UPDATE SATURDAY (11/17, 2pm) – Making some improvement

Good Saturday to everyone.  Julia had somewhat of a restless night but did get a few hours of good sleep after 5 this morning.  The surgeons and pulmonary folks came by this morning.  They removed the Bipap breathing machine mid-morning, and Julia is now breathing on her own with some oxygen assistance with the little nose thing (nasal cannula).  They are trying to see if she can tolerate this and are closely monitoring her lungs, breathing, etc.  Her blood gas levels are looking somewhat better.  We were able to get Julia out of bed and sitting up in a chair for the first time, and she tolerated it for almost one hour.  She has been battling nausea all day.  Right now she is resting.

We have been able to speak a few sentences with Julia for the first time, and we got an “I love you” from Julia.  Just cannot explain how good this feels to hear her voice.  She is still weak, coughs quite a bit and voice is raspy but as the day passes we expect her to get a little stronger.  Focus now is to get her moving a little more, keep her coughing to clear her lungs, keep monitoring respiratory functions and continue healing in the chest tube area where they deflated her right lung.  The big thing is getting her lungs stronger and clearer, and until Julia gets to that point, we will be in ICU.  Julia did tell us this morning that she just wants to go home, and we want to get her there soon.

She tells us she is hurting, mostly in her back in the surgery site.  She is able to pump her own pain medication with what they call a PCA – a little device she holds in her hand that has a small button she presses to release some pain medicine.  We tell Julia it is her “happy medicine.”  Julia is not able to drink or eat yet.  Until they get the respiratory where they want it, they do not want her to have any drink or food.

Today we will enjoy some nice quiet time and maybe a little conversation with Julia if she is up to it.  Julia will get to spend some time with her sister and brothers (maybe Nicholas can sneak into ICU and get a peek of Julia) and Grandparents Brown.  Yiayia Stathopoulos is coming here tomorrow.  Yiayia’s ten phone calls each day telling Dad “pray to the God” are pushing him to the edge – not really.

Dad tried to sing “you are my sunshine” to Julia and after about 5 seconds Julia gave clear indication that singing is not on today’s agenda.  Maybe tonight or tomorrow.  We are happy to see Julia’s improvement and want to see it continue in a positive direction.

Julia hopes one day soon to see her “twin” Karlie who lives in Ohio.  Karlie like Julia was born with Freeman Sheldon Syndrome and they met 10 years ago in Philadelphia during a Freeman Sheldon family support group gathering.  Julia and Karlie could pass for twins.  There just aren’t many children in the US with Freeman Sheldon and so Julia and Karlie need to share their adversity and challenges and how they have overcome.  We hope to get them together next year after winter passes.  Karlie had her scoliosis surgery during fall of last year.  Karlie, thank you for your post message to Julia.  It will mean so much to her and we will be sure to tell her.

We will update Julia’s Journal again this evening.  Thank you.

Harry & Regina