Things Remain The Same…

Except for a couple of crying fits, Rudy has spent the ENTIRE day sleeping.  He was pretty worn out by yesterday so I’m glad he could rest.  He is still tolerating the little bit of formula he is getting through a feeding tube so they will probably start giving him a little more tomorrow.  They are also (very slowly) decreasing his vent support so that will continue as long as he is stable.  The doctor that does the lymphangiograms was finally contacted directly and is eager to do that for Rudy…possibly tomorrow but, most likely, Thursday.  The team assures me that it is okay for us not to be here as Rudy will be accompanied by a doctor, nurse and RT for the entire test so I will go home as planned tomorrow morning.  Dr. Brian feels the Pleurodesis procedure will occur  possibly on Friday depending on what the lymphangiogram tells us…this will be good timing as Rolf and I will be back on Friday.  So, we sit and wait for another test result praying for definitive information.  Both Rolf and I are so grateful for the lengths to which the doctors here are going on Rudy’s behalf…Dr. Dan was on the phone talking with colleagues back in Boston, etc looking for answers regarding Rudy’s condition, Dr. Mary spent a good bit of her time today tracking down information about the lymphangiogram as well as alternative tests they might consider, Drs. Robert and Rick and Brian are on top of all the details and Dr. Gary, once again, stopped in this evening to check on us so we remain in great hands and everso thankful.  I keep thinking over and over if Rudy is giving all the really smart people around here a hard time then Rolf and I are in for a challenge when we get him home!  Ha Ha  He’ll keep us on our toes for sure…

For those of you who have been following, along with us, the life story of Katie Manning you might be interested in checking out www.kissesfromkatie.org -a brand new website launched by her parents Alan and Vickie to help support children and their families in the midst of prolonged hospital stays.  It’s a wonderful new organization in honor of their precious daughter.   We sure appreciate the encouragement they have been to us and look forward to supporting their efforts as their work through Kisses From Katie unfolds. 

Below are some pics of me, Max and Olivia from the weekend…we went to our neighbor’s house to decorate a gingerbread house.  Thanks Jannele!  It sure was refreshing to squeeze in some holiday fun in the midst of everything else going on!