Long Time, No Blog

It has been 117 days since the last update about Ryan. Some things have changed, but also, some things have stayed the same.

Ryan was discharged from the Pediatric ICU on September 13th 2012 after an extremely long and rocky 269 day adventure. The doctors were finally confident that Ryan was stable enough to go out into the world.

Bringing him home was just as nerve racking as it was the first day we brought him home from the NICU. But this time was different. Ryan required a lot more attachments. Mom and I were fortunate enough to have 7 months of training when it came to caring for Ryan's trach and ventilator. There were so many complex settings, tubes and wires that we had to learn about. By the time the doctors wrote the discharge order, Mom and I were 100% sure that we would be able to care for Ryan and that if something were to go wrong, we would be able to address the problem until help arrived.
We were given our first test with something going wrong on that day. We were not even done loading the car when Mom noticed Ryan's nose and lips were starting to turn blue and his eyes were starting to roll back. She turned to look at the pulse oximeter and noticed his blood saturation was at 42%. For those who are not familiar with what this means, a typical person's blood sats are usually in the high 90% range. The doctors were comfortable with Ryan's sats being at 85% or higher. Satting at 42% means that Ryan was not getting enough Oxygen. From our training at the hospital from the nurses and respiratory therapists, if something is not right, go straight to hand ventilation. We quickly hooked up the ambu bag to the oxygen tank and immediately started hand ventilating him. His sats rapidly went from 42% to 100%. While mom was hand ventilating, I was on the phone calling the PICU to get a respiratory therapist down to the parking lot. An RT, the charge nurse and a doctor descended 5 flights to the parking lot fast. But by the time they got to the parking lot, Ryan was stable and alert. We all came to the conclusion that his O2 line was kinked that supplies oxygen to the vent. After we fixed that problem. We were packed and ready to go.

The 30 mile trip home was the longest 30 miles we had ever driven. After our little scare in the parking lot, and being away from the assistance of the hospital staff, we were on our own. The rest of the drive home went smooth. When arriving to our house, we were met by two nurses from our home nursing company and a respiratory therapist from the company that supplies Ryan's ventilator. We transported him into his crib. And for the first time in the year and a half that his crib was assembled, Ryan was laying down in his own room.

The first two weeks really took some adjusting. Making sure everything was in it's place and that Ryan was acclimating to his new surroundings. Just as we were starting to get comfortable, we noticed Ryan was working a little harder to breath and that we would have to raise the amount of oxygen we were giving him. We found it in Ryan's best interest to go back to the emergency room at Loma Linda University Medical Center as a precaution. We know how fast things can turn bad, so we didn't want to take any chances of anything spiraling out of control. We stayed in the PICU for two more weeks to find out that there was no explanation for why he need more O2. With the doctors signing off on his release, we were on our way home again.

Ryan has been home for two holidays so far. Ironically the same two holidays as last year. This year Ryan was a sno-cone. He didn't want to stay in his costume, so we were only able to take a quick photo. For Thanksgiving, Ryan sat at the table in his high chair for the first time. He did so well. There was no complaining and he was so comfortable that he even fell asleep. Our next holiday is Christmas. He hasn't been home for a Christmas yet, so we are excited to try and make it.

Ryan has now been home since October 6th, 2012. This period of staying home is now his record. We have had several doctor appointments since his discharge from the hospital, and everyone is impressed on how well Ryan is doing. There has been a decrease in some of his vent settings and his prescribed medications throughout these last two months, which can only mean that his body is starting to heal itself and he is getting stronger. Every day that we stay out of the hospital is one day closer to Ryan living a life that is comfortable for him.