What a week we've had. So after Baby GL's freeing episodes he manage to come to a nearly full recover. After getting put on CPAP we got the news that he may be able to try high flow. That's fast progress because usually it's CPAP for a few days then high flow. He was on CPAP maybe 24 hours and when we returned to the hospital we found him on only 1/2 liter of oxygen. Turns out they tried him at 4 liters and his saturations were consistent at 100%. By the afternoon, when we came to see him, he was down to .5 liters. That's almost home oxygen settings. Huge recovery from being extubated 2 days prior. By the next day he was on .25 liters which is his normal home oxygen settings. He just impressed us with how quickly he recovered.
During this time getting off the higher amounts of oxygen there were some cultures drawn looking for any bacteria or viruses. He had struck a fever a couple days so they were searching for a reason for it. Results came back with a bronchiolitis virus. Not a common one that the nurses had heard of, but apparently a baby had been in recently with the same virus. It's treated just like any other virus, with antibiotics. The virus didn't seem to affect baby GL's attitude. Later on they found MRSA which is another type of virus, one that is contagious so the staff had to wear their gloves and gowns every time they came in his room.
While intubated Baby GL was pretty heavily sedated. With that came a journey of weening of the sedation. It's a very slow process. He would ween off one med, but change to another that was not quite as strong. The nurses grade him on a scale watching the signs of withdrawal. A couple things they watch for were his irritability, trembling limbs, and even sucking. The nurses took his obsession with pulling his oxygen cannula in his mouth as excessive sucking. We had to reassure them that the cannula game is something we've played for months. It can definitely get confused with excessive sucking.
So something we found out days after discover and treatment was that Baby GL had a perforated eardrum. The nurse was briefing us about new meds including an ear drop when we found out. Surprise to us. I guess they were able to get on top of it to treat it without major damage. We found out later the virus he had could cause ear infections. We just hope it won't mean he'll get ear infections regularly.
By Tuesday, Baby GL moved to the 8th floor. He wasn't in need of the ICU any longer. Great news, but for us, we prefer the ICU where he gets regular attention. We knew, though, discharge must be close. In the move the hospital staff managed to leave behind the glass angel ornament Babcia (Grandma) gave him for Christmas. Housekeeping didn't find it important when they came across it and tossed it in the trash. The hospital was very nice about trying to replace it for us, but it was a lost cause. There's always something that happens when we go to the hospital.
Some goals to meet before coming home were to get back to our regular feeding schedule. Speech worked on his bottle feedings and even made an attempt with applesauce. He did pretty well, typical first food issues, but we were given the go ahead to keep trying.
Baby GL will come home getting daily Lovenox injections. Something very familiar to me since I took that during my pregnancy. While he had a picc line near his clavicle a blood clot developed so he needs the blood thinner to break it up. I had to learn the injections with the nurse for us to get that checked off our discharge list. He'll get those twice a day for a total of 6 weeks when they'll perform another ultrasound to look for the clot. We also had to learn his other meds because he's still in his weening process from the sedation meds.
Well, after all that, Baby GL came home last night. It was a wonderful feeling, but I could feel the anxiety creeping in. We really want to keep him safe now and we worry that we're not doing enough to protect him from all the germs and illnesses floating around. I don't know that we can keep him completely unexposed. My husband was so happy to have him home he slept on the couch next to him in the bassinet. He was awaken by the nurse coming by the check on Baby GL. His weight has come down, 11lbs 3oz. He looks very healthy, though.
We've spent all today getting reacquainting with our care habits and his habits. The biggest issue is keeping that cannula out of his mouth, an impossible task. We can see some of the withdrawal symptoms coming out so we are trying to be really on schedule with is sedation meds. All week we've been listening to him cry very quietly with his very horse voice from being intubated. Today he's showing improvement, his coos just get louder each time. The scratchy cry is pretty cute, though. Come Monday he'll be seeing the pediatrician to see about adjusting his sedation meds. Hopefully he'll see improvement so we can get him off those meds.
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