April 19

So it just turned out to be another day.  For almost 2 months we have built up this day in our minds as the pinnacle of the spring.  NOPE!  We knew we would have no immediate answers, that we wouldn't know what was coming next and that it was just another test.  I began to realize a few days ago that it was not going to be cathartic.  I still feel in limbo, waiting for the other shoe to fall, for someone to call me and tell me that my baby is going to have more surgery or a catherization or possibly both.  I had a hard time planning things that would happen after the 19th.  I couldn't commit to do things, Easter, a wedding coming up in May, etc.  I also felt I had to get everything done for work, Grace and life in general before the 19th.  I failed miserably in that aspect.  I still have a ton of stuff to complete and Grace is going to be working hers buns off getting ready for her egg drop at school and getting her homework done.

We went in for a cardiac MRI that was suggested at the end of February/ begining of March so that the doctors could get a better look at the peripheral pulmonary arteries (which to you and me is the arteries that take the blood from the heart to the lungs to get the oxygen).  Her stenosis (tightening)  in these areteries is after the valve and was showing increased gradients well above what is considered normal or healthy on her echo.  Lily has also had a run of sinus infections/colds/ general snottiness since last October.  She has been on 5 different antibiotics since Jan.  The last one being for the last 5 weeks.  So her ENT ordered a CT of the maxiofacial sinuses to occur immediately following the MRI.  She has to be sedated for both so the easiest thing to do was do both at the same time, or one right after the other.  This meant one sedation, one recovery, two machines and only one stressful day for Mommy and Daddy.

We ordered a personal hospital gown from our friends at Emmy's Got Style with a matching bow.  They are a not for profit group that is committed to making patients feel beautiful while they spend time at the hospital, developed for the owners daughter with chronic health issues.  The gown was beautiful and had lots of pink as we requested, since it seems to be our girls favorite color.  Unfortunately the hospital was less than cooperative for letting her wear it.  We did put it on, but by the time the nurses who were prepping Lily for the procedure came in, we were changing her.  Everyone seems to blame everyone else, but I think it all ties down to the fact that we all get so stuck in routines and procedures that we forget the comfort of the patients and their parents.  They made us put a gown that tied on her with the ties in front.  By the time the procedures were complete, Lily had on a completely different gown on, adult sized and not tied, just draped over her with her arms through the holes.  We did get the bow on her in the recovery area, where she pepped up and took everyones attention for a while.

So we got to the hospital around 6:15 for check-in/registration.  Lily then decided to walk from the registration area to radiology.  She then quickly found the toys and wanted to play but no we had to be ushered back to a colorless/toyless room.  Once there she was weighed and measured, we were asked if she had a physical within the last 30 days?!?!?  Um, no, she did go for her 30 month appointment and has been to the ENT within the last 6 weeks.  No one said she needed a physical.  We had seen her cardiologist within 8 weeks and it took the cardiology department six weeks to get us on the schedule.  So, we never fully understood what that was about, just more to add to our worry plate.  Then we changed her out of her pajamas into our gown and let her watch a show while we waited.  Then we met the second nurse of the morning who made us switch the gown and then the anesthesiologist.  We were asked why she was having an MRI and not a catherization because according to the anesthesiologist her file looked like she needs a cath.  Um, the doctors here at Sibley Heart Center DECIDED she should have the MRI to determine what she needed, surgery, cath, nothing...  We were not so impressed with the anesthesiologist, she was nice enough, took good care of Lily but expressed her own opinion WAY TOO MUCH.  We then had to ride and elevator and go down to where the actual MRI is.  They are doing some updating to the hospital and the waiting and prep area for the MRI is under construction so they are borrowing rooms in radiology right now.  We were taken to another prep area, where we got to talk to Dr. Parks.  He is GREAT.  He explained everything to us and why the MRI not the catherization was what was decided.  It seems, that they are trying to reduce unneccesary radiation where possible.  The MRI is the least invasive but most telling procedure they have.  If a catherization is necessary a detailed MRI can tell the doctor where to go and what to do when they get there.  On the same note if a surgery is preferred to correct a problem, then you haven't exposed the patient to unneccessary radiation and other complications connected to a cath.  Everything is digitized on the MRI and 3D models can be made, it is amazing what all they can do.  Lily was given versaid to relax, which she did and got loopy too.  She was smiling and loving and cuddly and giggly and went easily to the nurse when it was time.

Tom and I then went to find breakfast, it was about 8:20.  We then had until around 10:00 to do nothing but read, sleep and worry.  At 10:00 they came and got us and took us with her on another elevator ride, her being asleep on a gourney to the catherization lab.  The anesthesiologist works the catherization lab after all cardiac MRI's are done.  By bringing cardiac MRI patients up to the cath lab, she can check on her patients as they recover and wake up.  The nurses in the Catherization lab are wonderful.  Lily had a nurse that she had 2 years ago in the CICU and step down unit.  He was very attentive and removed all those pesky wires, sticky things and IV lines whenever Lily asked.  It took Lily 30 minutes to wake up enough for the nurses to remove the tube in her throat that was placed to secure her breathing passage.  Then we got to be in the room with her as she drank juice, watched shows and complained about being "ticky"  which is sticky due to the EKG lines and iv tape.  She ended up enjoying 2 juice boxes and a banana before we were sent on our way home with a grilled cheese sandwich.  Half the sandwich was gone before we even hit the highway home.

We were all glad to get home about 7 hours after we first left at 5:15am.  We ate lunch and had a quiet afternoon of playing and eating.  We were all a little tired(mommy was really tired but stupidly stayed up until 10:00)  and tried to go to bed at a normal time.  Lily was up at 6:45 this morning ready to go, so Life goes on and once again I feel like I am playing catch-up.