It was an early appointment at the children's hospital. We had to be there by 645am. Amazingly I was able to go to sleep around 1030pm last night, so the early morning wasn't terribly dreadful, not to mention I did not feel like daggers were stabbing my eyes, I hate that. We arrived and were moved right along, sadly, she is a familiar face to the OR and everyone is always tickled to see her. The short story, the removed old t tubes and put in new...different shaped t tubes. She described them to be shaped like the collars they put on cats and dogs to keep them from biting themselves...she stated that Lillian's right ear began bleeding out upon removal of the tube, which is highly unusual..(go figure, not MY daughter)...she had to afrin-ize her ear to stop the bleeding. She wondered if perhaps she pulled out a polyp or granulation tissue, bc bleeding should not have been an issue.
The interesting part of the day? Her post op nurse entered the room and got report from OR nurse and looked Lillian over (she was totally zonked, hello versed and fentanyl..Lillian, not the nurse..tee hee) she turned to me and said, I have a daughter with pierre robin syndrome. We talked quite a bit. Turns out, her daughter is now 20 and had very similar issues as Lillian. Her daughter didn't suffer the severity of Lillian's issues, but so much was a like it was crazy. It felt so good to talk to someone who had been through so much of a like journey and was seeming to be on the other side of it. Her daughter had a different chromosome anomaly, but much the same symptoms as Lil Bil. She kept telling me how much Lillian reminded her of her daughter. Her daughter has to work really hard in school but is in college and doing very well. She said her daughter did not speak until she was five years old and had a pharyngeal flap put in and came out of the OR talking...HELLOOO...TALKING.
I have to tell you, I have never lost hope for the life Lillian will lead, but I've certainly felt helpless. I sometimes feel like we are in a dark tunnel and today I saw a light and felt a small twinge of relief and a little bit of wow. I have "met" many SN mamas through the webiverse, but seeing and talking to a someone in person who not only has a SN baby, but has had a journey so similar to your own is so unbelievable... very hard to put into words. She was SO encouraging to talk to.
God is ALWAYS providing...sending the people you need when you need it...
Today was surreal to me. Praise God from whom ALL blessings flow.