Home Again!

 Well Joey has survived his first rhinovvirus. It was a 3 week hospital stay that was not fun at all.  The PICU is a totally different place from the NICU. I would almost say the PICU is like the wild, wild west somewhat since the attending physicians don't stay on as long with their rotation and there is such a wide array of patients and age groups that visit.  As a parent of a sick child, you have to stay on top of your child's care and how you want things done when you're in a hospital. No one knows your baby as well as you know your baby, and you need to have confidence in that. Don't be scared to ask questions and to challenge the thought processes to force the medical community to think out of the box. A good doctor is one who is willing to listen and take things into account. I'm blessed to have come across so many who were willing to listen and accommodate my requests. Joey was definitely a rollercoaster with this rhinovirus. I have seen him sicker, and there were times of worry, but he did recover. He had pneumonia accompanying this virus and through the illness went through one collapsed lung after another, but pulled through. Praise God. I can't believe he has made it 14 months until finally getting his first cold though. I knew it was bound to happen, and it did come on quickly.  This was also his second ambulance ride to the hospital, and what was interesting is the same crew came to pick me up, and one of the guys knew me by my first name.

Joey has been home for a week now and is loving life. While in the hospital, he got the newest and greatest version of the trilogy ventilator-the Trilogy Evo, to be exact and this machine that's only 3 years old has a lot of bells and whistles, like an internal oxygen analyzer and a CO2 monitor. It's nice to be able to see Joey's oxygen CO2 output real time, since it can be an indicator as to if he is getting sick if he is retaining too much Co2. Even though his old trilogy 100, was set with the same exact settings as the Evo, I can't seem to understand why his PIPS are averaging a 25 on the new machine whereas the old machine is showing a range of 15-17. No one cane seem to explain it except that the new machine is more sensitive and accommodates for tubing space.  I'm concerned that the new machine may be delivering more than what Joey's needs, but everyone seems to be reassuring that PIP of 25 is not too high. The investigation on my end is still pending! It just seems suspicious because even on the Servo, hospital vent, his PIPS ranged similarly to the Trilogy 100.

Another interesting thing that occurred in the hospital, Joey grew another tooth. He had difficulty sleeping through the night, so they prescribed him clonodine.  They think he was experiencing ICU delirium, which I didn't even know was a thing. I personally think Joey got lonely in the hospital in the evening and the nurses in the hospital weren't available (they have more than one patient) to comfort him like a parent or his home health nurse that is just dedicated to him at home. The kid is getting older and is more aware of his surroundings and who is with him. Who could blame him. Needless to say, we have brought him home and he's back on a better sleep schedule with parents and siblings who are ready to love and pay attention to him. The hospital is so mentally draining.

I did meet another sweet neighbor, Samantha, who is mom to Griffin. We had some good talks and it was incredibly comforting to see a familiar face.  I had lunch with Ainsley's mom, Deneta, too at one point too.

We are so glad to be home though, and hope that we stay home for a long time.  Now the challenge at home is finding another full time night nurse.  We had a new night nurse start yesterday, and we were so happy to have her. Daniel and I have had to stay up the last 3 nights with Joey and it has been difficult for our physical and mental health. We desperately need one more full time night nurse so that we can rest and be mentally available during the day.  Last night was the first night that I got a full uninterrupted 8 hours of sleep in a long time, and I feel like a new woman!

We took some family photos yesterday and they are just so sweet.  We have taken some long walks around our neighborhood with Nurse Halie (a good 3 miles), and Joey was all smiles the whole time. I think at some point, I'd like to go see the outdoor lights at Cheekwood, if it's not too cold.  Although we have a huge pandemic going on, I think outdoor activities, spaced out from the crowd, are completely fine. We still need to live life.  

Joey is living his best life right now and we are so grateful for this wonderful blessing!