I apologize again for the cut and paste, but I wanted to update everyone about Ethan. This is from our care page posting, and I am going to bed soon!
I need to start out by saying how extremely thankful we are for all the prayers that have been offered in our behalf today. Through all the fasting, prayers, and thoughts, I was able to feel some peace today and we actually got some answers. We still have a ways to go, but we are now on the right track I believe. We are so blessed with our fantastic families that always jump in when we need them to! I have been touched so much by everyone. Thanking you just doesn’t seem like nearly enough!
Are you waiting for the answers yet?
I e-mailed Ethan’s cardiologist last night. We are so blessed to have him as Ethan’s doctor! I can e-mail him and usually get a response back that same day. He is truly a great doctor! He helped put my mind at ease some when he said that it doesn’t sound like Ethan’s heart is the problem. He said that if it was Ethan’s heart, he wouldn’t have the energy he has now!
On to today…last night I had also e-mailed our friendly NP from the vent team just letting her know of what had happened last night after hours. She called me this morning and said that she felt we should just bring Ethan to the ER at U of M and it was finally time to get down to the bottom of this. So, like good parents, we took Ethan to Ann Arbor and spent the day there. Ethan finally got the ultrasound done of the lumps on his neck. The preliminary verdict is that they are just groups of blood vessels. The theory is that when we tried to take away some of his diuretic, the fluid just backed up and it is showing up in his neck. Ethan got another whammo dose of Lasix in the ER and he will get one more dose tomorrow. His pulmonologist thinks that he is retaining fluid in his lungs and that is why his oxygen levels are lower than normal. It seems so simple, but yet so complicated.
The other theory that cardiology threw out at us was that “something is blocked somewhere.” We are to give the meds and watch Ethan. If the lumps do not disappear within the next week, Ethan will probably have to undergo more testing, like and MRI or something similar. Out of all of this, we have more questions, but we finally seem to have some answers too! Weylin, Ethan, and his nurse are heading to Ann Arbor again for a fun-filled day of appointments on Thursday! I am a little sad that I am missing the appointments, but it will be good for Weylin to do! Ethan will have an echo and see his cardiologist, see his vent team, and have his yearly check-up with the nephrologist.
Again, we appreciate every single prayer offered for us!
Tuesday, November 17, 2009
Monday, November 16, 2009
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.
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.
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