Tuesday, September 26, 2017

SPINRAZA #2 - DONE!!

This week has been crazy busy for us. Some for the good; some for the bad. Let's start with the bad, then end on a good note.

The transmission went out on the van. Not cool. I get frustrated with my dad sometimes because it seems like he's always finding something wrong with the van. I'm sure there are many of you who have dads like that, too. Well, he mentioned a couple of times there was a “whining” with the van. I ignored him and also started ignoring the whine. You know, just turn the radio up and the problem will go away. Well it didn't. He took the van to get it looked at and sure enough, the transmission was going bad. Not something you can mess around with for sure. Dad took the van to get fixed and brought me the old, big, brown van to drive in the meantime. The Terdmobile. Good old Terdy, still getting us from Point A to Point B when needed. I couldn't take Colby anywhere in it because the lift is broke, but I was able to run errands, go to work, etc. There were some issues in getting the van back, but we finally did on Friday morning. Just in time because we had a trip to Cincinnati Childrens this week for Colby's Spinraza injection. More about that later in this blog.

The water chamber on Colby's vent tipped over last Wednesday, causing water to travel through the vent tubing, into his trach and yep, into his lungs. Colby's nurse somehow got a pillow caught in the tubing and caused the water chamber to spill. I know it was an accident. I know she didn't mean to. I know she felt horrible about it. However, that doesn't change the fact that her carelessness put my kid in great danger! Thank God I was home when it happened. We immediately began doing CoughAssist treatments and trach suctioning with Colby. I was online with other SMA moms to get advice on what to do, how aggressive to be with treating the issue, etc. We monitored Colby very closely, gave him extra CoughAssists throughout the day, and re-positioned Colby frequently for postural drainage. I have to idea how much water got in his lungs. Scared me to death. My mind started racing. He'll get sick. He'll get pneumonia. We'll have to cancel the Spinraza injection. You might think I'm overreacting, but really I'm not. All that very well could've happened. But it didn't, and I'm thankful we were able to “fix” Colby without having to go get x-rays, get on antibiotics, him getting sick, etc. Living in fear isn't very fun sometimes.

Let's move on to better, nicer topics. This past Monday was my birthday. My mommy offered to take me to lunch, anywhere I wanted to go. I said hey, there's a Frisch's Big Boy down the street. Lived around here 20 years and have never been. So that's where we went! Patty melt and hot fudge cake made for an excellent birthday lunch. I got lots of cards, calls, texts, visits and gifts. It was a great birthday. Thanks to everyone for taking the time to make me feel loved on the celebration of the day of my birth!

To say van transmissions ain't cheap is an understatement. We had some very considerate family and friends help us pay for the van. I cannot thank you enough. When I found out it was the transmission, my head started spinning. I had no idea how I was going to work enough extra hours to pay for it. I feel with these Spinraza injections, Colby needs me now more than ever. I'm working on getting him extra PT sessions and also OT. We need to really work to make the most of this medication he's receiving. Thank you to everyone who gave me “birthday money” which was really funds to help pay for the van. It has taken a huge worry off my mind, and it's appreciated so much.

And last but certainly not least, Colby's 2nd dose of Spinraza is a done deal! We went up on Sunday night and stayed again at the Ronald McDonald House. Had to be at the hospital at 7:30am. Colby's lumbar puncture went as smoothly this time as it did last time. He did, however, wake up at 2:30am and didn't go back to sleep. So obviously he's having some anxiety about all this. Understandable! I think for next injection, October 12th, I'll see if they can prescribe him a little something-something to help with that. Everything went very smoothly, just like last time, and we were home at 2:45 yesterday. I checked on him hourly through the night. He had no issues with sleeping. He's doing great. Keeping him flat for 48 hours. I've been giving him Tylenol since he had the procedure. We're going to stop the Tylenol and see how he does. He certainly doesn't seem to be in any pain or discomfort. Such a tough kid! Looking forward to getting these loading doses done. Halfway there!

Okay, I really, really need to stop typing and get something done today. Is it bad that I want to curl up on the couch and watch movies all day? But the mound of mail on the table and loads on laundry waiting on my tells me that's probably not an option. But then again, would it really matter if I took a couple hours to chill out?! Maybe throw in a load of clothes, then some couch time? We'll see how my energy level lasts.

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