It’s Asher’s world and we’re just living in it.
That’s the running joke as I sit here back in Children’s Hospital, this time in the Pediatric Intensive Care Unit (PICU), watching doctors and nurses fuss over my now 5 week old because (a) you have to keep some sort of sense of humor when you’re dealing with this crap and (b) Asher has proven that he will be the one calling the shots right now and that I should stop making plans for him.
This week we were supposed to take a short break from therapy and the millions of doctor appointments that we usually have scheduled. We were supposed to go to Dallas on Friday to introduce him to some more of his family. We were supposed to continue to acclimate to life at home and start a routine.
Instead, we are getting acclimated to a new wing of Children’s Hospital. We are meeting a new team of doctors and nurses. Asher is learning to breathe with the help of a ventilator and I am learning what a whole new set of numbers, beeps and machines mean. We are once again staring at the brightly colored hospital walls and wondering how on earth we got here.
On Sunday afternoon I noticed that Asher was having a little bit of a harder time breathing. His body, tiny as it already is, seemed to be working extra hard to catch his breath and as a nervous, first time mom, I consulted the only woman I would trust to tell me I was overreacting, Chris Hau. Unfortunately, she shared the same concern I did, so we decided to take a quick trip to the ER, knowing that we were probably just being overly cautious, but wanting to err on the safe side.
Within 2 minutes of walking in the door of the Children’s Emergency Room, my tiny human was surrounded by no less than 20 people, quickly hooked up to several different monitors, getting breathing support with doctors from all over calling for different tests and labs to be taken.
I guess I wasn’t overreacting.
It was literally like a scene from a tv show, where the patient comes in and all the doctors and nurses are fighting to get their hands on the patient to find out what’s wrong.
That scene isn’t as fun to watch when it’s your kid and you’re the nervous mom in the corner that everyone keeps sympathetically glancing at.
Fast forward to today, things got worse (and will likely to continue to get worse) before they get better. It looks like Asher has some sort of infection, but we still aren’t sure which one or what the outcome or treatment plan looks like. For now, he is breathing with the support of ventilator and is sedated to keep him as comfortable as possible while he body tries to fight off whatever this is. We are settling into the PICU because it looks like we could be here for a short while and we are *trying* to continue to find the silver lining. We caught it early. We did the right thing by coming in right away. We are in the best place possible for treatment. We are so lucky that Children’s is so close to home. I have a beautiful baby boy and even though he is going to probably continue to scare the crap out of me, he is mine and I wouldn’t trade our journey for anything in the world. We have an amazing support system and I continue to be blown away with how many people love us.
That being said, if there is one thing that I have learned throughout this whole NICU/PICU process, it’s that there can never be enough help and never enough prayers. So I am going to shamelessly ask that if you are the praying type, please keep my sweet boy and his team of doctors in yours this week and if you are not, send any good vibes, positive thoughts or virtual hugs you may have our way because it looks like it is going to take a village to survive living in Asher’s world.
Asher with his Hamma and Hampa and their little one because we truly, 100% would not have survived that last 5 weeks without their love and support.