What happened to me this afternoon with a couple of new pictures

“Its the whole neighborhood right? I mean… you guys are working on it?” The rain was coming down in buckets while I stood next to the pickup truck of the power company supervisor. “My son inside is on a ventilator and we have about 8 hours of battery but after that we’ll have to go to the hospital unless you can get the power back on soon.” I was glad that I had stepped onto the porch at just the right time to flag down this guy. The power had been out for about a half hour at this point.

“Looks like a fuse blew on the pole here.” He said pointing across the street from my house at the same time a large cherry picker rumbled up to the pole. “He’s gonna re-fuse it now and you should be all set.” He seemed to be annoyed with my questions but I didn’t care.

“Well, as long as it doesn’t take 8 hours, I really don’t want to spend time in the hospital because of a bit of rain and wind.” We actually had 12 – 16 hours of battery life but he didn’t need to know that. The old man assured me it would only take a few minutes and I ran inside to get out of the rain. Liam was resting in his special tomato and never in any danger but not having anywhere to plug in his equipment was stressing me out.

I watched the tech jump into his basket and put new fuses into the transformer on the power line and the lights were on in a flash. I hooked Liam back into the main power and got the battery recharging just in case we’d need it again. The trucks drove away and Karin and I got Liam ready for his visitors. Within a few minutes the whole gang was here. His physical therapist, his occupational therapist, the services coordinator from Liam’s early intervention program and a nurse from the same program all got comfy around Liam on the floor and we started his exercises and talk about any changes needed for his care. I am usually at work when PT is here and so I was excited to work with his therapist to make sure the stretches that I work with Liam are the right moves. While normally we meet with only one or two of them at a time today was just a meeting to ensure that everyone is on the same page.

Starting at his toes and working our way up with stretches, we barely made it to his knees when the power went out again. We hooked Liam back up to his battery and put an HME into his circuit. The HME acts as a nose, humidifying and warming the air pumped through his circuit while his humidifier and heater are without power. Nothing that we could do would change the power problem so we proceeded with Liam’s work. I’m so proud of all that he’s accomplished. His flexibility and muscle control have improved so much since we started meeting with physical therapy. Today he was active and eager to participate. He recognized himself in the mirror and was quite enamored with what he saw. That kid of mine is amazing.

When your child has the kind of medical needs that Liam does your life is filled with contingency plans. Most of them end with “and if that doesn’t work, just go to the emergency room.” Its not an option I like to think about. Simply walking in the door will more than likely leave us stuck there for a few days no matter the reason and going there for a non-health related reason would really piss me off. As well as probably pissing off my shitty insurance company. Yes we could go to my parents’ house with all of our portable equipment for a while and we would, long before we would go back to the hospital, but that doesn’t make it any less stressful. The waiting. Which would come first? Our contingency plan or the repair to the power lines? It made me miss the days of worrying only about the food in the fridge when the power went out.

It was only a few minutes before the supervisor from the power company pulled up and parked in front of the house. We are on a registry with the state Department of Health and with the power company for people on life support equipment but I’m sure that it was because I flagged him down earlier that he stopped by and not some sort of protocol. Either way it was much appreciated. He let me know what was going on, and that a second truck was needed for the repairs down the road. It would be almost an hour and a half before the work would be completed. It didn’t take nearly that long but at least I was prepared for it. I was useless for the remainder of the appointment as my attention could not by taken away from the two crews of guys working to restore my power. The rain and wind made what is already a dangerous job look even more terrifying.

The power was back on again in half the time we thought it would take. The trucks took off and all of our visitors finished up their paperwork and left in almost the same order they arrived. All of the sudden Karin, Liam and I were home alone and all was well. Liam, tuckered out from his workout, lay asleep on a quilt on the floor. Karin and I settled in on the couch for a relaxing cup of coffee and something to watch on TV.

It was an eventful afternoon but we are none the worse for wear. As I said I couldn’t be prouder of Liam for all of the progress he’s made and his willingness to work hard for us during his workout. 9 months in a hospital bed and his syndrome have left his muscle tone a bit weak for his age but he remains undeterred and is still getting stronger by the day. Go Liam!

Its back to work tomorrow for me and Karin has plans throughout the day with a very, very close friend who she doesn’t get to see very often. It will be her first meeting of Liam and it is a very big deal. I’m sorry that I’m going to miss it. Have a good night all. There are a few pictures since I haven’t posted any in a while. The one of his lion hat is a few weeks old but the other was taken during the power outage.

Night all.


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