Today was more dialysis training. I am pleased with how it is going. I think I am getting the hang of it. I am excited to see how well I do on my own. I will probably make mistakes but that is how I learn. As long as I don’t kill Ethan, I will consider it a win. We have come this far, so killing him is unlikely at this point. I have my BFF dialysis nurse as my cheerleader. I am picking him up his cheerleading outfit next week.
Today was the first day that I have taken both my kids out to lunch since before covid. Both kids sat across from me. They have similar features. I feel an overwhelming sense of pride looking at their little round faces. I am so thankful I have them both.
I read about another parents loss in one of my Heart Transplant Pages I am a member of. This mom lost her child this week. I cried for her. It is hard to even process how close we were to that. We were teetering this line for a while. A lump forms in my throat just thinking about it.
Hug your kids. This mom can’t hug hers. I was so upset I thought about quitting these groups. I think of my post on her comment a few days ago when she said things were bad, offering words of encouragement as someone that has lived the fiery hell of transplant that went awry.
As I thought about it a little longer, I asked myself, “what is this trying to teach me?”. To be grateful? Grateful to those who held us up while we were drowning in transplant horror? Maybe I helped her in that moment?
Then it dawned on me. I am part of the safety net. These are the same people I turned to that I knew would understand. I can’t leave this group. There can’t be holes in the net. As hard and emotional it is to read these posts, this mourning mom is drowning and needs a net. I don’t know her. But she needs the net. So I decided to stay. I still have the lump in my throat. I still have tears for her child flowing down my cheeks.
Then I hear that Ethan has vomited AGAIN. He has so much saliva from his tongue. He swallows it in his sleep. He woke up from his nap and had explosive vomiting all over the bathroom. He felt terrible. “Who cares Ethan, it’s easy to clean up.”
I am pretty sure the vomiting is from the saliva but he started his new medication today. It could potentially cause upset stomach. We will see how this goes.
Ethan’s tongue continues to hurt and is still causing him to eat less. I am hoping this stupid thing heals soon. It looks like it is missing a chunk of it. He pretty much bit straight through it on the one side.
He was able to make another YouTube video yesterday that he posted today, which was exciting to see. That is how I know he is getting a little energy back.
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