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.

The Big Day

Tuesday was the first day of pre-school.  We were nervous that Riley would have to miss it because he wasn't feeling well over the weekend but by Monday he seemed fine so we decided to let him go. We've been talking it up more and more over the past few weeks hoping to get him more excited.  We went to the pre-school open house a couple weeks before and he had mixed emotions. He recognized Miss Jen the speech therapist which was a big plus but he was upset the rest of the time.  Marc walked him around and showed him his stander and his big exercise ball which he seemed to recognize and was a little excited about but it was hidden behind a lot of tears.  We were given the option to let him go more than twice a week.  We didn't know that this was an option but after some discussion and some encouragement from his home OT and Speech we decided it would be a better fit for him to go more on a consistent bases so the plan is to start him going Monday through Thursday (a little kink in that plan).
The hardest part about school is getting up early yawn

Big boy all ready to go. Thanks Grandma Ogden for my handsome new school shirt!

 But the BEST part of school is the bus ride! The day started off a little rough but Nurse Marsha said that he did pretty well over all.

"yeah mom, school was pretty great"