Yet again, it has been a few days since my last post. Toby screams literally all night. I have not slept in months and I am finding it hard to even keep my eyes open to write this. He is now needing 2 liters to keep his saturations at night. He is doing okay with his 0.5 liters during the day though thankfully. We see his pulmonary doctor on Tuesday so as long as he does not get in distress, we will discuss the issue then. The next morning after my last post Toby woke up with a fever and developed two new sores on his bottom. The doc looked at them and believes he does in fact have a staph infection :( so he is now on ANOTHER ten day course of antibiotics. He is still having fevers so we are giving constant tylenol. He is not feeling well overall from the strong antibiotic he is on now as well. I pleaded with his doc to try something stronger to help my poor baby sleep. They wanted us to try benadryl. Lets just say that was a COMPLETE disaster. He screamed even more and seemed to be even more uncomfortable. We are giving the benadryl one more try tonight and if it turns out the same way I will be talking to his doctor tomorrow. I often spend my days wondering when Toby and our family will get a break, even for a week or so. Dad and I are worn down from watching Toby in constant discomfort. A heart can only handle so much
Posted on: Fri, 23 Jan 2015 00:23:59 +0000
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