Bad Blog Slacker...

So, it has been a long time since I have written on the blog. I just wanted to ask for prayers for our family in this tough time. Ethan has been throwing us for a loop and came up with some mysterious lumps on his neck. Nobody seems to know what they are yet, and this is so stressful on me. This is a copy of what I have posted on our carepage today.

I am going to attempt to get through this. I am not going to lie, it has been a long and emotionally exhausting day for me. The problem that I wrote about last, about the mysterious lumps on Ethan’s neck, still has not resolved at all. They are the exact same as they were last week. This is very concerning to us and Ethan’s nurses still. I feel like I have been on the phone all day today, and last Friday, about this trying to get someone to see things the way we see them! Like I said before, patience is not a strong point for me, so I was on the phone A LOT!

Let’s start with the weekend…Ethan seemed to be doing better, or so I thought. His heart rate was coming down, which is always a good sign! We had attempted to take away one of the doses of his diuretic, but we had to add that back in over the weekend. I held such high hopes that this would help, but it has only helped him not wake up with swollen eyes. We did as we were told and watched him over the weekend closely. He was his happy, sassy self all weekend!

Today…I got report from Ethan’s night nurse that his oxygen saturation was 95% nearly all night long. For all you non-medical people—this is a good number, but it’s just not Ethan! We have instructions from Ethan’s pulmonary team to start giving him oxygen when his levels drop below 93%. Today he was flirting with that during his nap. We even tried putting Ethan on the vent for his nap and it didn’t bring up his oxygen either. Soooo, off to the doctor we went again! This doctor we saw thinks that Ethan’s problems are linked to his SVC Syndrome and suggested that we go see Ethan’s cardiologist this week. He even threw out words like congestive heart failure…yeah, I am really freaked out right now and have shed many tears. We will be seeing Ethan’s cardiologist sometime this week or next Monday.

Sorry if this doesn’t make a whole lot of sense. My mind is about to shut down right now. We are having a family fast for Ethan tomorrow. If you are able to, feel free to join in! I am so blessed to have the family I do! They keep me going when I feel like I can’t anymore and they listen to me blubber on the phone. I am so very blessed! If you get a chance, please say a quick prayer for our family, and for Ethan’s caregivers so they may have guidance about this matter. Thank you from the bottom of our hearts.