We came home on March 2, that first week we visited our pediatrician and received home visits from speech therapy and home nursing. He left the hospital weighing 5 lbs. and 6 oz. By Monday, he was already 5 lbs. and 9 oz. He was still on 3 medications and had oxygen and a feeding tube, but he was growing and getting better, we could handle that.
It was a whole new world having to deal with all these new people, and home health care people that had to bring oxygen tanks, feeding tube bags, and everything else the hospital provided while we were there. I caught a glimpse of what my brother and sister-in-law having been dealing with for 10+ years now. Thank goodness for their advice and telling us what to do and what to avoid.
Isaac at home showing off his basketball fists.
Emily loves her little brother and has to hold him every chance she gets.
Emily is a great big sister. She is his second mom. She was holding Isaac and he began to cry and get pretty fussy. Being the good dad I am (hee hee), I thought I would swoop in and save the day, grab Isaac and calm him down. Instead she waved me off and told she had it, all the while shushing him and trying to give him his binkey saying "it's ok, it's ok." Maybe I need to sit, watch, and learn.
On March 14 we headed down to Primary's again for Isaac's appointment to check everything and get his stitches out. The night before the appointment he was crying pretty good because he was getting hungry. Lisa went to go make him a bottle; meanwhile, he just stopped crying. He had pulled his feeding tube and oxygen tube out of his nose! No wonder he stopped crying, he was finally comfortable. So we had to put it back in. I was the one getting all stressed and Lisa grabbed the tube and put it right back in, no sweat. Come to find out, at the appointment the next morning they pulled it back out. No longer needed.
Isaac's EKG- he's got more wires than in the CICU
The cardiologist mentioned that his breathing seemed to be more labored than he liked, but the nurse practitioner agreed with us as parents that it didn't seem to be too far out of normal for him. He proceeded to give instruction on what to do if his breathing changed and if we felt we needed to talk to a doctor. Little did we know that in 2 days we would need his instructions.
Early, early (12 am or so) Friday morning (March 16) Lisa woke up to feed Isaac. She noticed he was really struggling to breath. She woke me up to get my opionion. It wasn't looking good at all. He was sucking in so hard you could see all of his ribs and more. He was laboring hard and not getting much air at all. Grandma and Grandpa came over in a moment's notice to stay with Emily and Eli, and we were on our way to the emergency room at Primary's.
By this time Isaac had very little air moving in and out of his lungs. He was very pale and lethargic. For how calm and deliberate the doctors and nurses acted, it was surreal to think about how blessed we were to make it there in the time we did. He nearly passed out on us and was just sweating drops on his head. The first thing they did was suction out his nose and throat and change him to hi-flo oxygen. This oxygen is like holding your head out the window on the freeway, it forces air into your lungs. Within 5 minutes he perked right back up and was acting normal, fighting and kicking while they inserted an iv and took x-rays.
Isaac in the ER getting ready to go get an X-ray
The staff in the ER said he had symptoms of RSV and would get worse before it got better. We were transferred back upstairs to the PICU (Pediatric Intensive Care Unit). How scared, sad, depressed, emotional these few minutes were. Back to the place we just said goodbye to thinking we wouldn't see it again for years. The staff took blood samples to test for RSV and other respiratory infections, hoping to pinpoint the cause of his inability to breath. In the mean time, we were treated as a "dirty" patient, meaning that our child was sick with an infection, and probably would be in the PICU for at least a week for the virus to run its course. Horrible!
In the PICU he acted just fine! They inserted a feeding tube because they were not sure how he would take to a bottle being sick and having struggled with his breathing. He proceeded to pull it out along with his IV. His supplement oxygen steadily decreased and the staff couldn't figure it out. His first result back was the Rapid RSV- NEGATIVE. Good, but the other screen was still out.
Mom and Isaac in and out of sleep. What else do you do in the ICU at 5 AM?
The nurses felt he might not be sick, so they kept him bundled to protect him from getting sick by the other kids in the ICU.
Isaac before we left the PICU Saturday
With the feeding tube being back in only 10 hours, oxygen down to the level it was before entering the ER and all the screens coming back negative, they decided to send Isaac upstairs to the CSU Saturday afternoon for one more day of observation. After no complications and just improvements, they sent us home early Sunday afternoon, wondering what had just happened and trying to catch our breath from a wild weekend.
Since then, he has only gotten bigger and stronger. He is sleeping 5-7 hours a night, which Lisa loves. He weighs in at a ginormous 7 lbs 2 oz. He gained a half pound in a week. More and more alert and active. He is even in the early stages of holding his head up. Other than Isaac's minor bump in the road, everything has been progressing better than we could ask. Those blessings are still coming in and we are still being protected and blessed.
Our 3 little miracles!
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