We are home!

Sorry I didn't update more it was hard with the hospital's Internet only working when it wanted to.

After our 18 day stay at the hospital we are finally home. Overall it was a great stay and I didn't go stir crazy too much. If I got overwhelmed I just tried to remind myself that there were children in that hospital fighting for their lives and we had so much to be thankful for. Now don't get me wrong there were times that were really hard and I had to have some cry fests but overall it wasn't that bad.

I have lots of cute pictures and lots of stories that I can't wait to post but it will just have to wait because I'm tired and my brain needs a reboot.

love you all!

Anton is doing Great!

Anton is doing great!

They were able to place his central line without any problems (well other than the fact they couldn't really secure it). Once he got back up to the room Jason, two nurses and myself all brain stormed and figured out a way to secure it a little better. Hopefully it will stay in for the rest of our hospital stay.

The staff here has been amazing and have (for the most part) done a great job of listening to my dos and do nots for EB. I am the only one who takes his temp., moves him, changes his diaper and every nurse that comes in has to ask me before they do anything, even at night. I'm pretty tired at this point but it's worth it to keep Anton safe.

Now don't get me wrong the staff here is amazing and I have grown very close with some of them, it's just hard because they are use to doing things one way and they just can't do the things they normally do with Anton. So I just stay on top of it. All of the nurses have been very eager to learn about Anton's skin and several of them have personal experience taking care of an EB kid. I can't say enough how much I love this hospital and love the staff.

Anton hasn't had a fever in two days and his infections are looking amazing!!' I'm not sure how much longer we will have to stay but hopefully we will be going home soon. I miss Jason, Kenya and Judah a TON and I can't wait till we're back together in our house. I can't complain though because every time I do I am flooded with the thought that right now in this hospital there are many, many kids fighting for their lives. We have so much to be thankful for and I hope we never forget. If you guys could be praying for a friend of two of my friends, their son went to be with Jesus yesterday. My heart breaks for their family.

I was able to take Anton outside for the first time yesterday and he LOVED it. It is finally cooling off in Texas and I'm pretty sure we will be playing outside everyday. I can't think of anything else to say except thank you all for loving and praying for our boy! God is so faithful and is so so good to us no matter what!

updates

Anton woke up very grumpy today and wouldn't open his eyes. He stayed grumpy most of the day. Anton's midline was leaking a ton today so we had to take it out and he will be going into surgery tomorrow to have a central line placed. Anton has been home for six months today!!! Well I'm tired, sorry for the lame post. Goodnight.

Anton is in the Hospital

It's amazing how fast things can change.

September 6th Anton had a great day. We had a very special visitor come all the way from Russia to meet him. We laughed and played and had a great time. September 7th I took Anton to the GI because he was having some issues with feeding. She put him on new meds to help his stomach empty a little faster (he was throwing up cause his stomach was holding the food in too long.) That night he had a fever of 102 and wasn't feeling well at all.

September 8th Anton wouldn't open his eyes and cried most of the day.

September 9th Anton still wasn't feeling all that great so Anton and I stayed home from church. At about 4pm I noticed Anton was feeling warm so I took him temperature and it was 104. I packed a bag and we went straight to the ER and have been in the hospital every since.

September 10th his second IV infiltrated and there was no where else they could put one. So they gave him antibiotics through his g-tube hoping they would clear up his infection and we could avoid getting a PICC line. 

September 11th they checked to see if the infection was in his blood and praise God it wasn't.

September 12th Anton's fever broke and his infections were looking a lot better, they were even saying we might get to go home. Then his fever hit 103 again and I knew we were staying.

September 13th his infections were clearing up and he was doing awesome until about 3pm and he went down hill fast. He was in a ton of pian and was thrashing around and couldn't keep still it hurt so bad. He woke up all night screaming even though we were giving him pain meds around the clock. I have never before seen anyone in as much pain as he was in. He wouldn't even let me hold him because it hurt him too much.

September 14th same thing, he was in tons of pain no matter how many meds we gave him. There is nothing like seeing your child in pain and knowing you can't fix it.

September 15th Anton had the biggest poo of his life and was back to his happy little self. Anton went into the O.R. to have a PICC line placed but they couldn't get it in as far as they wanted so he ended up getting a Midline, which is in between an IV and PICC line. The antibiotics they were giving him through his g-tube weren't strong enough so he had to have IV antibiotics.

September 16th Anton was pretty fussy today but overall it was a good day. I went outside today for the first time in five days and I couldn't believe how nice it felt outside!!! Jason and the kids came to see us and a few friends from church. I miss my family but I'm just trying to enjoy my time with Anton. God has always been so faithful to us and we will continue to praise His name. Sorry I didn't update sooner but the Internet hasn't been working very well at the hospital. I am back on Facebook (it's a long story) so you can follow us there or I will try to update on here as much as I can.