12/29 - Getting my hopes up :)

The past few days have been a whirl wind of ups and downs. Last time I posted I said the chest tube output from the chylothorax had improved, but was basically plateauing around 20ML per day.  Our surgeon came back from his week long break yesterday and said we should take one last shot before taking more invasive action to cure the chylothrax. He clamped his chest tube and removed the suction to see if any more fluid would accumulate once the pressure inside of his chest stabilized. Leo had an x-ray this morning and the x-ray was CLEAR with maybe a little fluid. Both the surgeon and neonatologist seem optimistic that stable pressure and a small amount of fluid will help the scar tissue heal completely so they decided to remove the chest tube completely. He will have another x-ray early tomorrow morning. We are praying no additional fluid accumulates. If this works, they are talking about us going home within days!!!!

Over the past few days, Leo was becoming increasingly agitated. Yesterday the Tylenol they had been giving him was no longer helping and he was inconsolable so they gave him a dose of Ativan around 11am. Ativan is a type of a relaxer designed to help him calm down. I hate to see him get more medication but it did help him finally calm down. He must have needed some sleep as he ended up sleeping through the rest of the day and night. It was really good to finally see him peaceful. So far today has been great. He has been either alert and happy or resting quietly.

An extra special gift for me today is that Leo now only has one cord attached to him and it is for the monitor we will take home with us. I can now pick him up and put him back whenever I would like. Today I walked around the room with him and we bounced and rocked to his music. So Special! 

Since it is the end of the month, today also brought a new neonatologist. We had this doctor before for weekend and holiday duty. I sometimes have a hard time understanding him and his bedside manner could be better, but we think he is a good doctor. He diagnosed the chylothorax the first time around when no one could figure out while Leo's lung was deflated. Overall, it is challenging to have a new doctor when we are so close to going home, but at least we are familiar with him.

Big Sis Sammie came for another visit yesterday :). She kneeled on the tall chair next to Leo's bed and pointed out each of his body parts and again reminded us that we must be gentle. Leo also had a special visit from the whole Ory clan. After hanging out at the hospital for a bit, we took the kids to see the Festival of Lights (which was impressive) and then we ate supper inside of the Bass Pro Shop. It was a fun night! I hope Leo can start doing stuff like this with us soon.

Today I felt a small sense of panic that Leo might actually be coming home! Ter was his normal helpful self and immediately started taking down Christmas decorations when he got home from the hospital. Our living room cannot handle Leo and Christmas :).  I started doing my part by taking over Leo's care at the hospital.  Tonight I put his eye lube (seriously that is what they call it) in for the first time, cleaned and dressed his g-tube, administered his feedings and gave him his medicine.  Sammie did her part by opening all of Leo's Christmas gifts.  We were originally going to save them until he got home, but then realized he may have clothes in there he could be wearing since he is again wearing clothes at the hospital. Sammie said "Weo Share" whenever she saw an appealing gift (including several books and two cuddly lions).  We said sure Leo would love to share with his big sister.