The second alarm doesn't bring confusion but immediately brings knots to my stomach. It is time and I don't want to do this. Getting dressed, last minute packing, getting Rin ready are all emotional for me. I don't want to do this. We head out the door into a very cool morning. We ride in silence most of trip. Rin sleeps peacefully. I don't know why but the darkness, cold and fog seem so appropriate this morning. There is a battle raging in my mind and constant rambling.
I don't want to leave her. Yet, it will be nice to see her sit up straight. I can't believe she will bare another scar all because of the fight with Rett Syndrome. I used to think scars on guys were cool and mysterious and macho. Now I am sad that the sweet skin that I have watched grow will now be marred again. Stupid Rett Syndrome. She has the best surgeon. He is known for his ability in the OR. They better take care of her. I wish I could be with her. I wish could do this for her. I'm glad I brought extra socks. I think that these shoes might get old after 12 hours.
We pull into the parking deck and my stomach is crazy. I'm disgusted at myself when I go to put on lipstick. I'm about to send part of my heart into surgery and I stop for lipstick. E already has her in her chair strapped in and walking off. He is moving faster than me. That is unusual he is a slow and steady wins the race kinda guy. I have got to pull it together. Entering the hospital creates in me a huge sigh. Melancholy.
For 5:30 am the waiting room is packed with families and their little ones. Registration is quick and they warned me that it would be. We were told Spinal surgeries are first. Rin sleeps peacefully.
Back in triage we do vitals, answer a ton of questions, ask a ton of questions and meet with all of the people that will be her team in the OR. It starts, my eyes keep leaking. Hearing my husband pray over her brings peace. My partner, my friend speaks words of truth as he lifts up our sweet daughter to the great Physician. I can do this. I will live in His strength not my own.
I am thankful she wakes up enough to smile for us and reassure us that she is ok. She was scared last night when I prayed with her.
As we walk her down the the hallway to the OR I am scrambling to control something, anything. I become obsessed with the blanket we brought with us. "Should I take the blanket we brought? Can it go back with her? I'm just worried about her being cold." I know that the lady thought I was crazy. She comforts me by offering to bring it out to me. Then it was time to say our goodbye's. I didn't even know if I could make an audible sound. With all the strength I could muster and with a shaky voice I squeek out "I love you" and kiss her on the cheek. E's voice never waivers " I love you princess".
Now we wait.
1 hour later we receive our first update. She has been put to sleep, central line placed, intubated and positioned properly for the surgery. The nurse says it is all like the doctor wants it. She will call back in an hour.
2hours in and we get another
update. All is well. And now we wait again.
I paint my nails. I color in my coloring book (don't judge me) and I beg E, to no avail, to play Uno. More waiting.
3 hours: we receive another update. All instruments are in place. (A.k.a. Metal roads and screws) they will be another hour or hour and a half. Now we have E's parents here and Colby and Kathryn. We talk and I enlighten the Colby and Kathryn on old circa 1970 Saturday Night Live episodes. We have checked on the kids and they are all surviving. We wait.
By this point we are the only family still here from this morning. I have seen four different waves of patients coming in for surgery. We are all the same. They call out your last name from a door. And the parents are pointed to a phone on the wall to receive your update. Your lifeline to your child.
I get up and instead of pointing to a ringing phone we are told to go the conference room and the doctor will come see there.
It is over! Yahoo! After seeing the surgeon we are confirmed that this was the right decision for us. Waiting would have been very bad and a lot more complicating. We can see her in 3 hours.
For the first time all day I can finally take a deep breath. So thankful and ready to move to the next step. E's parents leave and we eventually go grab something to eat.
I can't tell you how beautiful that sounds. The lady behind the desk has a big booming voice that reminds me of my highschool cheerleading coach whose voice projecting was so loud and so strong it could penetrated concrete blocks and the lengths of basketball courts. No one could every say they didn't hear her and this lady is no different.
I grab my bag and then yell behind me to grab the other stuff but then I get so excited knowing that I am seconds away from seeing her. I drop my purse in the floor and blurting out that Colby will have to get it. E never rushes. I see through the door is her bed and she is there peeking out from underneath a blanket. Her eyes are swollen her lips are so full from being intubated. Again the tears start streaming down my cheeks. E finally appears and we start the transport to the PICU. I am asked to leave her but this is so temporary. Only minutes till we can be reunited.
Doctors, nurses, scrubs, monitors beeping, Rin sleeping, long coats, short coats, paperwork, orders, talking, mommy relaxing just a tad, tons of wires, IV lines, dried blood, trying to make her move, fielding developmental questions, alarms, draining tubes, trying to get her to wake up for just a seconds, stitches, rolling over on a schedule and general sensory overload. This is our home for the next 24 hours.
Thank you for all of the text and messages. We haven't been able to answer them all but we have read them.
I am blogging on my phone so I have no idea how this will look when posted or how many typos, punctuation issues are here. Plus I have been up since 3 so grace and mercy would be appreciated.