The upper GI has been done; now we are waiting on the surgery. It should be done today; we have seen so many of the surgery team that I can't imagine they wouldn't do it. We are at a little bit of a standstill right because of some blood work. They want to make sure his blood is clotting correctly before surgery; unfortunately he has been stuck so much that there is no place left to draw from. They have even called in the pedi transport team to look and there weren't able to find anything either.
The nurse from the Butterfly Network (children's hospice) should be by in an hour or so to meet with us and get that established. We should also meet the doctor from the CHOSEN clinic when he does rounds....unless Eli is in surgery. We will hopefully get an appointment soon to go to the clinic since we had to miss the one we had this morning. I'm pretty worried about Eli. He seems to be getting much worse and the SMA symptoms more and more pronounced. I want to get him home so we can take some time to enjoy him.
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4 comments:
Poor Eli:( It looks like they could get all the blood drawn at once so he doesn't have to get poked so much. Keep us posted. Love you guys!
Brandi
Glad that the hospital stay has improved. Hope that you're all resting when possible. All of your family here would like to say thanks for the help given to you all from your co-workers and friends. It's what we would like to be doing for you. Our thoughts are with you 24/7 and updates are relayed to all family members here. We LOVE you.
Rita, poor lil Eli! How is he holding up with all these pokes? Hoepfully the surgery goes well, so you can get yourselves home, and let him enjoy his time at home, with all his familiar things around him!! We are all thinking about you! I am so glad to read about the support you have, and how well you are being taken care of. You definitly are an amazing person who attracts such caring friends. You are so strong!! All your MSN girls are following the blog and keeping you in our thoughts and prayers for some wonderful months ahead. Give Eli a big hug from us, and hang in there hun! Krista
I just wanted to give you a hug and let you know I am reading the updates. You are not alone...
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