All of our ducks fell out of our row…

We  went down to the OR around 1:30 this afternoon.  The surgeon who pulled Lucy’s infected line and placed Lucy’s temporary femoral line was the infamous Dr. K, who has a reputation for being an amazing surgeon with a great bedside manor.  He also happened to be the one to tell me that there is no way he is going to place a more permanent central line in Lucy on Friday, but he would put her on his schedule for Monday afternoon.  What!?!   He thought Dr. R was going to tell me this, apparently something got lost in translation as I did not get this message  yesterday when I asked Dr. R about a possible discharge on Friday.  Dr. R told me that if I want to go to the beach I should go with him to Haiti this weekend…umm no thank you, I  have a different beach in mind.  Dr. K’s reasoning behind not placing a line in Lucy until Monday is that the risk of reinfection is too great, if we place a new line too soon we run the risk of the bacteria sticking to the new line and then we are right back where we started. 

To add insult to injury while Lucy was in the OR there was an urgent need for an isolation room as the hospital is full and they need to find places to put patients.   Long story short… Lucy and I lost our private room as she is technically not on isolation, but is severely immune compromised and can not be around other “sick” kids.  They moved us out of our room while we were waiting for Lucy to come out of the OR.  The nurses on our floor were mortified that the head nursing supervisor made this decision and have been very apologetic and sympathetic to us.  They placed Lucy in a room with a child who is of no risk to Lucy’s health and are going to work at finding her a private room just as soon as one becomes available.  We work so hard to protect our girl from germs because we have been told that we have to…oh the irony.   

As for Lucy’s procedure, her old line was removed without any problems; however, her femoral line did not go in as easily.  Dr. K  came out of the OR telling us that Lucy is “a pain to try and put a line into”.  Which confirmed to him even more that we need to try and preserve every line that we put in our girl.  He apologized to us for the mess he made on her legs, two lines broke and multiple attempts were made before he was successfully able to place a line.  Lucy woke from anesthesia  easily and was less grumpy than usual, a bright side to our day.  She even let me rock her for a few minutes before asking to lay down in her bed.

When we came back upstairs we learned that another mito buddy was admitted on the unit.  Three of Dr. R’s mito kids are on the floor, all three of them are affectionately referred to as the three musketeers down in urology, they are calling them the three amigos up here on the floor.  If we have to be here it is nice to have the company of others who know how it feels to be living with mito… even though I would never wish this disease on anyone.