BE PREPAIRED.
I don't mean become a dooms day preper and hoard canned foods and bottles of water. (Although maybe one day that would come in handy).
Know your child's health, inside and out. Memorize the symptoms or actions that indicate your child can't breath or has reherniated (just examples). Don't rely on machines to tell you how your child is doing. Example:
Liam shows signs of desatting or difficulty breathing long before the numbers on a pulse ox machine drops.
Today I volunteered in his preschool class and because of the horrible time he'd been having with his sinuses and gtube infection, I went packing inhalers, a stethoscope and oxygen. Thank God I did because as I sat there at the "breakfast" table with him and his friends, I watched as Liam suddenly got very quiet and the color drain from his face as his eyes glossed over. I scooped him up and took him into the little preschool office and hooked him up to oxygen.
By then he had already started having some difficulty breathing. He felt better within 5 minutes. Within 10 minutes he was able to take 2 small bites of food and within 15 minutes started chatting with his friends again. By the end of school he was back to acting normal, minus his normal spunk and hyperness.
It wasn't until nearly 4pm however until we tried to go without oxygen. Well in normal Liam fashion, he ripped that cannula off and said he was all better. His spunk and hyperness returned two fold. It wasn't until bedtime, after he'd fallen asleep that I hooked him back up. His lite lungs were just working too hard and needed a rest.
This wouldn't be the first time being prepared has saved us from catastrophe. Knowing Liam inside and out has saved us as well. So many times I've rushed Liam to ER and caught pneumonia or rsv at the very early stages and it's saved him from getting sicker than he should have.
But today. I probably turned a few shades paler when I watched Liam suddenly change. The teacher nearest us, Mrs C, who had her back to us, said she heard Liam get quiet and knowing he's not normally like that, she turned and saw him get suddenly pale as well and knew something was wrong. Thankfully the teachers all stayed calm and acted like nothing was wrong.
Knowing that these teachers saw first hand how quickly Liam can go from great to bad in seconds and seeing the symptoms gives me comfort because they were able to tell me what they saw and now recognize when he will need to be put on oxygen again in case I'm not there. We created a little safety net plan in case this happens again. From now until the end of winter, oxygen will be take to school daily in case this happens again because there's not enough time to run him to the nurses office and hook him up.
I feel confident that I can leave Liam in their care and not have to worry if they can take care of him. It's such a breathe of fresh air that I could cry. I've worried that this day would come and they'd refuse to let him stay unless I was there. But no. I watched as they navigated Liam and his oxygen tank to different centers without any problems.
After being put on oxygen, all the kids were curious as to what it was. They had me explain to the kids how Liam just had trouble breathing sometimes and needs extra help. One kid asked if it was the same as the astronauts used in space and then all the kids thought it was so cool how Liam was like an astronaut. I love how accepting children are of their differences.
Mrs M, the district special education teacher came to see Liam today and since I was there we had time to chat about her view points of Liam's progress and what I can do to help him achieve his goals. There wasn't much I wasn't already doing, which she was very happy to hear. We are now using a new app to trace the alphabet and this helps Liam with his fine motor skills, something he needs lots of help with. She was going to talk to the OT and see about getting him those services to help with his fine motor issues. But for now no other changes are being made.
Today was a good day and a win against CDH. Nothing will keep my baby boy down and we have a great team standing beside him to help him through it all.
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