Day 1: Macy's Journey With the Rex Shunt

We left Indy and headed to Chicago yesterday.  I just kept delaying our departure.  It broke my heart to leave McKenna.  Literally, my heart hurt, I had this heavy ache in my chest.  I cried a few times at home, and then cried pretty much the whole way to Chicago.  There is a chance I might not see her for 2 weeks.  That is the longest I've ever gone without seeing that sweet child's face.  I'm not sure that I can do it.  We'll see.

The Ronald McDonald House didn't have a room for us, so we stayed in a hotel.  Thank you to Mamaw and Papaw for covering our stay!!!  The change has made things quite interesting.  Due to her gluten free diet, I always cook a meal the night before and we bring it with us for dinner the night before surgery.  Well the pork roast and potatoes was ready, and the hotel told us that they would plan on having a microwave in our room.  Well, we had a microwave, but the only place it would work properly was in the bathroom.  SO....we heated up our dinner in the hotel bathroom.  That sure is one for the books.  I even got a picture of Jeremy standing next to the microwave (and toilet) holding his fork, lol. 

We got up at 5:30 a.m. and headed to the hospital for surgery.  They did vitals and labs.  We met with the surgeon and the anesthesiologist, and then Macy headed back at 8:52 a.m.  The surgeon came out to talk to us at 11:52 a.m. so it took just about 3 hours.  He went in through her left side near her spleen and into her spleen.  He measured her portal pressures first to see what the starting point was.  With Macy being in portal hypertension for the last 3 years, her body created a shunt that came out of her spleen and emptied at another location in her body (as its attempt to reduce pressure).  So he placed a wedge in that unwanted shunt and watched how blood then started flowing into her liver properly.  Once they could see that the outcome was what they wanted, he closed off that shunt so that blood can no longer go that way instead of through the liver.  We want all of the blood that should be going through the liver to go that way for when Dr. Superina does the Rex on Wednesday so that her "new" portal vein stays open.  Once he closed off that splenetic shunt, he checked pressures again.  They are even higher now, which is to be suspected.   So she was admitted, and they are watching her closely by checking her hemoglobin and vitals.  There is a possibility that she might get to leave tomorrow and come back Wednesday morning, but no one has a straight answer. 

We were able to finally see her at about 12:15 p.m., and she was awake, talking, and asking for tomato basil soup!  She quickly had juice and ice chips, and then ordered some food.  She had a very nice gluten free meal...they have way more options than Riley!  We are up on the 20th floor now, and just relaxing.  We've already gone for a walk around the whole floor, and she's asking to head down to the floor that has a big game room and lots of activities.  They told her that she had to wait until her next hemoglobin check.   So we'll see how that looks and go from there.  Poor girl hates being hospitalized!  This pic below is following her surgery!  Yes, she is totally AMAZING!!!!

We called the Ronald McDonald House again, and they still do not have a room for us, so Jeremy and all of our belongings are spending another night at the hotel. Jeremy and I appreciate all of your prayers and kind words!  Seeing all of the comments and messages help us so much!  Keep the prayers coming!