I didnt want anymore surgeries for you. I just wanted you home. Happy, healthy and most importantly WHOLE. No amount of research or discussions can help or take away from the emotions you feel in entrusting your childs life to someone else. I was lucky that we had a good support system and that Dr Ross is as amazing & skilled as he is. We had just got you home for the second time in early April when our phone rang and it was Pat Hebden, the cardiac surgery coordinator calling with the dreaded date for your Glenn. May 8th ~ UGH. We were not fortunate enough to be able to stay at RMH again becuz it was full and so we were booked into the Travelodge.
I remember taking many photos of you with your sleeper open and several family members kept commenting on it. I did it because it was a way to preserve that at one time your tiny tummy was unmarred with scars, it was a way for me to feel like for a moment I could think of you as perfct & whole though internally it is a whole other ball game and that was never forgotten.
The date is Monday, May 7th. Intake clinic day where you are examined & poked at from head to toe. Your disposition to most of it is amazing. You smile, coo and with your crazy hair get alot of smiles and laughs from the nurses & other people in clinic. When anesthesia comes to talk to me I am holding you listening to him go over the IV vs mask stuff, I start to pass out, he grabs you and saves you from falling. I was ok, just very overcome with the reality that tommorow they would really be cutting your little chest open for the first time. I sat awake all that night watching your lil chest rise and fall unscarred. I held you for hours and mostly I prayed. You had oovercome so much in just over 5 months and I just wanted it to be over.
Morning came way too soon. I gave you your last steribath and headed to the hospital with Mike. It was his turn to hold you and he did for the 4 hrs until they took us to the theatre. Then I held you and sat with you while they did the IV line. IV's are never easy on you and this was no exception, it took 5 tries before they got it in. I had tears welling in my eyes as they laid you on the table. I kissed your head like that first surgery day and held your tiny hand. In mere econds you were out and a nurse escorted me to the door. I was kinda drug away because I didnt want to go. The nurse reassured me that you would be fine, I was kinda annoyed that she would so brazenly give me that guarantee. So to the fish tank we went to wait, and wait and wait. Finally when I was truly starting to freak out Dr Ross came by and said you went thru with flying colors and you'd be able to be seen within the hour.
When I saw you my heart hurt. You looked so fragile and had this huge bandage down your tummy. I put my hand on your head and you opened your eyes slightly. I was reassured when a while later while talking to you, you reached up and squeezed my hand. You were in PICU for 4 days, then in ICE observation for 2, they put you on ward and becuz they are always short of beds after 2 days there they ambulanced you to ACH where you spent 12 more days before coming home. I thought FINALLY we'd catch a break and except for checkups avoid any more hospital stays until your fontan which they slated for when you were 2ish. You however had different ideas and we began a new plethra of hospital stays for something complete different...
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