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Michaels therapists haven't come for a few weeks now, and the day after their last visit we ended up taking Michael into the emergency room. He had been spitting up more than normal and then that day his alarm went off. We had four recordings sent in that weekend and each time I sent one in my heart stopped. I have learned to wait about an hour to get a call back and if they haven't called back within that time then it's not serious. I hadn't received a call back so I called into the cardiac department and they decided to have him brought in for a check. A very thorough check. EKG's and X-Rays and fun stuff. My mom went with me to keep me company and thank heavens we didn't need to check into the hospital. They decided he could have a stomach bug that was setting off his alarm when he was spitting up. Well it's been three weeks and the spit up has continued. His therapists come on Wednesday and we have an apt with the cardiologist next week to see how Michael is doing and up his medication doses. We'll see on Wednesday how much he weighs and I'm praying for weight gain again. He'd been gaining so well with his feeding tube and I'm really scared that they are going to ask me to start using it again. I just don't feel like he's keeping enough down. What am I doing wrong?? This is a question I ask myself daily. And then I pause and bury that feeling and move on. Because I have to. No time to dwell.
I find myself keeping busy to stay sane. Every time I sit down I feel guilty that I'm not spending time with the kids or taking a nap when they are. If I sit the sweeping won't get done and if I nap the laundry won't get done. Is there really so much to do? Yes. Today I was doing the dishes when Michael's 2pm alarm went off but because he was napping I figured I could wait a few minutes until the dishes were done. I filled the syringe and set it down and of course I then forgot about it. He woke up at about 3:30 and it wasn't until then that I noticed the full syringe still on the counter. It's times like this I want to slap myself in the face. I feel stupid. I'm running in circles and still forgetting things. Thank goodness my forgetfulness hasn't affected him.
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We got to spend some time with her cousins this past week and they thought this was pretty funny
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