Ethan has been at Children's for 2 weeks. His congestion and cold symptoms are starting to subside. But his heart is working so hard that he is in heart failure. They are managing those symptoms with lots of medications. He has lost interest in eating and they tell me it's all apart of his heart condition. He is getting so tired most of the time. When he is awake is is so happy, talks and tells lots of stories, he is very active. The nurses say they're going to get him a trampoline!
We are taking his all one day at a time but he is only going to get worse and he needs to have surgery. But he needs to get over this cold. It sounds like he is just going to be in the hospital until its time for surgery. He is still on a little bit of oxygen and requiring the NG for tube feedings. He is also of breathing treatment and require suctioning around the clock. When he gets upset which is rare, his oxygen levels drop extremely low. He gets wore out with just sponging him off during a bath, actually just during 10 minutes of just trying to get him to take a bottle :(
I don't think anyone could have prepared me for how mentally exhausted I feel. I pray to God and I pray everyday to take these struggles away from Ethan. I know he is looking out for us because I feel his presence and the power of prayer from everyone! He is such a lucky boy to be loved by so many!
We are so blessed!
Tuesday, December 11, 2012
Saturday, December 8, 2012
Team Ethan Benefit was a SUCCESS!
Yep that is right! Team Ethan's benefit was a success last night. We could not be any happier. We had such an amazing turnout. This has taken a huge weight off Matthew and I shoulders. We are so blessed to have all of you in our life. So thankful for all the love and support for baby Ethan. Everyone has been praying for us. It was so comforting to hear other moms talking to their little ones and hearing their prayers for Ethan!
A HUGE THANK YOU to Dalene Campbell for putting this all together for us in just a couple weeks. Thank you to her Pastor for allowing her to have the benefit in their church. I wish I could individually thank each and everyone of you who helped with donations, raffle, volunteering, and praying for our family!!!
We had 135 guests attend the benefit!!! After today our grand total was over $5,000!!! Such a blessing to know all the family and friends we have rooting for our little man. God is SO good!
Thank you all so much from the bottom of our heart :)
A HUGE THANK YOU to Dalene Campbell for putting this all together for us in just a couple weeks. Thank you to her Pastor for allowing her to have the benefit in their church. I wish I could individually thank each and everyone of you who helped with donations, raffle, volunteering, and praying for our family!!!
We had 135 guests attend the benefit!!! After today our grand total was over $5,000!!! Such a blessing to know all the family and friends we have rooting for our little man. God is SO good!
Thank you all so much from the bottom of our heart :)
Tuesday, December 4, 2012
Update from Children's
Ethan has been at children's for 8 days now. We have certainly had our share of ups and downs. He is truly doing so much better. Cooing, smiling, and playing with everyone that walks in the door. This cold is just down right nasty!!!!!! After 5 days of IV steroids and every 4 hour breathing treatments, I finally think he out of the clear going to the ICU. He is still getting breathing treatments around the clock every 4 hours and suctioning.
Now another issue exits, his oxygen levels are dropping to the 50's when he goes to sleep. A new physician is on this week. She was ok with his oxygen levels in the 60's "because most heart babies are lower 75-85% when they're awake, so 60's is acceptable." I waited a few seconds... NOPE I'm not ok with that!!!! Ethan's oxygen levels baseline are 85-95%. Why would it be ok all of a sudden sick or not for him to hang out in the 60's?! I want to know WHY he is dropping that low. After 4 weeks in and out of the hospital. I know my son's numbers. Sleep apnea? Doesn't appear that way to me. They are consulting an ENT to evaluate. Down syndrome babies have low muscle tone, they wonder if he is obstructing his airway. I personally think it's this virus running it's course. They are also repeating an echo of his heart to see if he has worsening heart failure. He has been showing signs of heart failure since he was 3 weeks old. They change his meds a bit, it gets better, change them again, gets a little better.
All and all Ethan needs to have the AV canal repaired like now!! But they have to wait until he is better, now it's another 4-6wks, so January! Nothing like fighting off all bugs in the middle of winter?!?!
So the plan now is to get this figured out and have him out of here by Friday!!! So blessed to have such great care by the nurses here. I've gotten to know all of them and they are now our family!
Now another issue exits, his oxygen levels are dropping to the 50's when he goes to sleep. A new physician is on this week. She was ok with his oxygen levels in the 60's "because most heart babies are lower 75-85% when they're awake, so 60's is acceptable." I waited a few seconds... NOPE I'm not ok with that!!!! Ethan's oxygen levels baseline are 85-95%. Why would it be ok all of a sudden sick or not for him to hang out in the 60's?! I want to know WHY he is dropping that low. After 4 weeks in and out of the hospital. I know my son's numbers. Sleep apnea? Doesn't appear that way to me. They are consulting an ENT to evaluate. Down syndrome babies have low muscle tone, they wonder if he is obstructing his airway. I personally think it's this virus running it's course. They are also repeating an echo of his heart to see if he has worsening heart failure. He has been showing signs of heart failure since he was 3 weeks old. They change his meds a bit, it gets better, change them again, gets a little better.
All and all Ethan needs to have the AV canal repaired like now!! But they have to wait until he is better, now it's another 4-6wks, so January! Nothing like fighting off all bugs in the middle of winter?!?!
So the plan now is to get this figured out and have him out of here by Friday!!! So blessed to have such great care by the nurses here. I've gotten to know all of them and they are now our family!
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