The day before in the lab Sadie and I ran into another girl, about age 10, with Down syndrome, dark hair and absolutely adorable, with her mother, who I learned later were Sarah and Donna.
We saw Sarah, Donna and her father in the waiting room before surgery and visited. Sadie recognized Sarah and sat next her for a bit. Then when they took us back to another waiting room, where the anesthesiologist and various other doctors visited with us we saw Sarah pass us again as they took her around to a separate waiting room. Sadie followed suite and ran around the corner and to Sarah's arms. The girls were absolutely drawn to each other.
Sadie has had the oral sedation medication before and it has just made her sleepy, yet she's always fought going to sleep, but this time she was on a high! She belly laughed and giggled all the way to the surgery doors, patting my face and laughing. I handed her over to the anesthesiologist and she giggled at him and was playing Helen Keller with his face as well. She had everyone in the waiting room air and the doctors and assistance very well entertained. It made it somewhat easier handing her over to them at the doors, but the short walk back to the surgical waiting area seemed very long.
The surgery was about 5 hours long. The OR nurse would come and report to be every hour or two. It took them over an hour just to get her IV lines started. Children' with DS aren't famous for good cooperative veins and neither is Sadie's gene pool. She inherited her mothers sappy veins.
It then took a couple hours for them to cut through all her scar tissue. I didn't realize how tedious this can be, being careful to not cause a bleeder, etc. She grows an extraordinary amount of scar tissue. I had expected this to be difficult, as well as the doctor was prepared for it as well. Remove the wires and break through the sternum, again.
Then came the part I hate the most of all. The heart and lung machine. Knowing a machine is pumping her blood for her and expanding her lungs was a very uncomfortable feeling for me, and then the big moment is in anticipation for when they come in and tell you the surgical procedure is finished and she is off the heart and lung machine and pumping and breathing on her own. What a relief.
The hours went by easier as I had my dad with me, my girlfriend Sandi and her two daughters Stacia and Katie, and Casie who kept me yacking, laughing and tried keeping my mind entertained. Stacie bought me a couple Cokes and fussed over me. Dad slept some, paced the halls a lot, and answered calls from my siblings.
When it was all done the surgeon came out and took dad and I into a conference room and told us the surgery was a success for what they went in to do. They removed the subaortic membrane and repaired the damage to the aortic valve. He told us that though subaortic membranes and thought to be congenital he didn't believe Sadie's was, but rather caused by a stitch from her first surgery, and that it is probable that this will regrow and will need removal in the future again as many times as possible. He told me they ligated the PDA (which I'm not sure why.. this was patched with her first surgery, as well as a patch/wall between the right and left ventricle, mitral valve and right artium).
He also said the tricuspid valve still had problems, that he could have purse stringed it, but then it would have constricted the already too small pulmonary valves, so he left that. He also explained that if the membrane regrows and they go back in when she's more adult size, around age 10-13, they may consider her for 2 heart valve replacements, which surprised me. I knew they don't consider DS patients for heart transplants and I thought the same went for valves, and so I asked him about this. He said valve replacements are considered case-by-case.
All this was a lot to take in and I'm still not sure I got it all straight in my head or even exactly the way he explained it to me. You'd think I'd understand the heart and how it functions, etc., by now. I should. I try. I remember getting an A for a drawing I did on the heart in health, but then that was for my art skills I'm sure and not my brains.
We then had to wait another 45 minutes or so after our visit with the surgeon to see her in NICU.
They kept Sadie in soft restraints. I had warned them how active she is and intolerant of Bandaids or anything on her and that she would pull out everything she could upon awakening. When she awoke she would jump as if startled and bolt straight up, as much as one can when hooked to so many things. She hated the vent tube and would moan, but they didn't remove it til later that night because she struggled breathing on her own for awhile. And thus began the countdown process at removing one tube or line at a time.
After removing the vent tube they offered Sadie clear liquids which she guzzled. Her lips were all puffy and looked like she had a lip job. They kept her sedated pretty much and on morphine for pain, but she would do her startling jumping up thing often and kept everyone on their toes. She could not be left unattended at ALL.
At shift change our nurse and I tried telling the new nurse coming on that she is very active and cannot be left unattended for even a second as she would bolt up and start grabbing at things. She bawlked at this and acted like she was cool and could handle anything.. hahahaha... When I returned after 8:00 the first thing she said to me was.. "YOU were right"!! and from then on one of us was always right next to her.
Dad and I had run down during the shift change and go a burger. Dad left earlier in the evening after we got back. His eyes were blood shot and he looked absolutely exhausted. Neither of us had slept the night before and the stress had taken it's toll on us both. I didn't dare look in the mirror. I got back to the hotel late, took my meds and crashed until the next morning, knowing that while she was in NICU was the only time I was going to get any rest at all.