Dallas we got to Maryland after 1 AM to find that our luggage didn't make it. So Mommy sob sob sobs and we get to bed around 3:30 AM. The next day (Friday) we get to take an hour and a half (one-way) drive to the airport to retrieve the luggage and finally our vacation will start. Family arrives. Hugs, kisses, cousins playing and we head to Pennsylvania Friday late afternoon and arrive around 7:00 PM. We had a lovely anniversary party and the kids got to play. We put them to bed around 10:30 at night and Rachael felt great. She was having a sleepover in her cousins cabin and life was good.
Sometime between 2 and 3 AM my sister and brother-in-law brought a crying Rachael to our cabin. She was in pain. I took her temperature and it was normal and gave her some tylenol with codeine. At 5:30 AM I took her temperature again and it was going up so I told Tom that I needed to take her to a hospital. I went to the Myersdale Hospital which is a small facility with an emergency room and they told me she needed to be transferred to Pittsburgh Children's because they simply did not have the facilities to handle her care.
Five hours after getting to the Myersdale Hospital we started our three hour ambulance drive to Pittsburgh. After seven hours in the ER, we finally got settled in a room.
Yesterday was the most I have broken down yet. Like Amanda said, Rachael was devastated. She begged me to leave. Over and over. The things she endured would have been barbaric if they were not (in most cases) necessary. Three times, with her screaming like a caged animal to stop they tried to get an IV in her to no avail. She threw up three times. She was feverish and in pain. She was beyond starving and couldn't eat. It was horrible and all day she cried, "Do we have to stay here today? Why do we have to do this today? I'm missing all my friends. Why does this always happen to me?" Oh, and when they transfered her from her ER bed to her regular hospital bed the orderly... or whoever he was... didn't unhook her IV line or make sure it was long enough and they ripped a couple of the stitches out of her catheter. I was INFURIATED. I did not scream or yell or swear at the guy but he knew under no uncertain conditions that I was beyond angry. So on top of all the other crap she had to have someone from the IV team come down and change her dressing while it's sore and tender and has RIPPED STITCHES HANGING FROM HER SKIN. The kicker is that she had been sleeping when it happened. How's that for a wake up. The woman who changed her dressing was an angel. I don't mean she had a sweet personality (though she did). I mean she was heaven sent from God above and if it wasn't idolotrous I would consider worshipping her. She took off the adhesive from Rachael's dressing without receiving even one "Ouch!" from the child. That was the first true miracle of the day.
Anyway, it's all long and irritating but we know she has a pocket of fluid where the drain is going in. They know this because they did an ultrasound on the area which was pure hell. She was in so much pain and just screaming. If she had anything in her stomach she would have vomitted from the pain. That's when I decided that they will NOT take that drain out unless she is sedated. Period. I will not sign the consent.
What they can't decide is how to get the fluid out. They keep hoping the drain will do it's job and they won't have to remove it surgically. The problem here is that it isn't their surgical site so they want to be very conservative about opening it up. In the meantime, Rachael went almost 48 hours without food before they finally decided that they would officially "wait and see" until morning and we could feed her.
I want to say that she has recieved excellent nursing care here. They have been sensitive to her sleeping and very gentle with her. I know her doctor's are trying to do what is best and though the timing is getting frustrating I do believe she is in good hands here. We know she has a Staph infection but so far it does not look like it's in the blood. She is receiving IV antibiotics every six hours and her fever finally broke today.
I don't know what tomorrow holds. I suspect more surgery which means we will likely be here another overnight. The airlines were completely unwilling to bend the rules about non-refundable tickets so we will have to buy two more plane tickets to return home. My brother is here so I have a ride back to Maryland and some much needed support (which is why I can be here updating).
I am glad we have the care we have. I am glad we live today and not 100 years ago when my child would have died. I am glad I have a boss that is understanding and gives me all the time I need. I am glad we have insurance. I am tired of being glad for things that come as a result of something that royally sucks.
I am having a hard time praying lately. I don't understand.
17 hours ago