Update on Anton

Yesterday was so busy and I was exhausted because I had only slept for one hour the night before. They hospital is taking everything very slow to make sure the do things the right way. All the nurses and doctors are willing to listen to us and so far we have had a great stay. The hospital has a Chick-Fil-A that is open till midnight... oh the joy that brings to me. Ha!  

Anton had a study done to look at his stomach and check for reflux. He does have a little bit of reflux and they also found that his stomach is not in the right spot. I think they said it's transverse. I'm not sure what they are going to do about it but it is a good thing they found it before they put the g-tube in. 

Then he had an ECHO done to look at his heart. We were told in Russia that his heart is slightly malformed, but PRAISE GOD his heart is totally normal!

He is being fed through an NG Tube that goes from his nose to his stomach. There is a picture of it below. We put transfer on his face (EB safe bandage) then taped the NG Tube to the transfer. He can't have any tape on his skin at all so the IV came out once and the NG Tube has been pulled out twice. That is the only bad part of waiting for surgery is I am always having to make sure he is not pulling on his tubes because they are not really attached to him. 

 

Anton had a much better day yesterday, he wasn't fussy and even played a little bit. 

 Courtney and her Mom Anita flew in yesterday to help me and I am SOOOO glad they are here! They said I'm doing a great job but it is so nice to have them here to help me in dealing with the doctors and teaching a ton about day to day care with EB. We tried to get Patrice here too but Jonah might be sick so it was a no go :( We wish you were here Patrice! 

They tried all day to win him over and finally by the end of night it worked!  I was able to go take a shower while they played with him. 

We did Anton's dressing change yesterday and he was in so much pain the hospital gave him a pain killer.

After his bath he crashed out and slept by me in his stroller all night. I was finally able to get some sleep too and I feel very refreshed today.

The thing by his mouth is not a breathing tube but the feeding tube that is in his nose.

We still don't know when he will have surgery. They are thinking it will be sometime next week so we will be in the hospital until then.

Love you all and thank you guys so much for all the prayers, love, and support they mean the world to us! We know that God is sovereign over all of this and we are so thankful Anton will be getting a G-Tube soon so he can get the nutrition that he needs.