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.
23 comments:
So glad that you both got some rest. Continued prayers for your precious boy.
I'm so glad you were able to get some rest and that Courtney and her Mom are there to help you. I know that must bring joy to their hearts too. I'll be praying that Jonah feels better soon and for Anton's surgery.
Shannon
Praying for him and for all of you! That is SO special that Courtney and Anita got to fly in!! Courtney is practically an EB expert! I'm sure it made her heart happy!
xo,
A
Vanessa, you are a very brave woman and you are doing great things not only to your family and Anton in particular, but also to everyone glued to your blog. We all pray for you and ask all our friends for more prayers. We pray that Anton gets well soon and lives a VERY long healthy life! It is great that Courtney was able to join/help you. Her story has touched so many hearts, we wish her best things in life. I am sure she is earger to help you with all the knowledge she posseses about EB. Good luck and please keep us posted!
(I emailef you a couple of days ago - whenever you need any help - just let me know..)
Sending prayers your way. So happy to see Courtney and her mom there with you. They are truly amazing women, much like you.
Praying for Anton. But sooo glad to see Courtney and her mom came to visit you! God bless Courtney and her mom..they are the most wonderful people. It brought tears to my eyes to see Courtney with Anton....so sweet. They are amazing people!!
Thank you for updating us during this tough time! Anton is in good hands with his new wonderful family and extended EB family!!!
- Ellen
Bless his heart (and yours!). Praying for the doctors and nurses, and wisdom for everyone. I pray peace for sweet Anton in all of these huge recent changes, and for the family as well. I pray joy for your other 2 kiddos as I'm sure they miss Mommy and Anton, and are ready for things to settle out. My thoughts are with you!
Thank you so much for the update! I'm so thankful Courtney & her mom were able to come and help you out...What an exhausting time for you all. I'm still praying for you and that sweet baby.
p.s. Yaay for on-the-spot Chick Fil-A!
I have followed Courtney's blog for a while and found you throug her. Courtney & her mom are truly amazing for coming to help so soon after their own loss. I hope Anton's tube surgery goes well. He is so lucky to have been able to come live with you!
Praying for your sweet angel! Praise God that Courtney and Anita could come and help! I know it's hard for them, but they have SO much knowledge, so it will be really good to have them with you. Praying that everything continues to go smoothly - God is in control!
Love,
Laura
Praying for your sweet angel! Praise God that Courtney and Anita could come and help! I know it's hard for them, but they have SO much knowledge, so it will be really good to have them with you. Praying that everything continues to go smoothly - God is in control!
Love,
Laura
Thinking of you guys! I am so glad you have such a great EB support system. Thank you for keeping us updated.
Prayers headed your way...What a sweet sweet boy.
I am blessed to hear updates on your journey with Anton. We have been praying since we first heard of him!! I am also so very grateful that Courtney and her mom were able to fly in and give you some hearts and hands to help. We will keep praying here in St. Louis! Thanks for posting!!
Do not give up, Antosha, fight! You a brave and Steadfast , you're a winner! We believe in you! Love of your family will make a miracle! Our hearts and our love is always with you!
Praying for your precious baby boy and your entire family!
Hi, to Courtney and her mom! What a treat to see you here. Anton couldn't be in better hands with a loving mommy and her VERY experienced friends. I hope Anton's g-tube can be placed soon and he stabilizes so that he can go home. It's so relieving to hear that his heart is just fine!
Praise God that Courtney and her mom are there! I am sure she will be such a tremendous help to you and I know Courtney will get so much out of it too. This will help her heart in more ways than we could ever imagine. I am praying for all of you guys.
I am going to sign as anonymous but it I am chinamoon1420@aol.com. in tennessee. It is easier to sign as anonymous....long story....
love to all of you!
Seeing Courtney and her mom with Anton brought tears to my eyes, too...what a gift, to have them there. And it's really a gift from Tripp, too...what a blessing from God!!
I'm continuing to lift you all up in prayer...
Praying in Houston,
Kellye
Wow! Courtney and Anita are there with you! I'm very happy to see Tripp's Mom and Grammy giving support to you. It's great! Love you all!!! God bless you!
Praying for Antosha
Kisses and love from Verona
So glad that Anton is getting the help he needs, and that you have Courtney and her Mom there to help. It must do their hearts good.
I hardly ever comment, but I have followed Courtney's blog for a long time, and I've prayed for Anton since I first saw him on a link to a video. We are so glad he has you all as forever family.
Praying for your sweet family and Anton. So glad that Courtney is there with you. It is so nice to see a smile on her beautiful face again.
You truly are a saint. Anton touched a lot of people's lives, and we all wish him well. I am happy he has you in his life.
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