the hotel on the hill

Monday Steve, Hank, and I will be heading for a vacation at Primary Children’s Hospital.  We anticipate to stay about a week and hope to be home earlier if possible. 

But first, look at this letter!  Hank was the face of the year end fundraiser for The American Heart Association!  These adorable letters were sent out all over the country.  Super cool!  His cute face is here too! 

Hank had his monthly appointment with his cardiac team this week and they felt it was in his best interest to go there.  Unfortunately, after calorie packing Hank for more than a month my kid gained 0.2 kg, which is practically nothing.  He is still a shrimp.  The major problem with this is we are unsure why he won’t grow.  Is his heart so sick it won’t allow it?  Is his development issues causing major nutritional issues?  These are the questions the doctors hope to find answers to this upcoming week. 

The plan is to check in on Monday and get a peripheral IV line which will eventually upgrade to a central line.  Hank will be started on milrinone, a drug that will improve his heart function.  He will also start on tube feedings with a long term goal of continuing those at home.  Once they see how Hank does on these interventions, we are hoping to have a longer-term definitive plan for our kiddo. 

Good news though!  While we are there, Hank will hopefully get tubes in his ears.  His ENT has agreed to do them bedside at the same time that he will be getting his central IV line.  Hooray!!

Don’t worry about Drew.  He will be spending the week with Grandma and Grandpa and keeping up with his normal routine.  We will miss him!!

Wish us luck!!