The last time I intentionally went somewhere with this much snow I was excited for the fresh powder and ready to hit the mountain. This time all the Boston snow is not so exciting. My flight got cancelled last week to to the blizzard but fortunately Dr. Foker was still able to make it in for Lydia’s surgery on Friday.
She had a great week last week and was playful and off the vent. Friday she went in for another surgery (#16 I believe) This time they moved the spit fistula from being just beneath her skin and having a pin hole opening for secretions to inside her chest so that it could heal and be ready to be put on the traction sutures. While we are excited to be officially done with the spit fistula (or fancier name of cervical esophagostomy) we still have a road ahead of us so it’s not quite yet time to break out the champagne. They also found a large cyst in the area where her esophagus had once been and cleaned that out. Dr. Jennings believes it possibly had grown from esophageal tissue left behind and was relieved it was not a tumor or an aneurysm. Nothing like a reminder of when you think things are bad, they can possibly get worse!
I was able to get a cheap priceline flight out this Sunday and was very excited to spend a few days with her this week before her next surgery this Thursday. The plan was for her to be extubated on Sunday and spend the week playing with Mommy and trying on some new outfits that Ava had outgrown. Once again, I should learn not to make plans for Lydia.. I got here Sunday thinking what a lucky day I was having since I got an earlier flight from Newark and avoided a 3 hr layover and Lydia would be tube free. Unfortunately she failed the extubation and after an hour of working too hard to breathe, they had to put the tube back in. I think her nurse was almost as bummed as me.
Other weird things about Lydia this time around – her left pupil is larger than the other and her left eye droops. A condition called Horner’s syndrome that is caused by damage to the sympathetic nervous system from her last surgery and will hopefully go away over time. No big concerns about neurologic problems just asymmetrical pupils to go along with her lazy eye and flat head. She also has no hair. Just a bit of downy peach fuzz like she had back in April. We’re back to glued on hair bows since there’s no hair to clip one in. Not sure what this is about but maybe the change back from formula to TPN and Omegaven. I’ll have to ask if anyone has any other theories. I am happy to report that she does have her front teeth in and not just her fangs anymore. At least I can rest assured she is not a vampire baby anymore.
Yesterday I was able to hold her although it is much more complicated with the extra gear, but I got a smile out of her and she was pretty playful. Even on drugs, the girl has a new found love of leg kicking. I think she’ll have my clogging skills and hopefully her father’s rhythm. I was able to have lunch with a few other EA moms and it’s nice to have a mini support group out here. Dinner time she threw me for yet another surprise as I get a call from the cafeteria that she had extubated herself after the nice bath and spa treatment I had just given her and they were yet again reintubating her. They wanted to warn me so I wouldn’t panic too much when I came back up stairs to find a mass of people in her room.
Hopefully the rest of the week will be calm until her surgery Thursday. It’s again snowing but it shouldn’t be another Nor’Eastern blizzard like last week. I head back to KC Friday and will be excited to see all the new things Wyatt and Ava have learned at Grandma’s. I think we can officially say we have a walker now as Wyatt confidently can take several steps at once.
Thanks for all the love and prayers for our Boston girl!
- Posted in: Uncategorized