Three Little Birds

Story of 3 little birds and one who soared above us all.

updates

Lydia moved back to her old home in the PICU last Sunday. She has been stable from a cardiac and respiratory standpoint since her last surgery. She actually had a central shunt placed from her aorta to her pulmonary artery instead of the original BT shunt like they had thought. Nice to get clarification days later.

Boston did give us a little scare on Monday as I got a call from the english as second language EEG tech to perform an electroencephalogram that the neurologist had recommended. Of course this was the first of any news I had heard and didn’t even know there were any neurology concerns. I spoke to one of the intensivists who said there had been concerns about involuntary twitching in her hands since coming off of the paralytic and they wanted to rule out that she was having seizures. Fortunately, the EEG was normal and they still think since she was on the vecuronium for so long to keep her paralyzed that it is taking awhile to come out of her system. The nurses say she is gaining more purposeful control and has been having a little more awake time. With the addition of the neurology department, we’ve just about hit every pediatric specialty department possible. Hope I am not jinxing us by saying that!

We still don’t know when the next surgery will be for her esophagus. I believe Dr. Foker will be back in town next week so she may have something done next week. My hope is we can get the esophagus together soon and bring her back to KC to recover and wean off all the drugs. This has been such a long journey and we never dreamed what a nightmare the esophagus would put us through. I met a family today whose little girl had the gastric pull-up and is home and doing well as a pretty normal little 2 year old. I think if I had known how long she would’ve been in Boston, we would have kept her in KC. I still have hopes we can get her to have a normal functioning esophagus and have her home, but that goal just seems farther and farther away every month. I think I need spring to get here soon and brighten my mood.

Ava has pretty much fully recovered from her surgery. She is happy to report she is on a soft food diet now and is much happier. No more elbow restraints either, although they did keep her from pulling off her hair bows. She’s already making new sounds like D’s B’s kissing sounds that she couldn’t make with the open palate. Clay is now Dada instead of the nasally NhaNha. Hopefully she won’t need too much speech therapy and will never know she ever had a cleft.


I may have arm restraints but I can still enjoy my chocolate pudding.

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