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!

Wish Anniversary

Happy One Year Wish Granting Anniversary Riley!(official date was August 30th but I got side tracked with the hospital stuff) A year ago Riley was granted the most amazing gift! To all of those who make these wishes possible THANK YOU! Here is a little video that we played at his wish party before we left. I could watch this video all day long. Riley you are an inspiration to all!

We're Back

In the hospital that is! Last Friday night Riley spiked a fever and was pretty miserable all day Saturday.  We had a family reunion Saturday night that we had been planning on for months and were sad that we were going to miss it.  After some Tylenol and a little nap he seemed a little better so we decided to go to the reunion for a little bit.  On the way home we made a stop at the insta care to just do a quick check over.  His ears were fine and they did a urine culture and that was negative. So we went home hoping that it would just pass over.  Riley's was going to start school on Tuesday and we were worried he wasn't going to make it. By Monday he was looking better so we got him up and packed him on the bus Tuesday morning.  When I got home from work Wednesday morning I walked in to Marc doing cough treatments with Riley never a good sign. He told me he had been up all night coughing and suctioning. We kept trying to get Riley to cough up the secretions but they started to get stuck and he plugged off and started to turn blue! I yelled at Marc to call 911 and I kept trying to cough and suction, cough and suction.  Luckily the fire station is just up the street so they were there with in minutes. We were able to suction him out and his sats came back up.  They took him into the hospital so they could keep an eye on him. The thing about Riley is that there is no middle ground. 
He goes from looking like this

To This in just a matter of minutes

While we were in the ER he was requiring cough assist about every 2 hours but really actually looked pretty good.  He was talking and laughing. If it wasn't for the frequent coughing I would really have just taken him home.  Well, good thing I didn't. They wanted to just take him to the floor because every thing else was stable but because he needed cough assist every 2 hours they wanted him in the ICU.  We rolled him in and with in 20 minutes he went from flirting it up with the nurse to sating 85 and grabbing he bipap.  Like I said no middle ground! He required oxygen that night but was weaned off the next morning. Later in the afternoon they transferred him to the floor. Normally I wouldn't want him transferred so quickly but he was stable so I felt ok about it. Now it is Saturday and we remain on cough assist every 3 hours but we have been on room air all night and all day. 

Riley loves the vest when he's sick

This is a very different illness then what he had a few months ago.  This is all lower respiratory. He has no runny nose or really no increased oral secretions but lots and lots of junk in the lungs.  We started the vest yesterday and with the combination of cough assist it really helps clean him out.  We did a 30 minute trial off bipap today and he did well. We are planning on doing another trial later on today. Until we can wean down to cough assist every 6 hours and bipap during sleep we will be hanging out in the hospital. But it's ok because we have all of our best friends to keep us company.