Took Colby to Cincinnati Children's yesterday for his 2nd round of palmidronate infusions. These are to help with his low bone density. Normal range is +2 to -2, Colby's is usually around -4.1. Left home around 10:00, and by the time we drove up there, went through Admitting, and got to our room in the TCC it was about 1:00. They didn't start Colby's infusions until 9:30. It was just a bunch of blah blah it seemed. Had to access Colby's port. Had to take labs. Had to wait for lab results. Had to wait on endocrinology consult. Had to wait for shift change. Had to wait on only who know what else. The infusion runs over 4 hours. I guarantee we won't be getting up there that early next time we do these infusions. Lucked out and got a room at the Ronnie Donnie House, so I sent Dad over there and I stayed in the hospital room with Colby. We were discharged shortly after rounds this morning and were glad to be heading home.
Here's where it gets nasty. First of all the weather was for shit. Cold, windy, dark and dreary, raining cats and dogs. Just totally yucky. So Dad was driving. Colby was in the middle in his wheelchair. I'm in the back seat keeping an eye on Colby. We were a few miles from home and I noticed Colby's oxygen was slowly starting to tick down a little. No big deal. It had been 97-98 the whole ride home, and now it was hanging out at 94-95. But still, this ain't my first rodeo, so I perked up a little. Colby was due for his 3:00 IPV and CoughAssist treatments and I knew the sooner we got him home, the better off we were going to be. Then his oxygen slips to 93. No problem, I thought, I'll just give him a round of coughs and we'll be fine until we get home. So I go to turn on the backup battery, because Colby's CoughAssist machine is a huge honkin' piece of equipment and requires its own power source, and it is completely dead. Dead. Dead. Dead. Won't even click on, deader than dead. Colby's oxygen is starting to drop steadily. He's in the 80's and looking very uncomfortable and in distress. I can hear the gunk rattling around. I suction his mouth and his trach, but he's getting worse and worse. I got out the oxygen tank and hooked it up to Colby, then very calmly tell Dad he needs to get on it and get us home ASAP. Well, I thought I sounded calm, probably in reality there was terror in my voice. Looked at the pulse/ox and Colby's oxygen was reading in the 30's. That's right, the 30's. And I had no way to clear his secretions except for oral and trach suctioning because I have no way to power the fucking CoughAssist machine. God bless my dad, he gets a little panicky during these situations. He kept saying, what can we do, what should I do? Pull over? I was like no, we're so close to home, just GET US HOME. By then Colby's oxygen was back up in the 70's and rising. Slow and steady, it went back up into the 90's and the color was back in my sweet boy's cheeks. I kept telling dad, he's fine, he's okay, telling him Colby's oxygen numbers. If putting oxygen through his vent hadn't worked, my next step would have been to use the ambu bag on him. Long story short, we got home, gave him his cough treatments, and Colby is fine now. He's back there just jabbering away, oxygen and heart rate perfectly normal.
I, however, am not fine. All of this happened after a trip up to and overnight stay at Cincy, which is stressful enough. I'm exhausted. Completely physically, mentally and emotionally SPENT. I usually don't panic when Colby chokes like that, but when we were in that van, and I had no way to clear his secretions, and we were travelling down the road in the pouring down rain, I started to trip out. I kept saying, "It's ok Colby, it's ok, we'll get you cleared out." I kept telling my dad, "He's ok, he's ok, his oxygen is in the 90's, he's ok." But inside my guts were churning, my heart and brain were racing, and I was praying like I've never prayed before. God, get us home safely in time to help Colby, please. So if you've called or texted tonight, sorry I haven't answered, not much in the mood to chit chat. Please understand. I need some quiet down time to recover from today's events. I wouldn't wish SMA on my worst enemy. It's mean. It's evil. It can show its ugliness at any given moment. I can't begin to explain how helpless it makes you feel. The end.
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