I’m sorry for being silent all day. I have not been in a very good headspace. Hawk had five seizures overnight and then another five today. He had a coughing fit and that made him very unhappy and his heart rate went back up to 140 for a while. Then he spiked a temperature. The x-ray of his lungs from this morning looked worse than yesterday. With all that combined the doctor decided to go back up on his fentanyl sedation. I guess he’s just not ready yet.
I miss him so much. We have seen his eyes a couple times today though so that’s been nice. Once was when he heard Gramma’s voice on FaceTime and he made sure to open up and look at her. That was really good for her heart as well as mine.
Good news is that all his labs are continuing to look better. He’s a little less swollen in his arms and feet. Switched from Ativan to klonopin. Starting a new seizure med called fycompa tonight. He has tolerated full feeds through his gtube all day. So there are so good things, it was just hard to see that today.
I taugh my art kids so that was a bright spot and a good heart-to-heart with a close friend on FaceTime. Then I had straight carbs for supper from Marlowe’s Tavern, which also made me feel better (at least in the short term). Thank y’all for supper money! I feel so spoiled. I facetimed home and we all ate supper together. Ugh we miss home. Matt and Lake are coming to visit again tomorrow. We each miss our other kid so much!
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