Picking up where I left off…On Sunday Logan was only awake maybe a total of 4 hours. 2 of those was around noon when we did a garden stone with him. He was alert, more alert than Saturday, even though he wasn’t awake much. We talked with our doctors and decided maybe it was the medicine doing this. Especially since it was like he wanted to wake up but just couldn’t. So we took him off the Ativan (anti-anxiety) and lowered his dose of gabbapentin (nerve pain). His heartrate was also very high on Saturday, even while resting. It was still high Sunday as well but now we questioned the role of the medicine. We had a bit more hope compared to Saturday, but we were still very cautious.
Brett stayed home today and yesterday. Yesterday Logan slept until late in the morning but did much better. He was awake a lot more, but started to cry out in the evening. We did get some smiles though!!! We have started to use a pain med around the clock to try and keep him comfortable. Also trying to find a balance with the gabbapentin.
He slept in until 10am again this morning. Its thrown off his feeds a little bit, but he is tolerating them better. He has been awake a couple of times and has given us some smiles. And!!! He let Brett hold him while I ate some lunch!!!!!!!!!!!!!!!! Now, that may not seem like much. But, a little over a week ago, Logan decided no one (and I mean absolutely no one) was allowed to hold or touch him except for me. He is still sleeping more than usual, but his heart rate looks a lot better.
He is still on oxygen and we have had to adjust it almost everyday, but for now he is still sitting at .5 liter. We have come to terms that he will probably not be coming off of it. However, as long as he is still comfortable (and hopefully happy) we are not bothered by it. In the midst of everything, I was in tears talking to our nurse saying how he didn’t seem happy and it was like he wasn’t here. She said we may have traded happy for content and comfortable, but that it was still good. He wasn’t in pain. That thought had never occurred to me. Logan is my happy baby…the thought of him not smiling never crossed my mind, but it happened. Its made me really think about everything.
On the part one post, a Facebook comment said it sounds like this is coming from a weary mom. That is absolutely right. I do sleep at a night when he does, but my body must not be getting a deep sleep because I am exhausted. We went from doing ok, to fearing we didn’t have 48 hours, to now being cautiously optimistic he is ok right now and learning to cherish every moment that much more. Brett goes back to work tomorrow as long as the rest of today and tonight goes well. I am nervous because I am so tired and Logan doesn’t want me to leave his side. I’ll have to be sure everything is within arms reach.
Minor progression of the weekend: