wrappin it up

We have been home from the hospital for almost a month now and I just thought I would catch up on the whole adventure of Primary Children's.  When he was in the hospital back on April we kind of had a rough experience and since then I have been working with the Patient Relations Manager to help make our next hospital stay (let's face it it's just bound to happen) go more smoothly and less chaotic.  I will say that this last stay was much better.  The main project I've been working on with Theresa (the Patient Relations Manager) is an acute illness protocol for the SMA population.  We hope that it will help with the communication lines between Doctors, Parents, Nurses pretty much everyone involved with the care of the child.  We were able to implement our idea this last stay and we got a lot of positive feedback from both nurses and the physicians on Riley's team. There is still a long way to go but this is a big step in the right direction.  I am confident that this is the reason for a better experience this time around.  When we were first admitted I thought that we would only be there for a few days but by day 5 Riley was still struggling to get off his bipap. We started the vest a few days into the stay but it just wasn't enough. He was still plugging up with mucus and having oxygenation issues. After a pulmonary consult they added some albuterol and pulmozyme breathing treatments along with singular. After a couple more days despite his appearance he was still struggling to wean off his bipap. Riley only wears his bipap at night and it was hard to see him alert, happy, talking and playing and still needing his bipap. Because of this we had Dr. Swoboda's team come up and look at him. She reassured us that it was all related to the illness and he just needed to get over what ever he had. This made me feel a lot better. She also wants him to stay on the singular due to some possible reactive airway issues and hopefully keeping the singular on board will help with the inflammatory response to any further respiratory illnesses.  Riley had lots of fun visitors during his stay but his favorites were the cousins that came.  He just lit up when they came into the room. Courtney had to get right up with him to play with Elmo and Ernie

Garrett and Makayla came up too! 

The last hospital stay Riley got Physical therapy in the ICU but this time he got to get out of bed and go to the play room for PT! It was so nice to get out of that room. He LOVED playing with the cars.

So after 10 days we were ready to go! Dr. Swoboda wanted us to stay a couple more days to get some more intense treatments but we decided to go and just manage it at home.

As soon as we got home Riley really turned the corner.  I think he just wanted to get home.  He stayed home from school for the next week and then went back the following Monday. He has transitioned right back into school and has been doing great.  Let's hope that this is the last hospital stay for a while!