September 6, 2011
What a day. Wow… So I make my usual milk run up the hospital early this morning because Wyatt was supposed to get another follow-up MRI today. I walk in his room and he’s all smiling and being Mr. Handsome as if he knew I needed it. So I went ahead and took advantage and held him. Since I know PT wants him to slowly progress to tummy time, I decided to give it a try to hold him on my chest. Oh boy, I think we started something now because he really liked it. He fell sound asleep and drooled all over me. He started drooling a lot more the last few days and chewing on his hands, so we think he might be teething already. I must say, I enjoyed holding him in that position as much as he did. It’s the first time I was able to hold him on my chest since the day he was born. After a little while I had to put him back down in his crib though because I had to pump. Well, he did not like that at all. He managed to have 4 breath holding episodes in less than one hour. He’s quite good at it I must say. Normally, he has one episode and then is so worn out that he takes a little nap afterward. Well, not today. He just wasn’t happy for some reason, whether it was because I stopped holding him or whether it’s because he’s uncomfortable from teething. Either way, it was just one episode after another. Not even sitting him up or wiping his face with a wet wash cloth worked when normally that would calm him back down. So I gave in and held him on my chest again. Well, just to show you how much he’s really in charge, he stepped it up when I tried to put him back in the crib the second time. He was sound asleep on me again but as soon as I tried to move him back to his crib, he decided to move his head around so much that he pulled his trach out. Talk about my heart rate and blood pressure going up. The vent alarm is going off, his Sats are dropping and all I could hear was an air leak but I couldn’t see where it was coming from. I didn’t even have time to call for the nurse or RT. I put him down in his crib and after a quick glance at the circuit to make sure all tubes were connected, I pulled the polymem out from around his trach and sure enough, he managed to wiggle the trach out (it’s a flex). By that time two RTs were in the room and we scrambled to get one side of the trach tie undone (which is a pain) so we could put the trach back in. And then what does Wyatt do? He looks straight at me with this innocent little face like nothing ever happened. Then, a few minutes later, he has another breath holding episode but this time he’s finally worn himself out enough to fall asleep afterward. So I figured, he’s asleep, I’ve had enough Emergency training for today, I should head home. Wrong again. He’s still sound asleep but has worn himself out so much now that he’s desatting and needing extra O2… I guess Wyatt is just prepping me for what it’ll be like when he comes home. I hope he won’t be one of those kids that holds his breath when he doesn’t get what he wants or worse, pulls his trach out and throws it just to see how fast we can run. It’s going to be a daily party at our house… Well, the MRI was pushed back to 4pm so I did decide to go back home at lunch. And then the call came at 130pm. Private Home Nursing was approved by Medicaid! They approved the requested 24hours of nursing for the first 30 days, followed by 16hours of nursing for the next 30 days, and then 8hours of nursing after that. That works for us. It’ll give us a chance to have nurses as back up while we get in the swing of things, the other kids get used to everything, and we can establish a new routine at home. And then we’ll probably just use the 8hours for night time nurses. So the plan is for Wyatt to be discharged this Thursday. The ambulance is scheduled to pick him up at 1pm. I’m sure it’ll be quite an ordeal to go over all his discharge papers and instructions, get him buckled in his car seat, and then get him strapped onto the stretcher with all his gear on tow. Not sure if that counts as a picture moment but it’ll be unforgettable. So about 48 hours from now, he should finally be home. I’m keeping my fingers and toes crossed.
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