We have tried to make things as calm as possible the last couple of days and move him minimally as that is something that sets him off.  We have allowed him to push himself to whatever extent he can or feels comfortable when he is doing “floor time” which is really just crib free time, although today he did start spending some time on his mat.  We hope that he starts to forget all the hard that took place this past week and gets back into the routine he was in.  He has about a month before he goes back for his follow up and they determine when his next surgery will be.  There is quite a bit of coordination that will need to take place between now and then.  While we were at the hospital we had to get urology and general surgery on the same page with cardiac surgery in order to limit the amount of procedures that Nolan would be put under anesthesia for.  In typical TCH fashion they worked hard before we left to make sure we were consulted by all the departments prior to his discharge.  So now we will have a day full of appointments at the end of May and coordinate when he will go to surgery in Legacy tower (the cardiac center) since he requires a specific type of anesthesia.  

   One thing we did learn this past visit is that when you are a cardiac patient but are going into the hospital for something non-heart related the experience is a little different.  We were definitely spoiled by the cardiac teams and how well everything was coordinated.  There were a few communication gaps that happened during this last stay since there was a little confusion over exactly who Nolan was assigned to for care.  The general surgery team defaulted to the cardiac team while he was in CICU but once he was moved to the step down unit he was assigned to the general surgery team.  Well, since we were still in Legacy tower we were handed off to the cardiology team initially but then pushed back to the general surgery team.  We were very used to being seen daily in rounds to ask questions and understand what the daily plan was for Nolan’s care.  This didn’t happen the same way since we were under the care of Gen surgery and they are housed in a different wing of the hospital.  So we were in the dark a bit on what needed to take place in order for Nolan to start moving towards discharge.  This led to a bit of frustration and some hard conversations with the different teams on the lack of communication.  I will say this, once word got out that we were not happy and were unsure of what steps were being taken to move Nolan closer to going home ALL the different departments and TCH leadership came by to apologize and ensure things got corrected.  It sounded like this specific situation was not very common and uncovered a gap in their system that they would be working on.  It was nice to have so many friends in the cardiac teams that stopped by just to say hi and check on us and Nolan.  This allowed us to describe some of what we were experiencing and all of them jumped at the opportunity to help us get clarity.  Specifically Angelea on the Cardiac surgery team stepped in and made calls to make sure we got answers to all of our questions.  She’s pretty amazing and we also just enjoy her….It helps she has a sweet Golden of her own (Basil).  

    Another thing that was pretty neat and sobering all at the same time was the program that Nolan was enrolled in during this visit.  The child life team gave us a “Prescription Sheet” for a program called Beads of Courage.  They have a cardiac program that awards a specific bead type for all kinds of things that go on while kids are in the hospital.  There are a ton of categories like: Pokes, Echocardiograms, Open Heart Surgeries, ECMO, General surgery, imaging, blood transfusion and many more.  We sat down and went through all of Nolan’s notes, test results, hospital stays, etc.  By the time we were up to date with his most recent stay he had been awarded well over 400 beads with many unique beads for feats of courage and admission/discharge from his surgeries.  It will be a fun visual representation of everything he has overcome during this first stage of his life.  It was really hard to fill out the form and just take a count of how many times this little guy has been poked and prodded and cut open and messed with.  I am constantly amazed by his happy (most of the time) demeanor and ability to quickly move on from hard thing after hard thing.  We are so proud of this little man and the light he brings into not just our lives but all of the people that he spends time with.  He has made so many “friends” at the hospital that even though we absolutely HATE having to go there, there is a small part of it that feels like home with the parade of people just stopping by to check on him and us.  People that have no reason to stop by anymore but to spend a few minutes hugging on us.  An example of this is when we were getting ready to leave on Friday, Bonnie had gone down to grab a few drinks for the road and the wonderful ladies that make coffee down there called to her from across the room and asked about Nolan.  When Bonnie told them we were leaving they told her she needed a coffee for the road.  Bonnie declined but they insisted that I would want one, knew my drink order and gave her one on the house with some kind words for Nolan and our trip home.  I can’t say it enough, but TCH provides such amazing care from the top to bottom.  So many sweet people that genuinely care for us.  We can’t thank them enough for the awesome care for Nolan and just giving him an opportunity to live the best life he can.