Saturday, March 21, 2015

Facebook update from Help Anton

Day -6 So after my last post things got crazy. Today was literally one of the hardest days of my life. Anton is normally one of the most laid back kids on the planet, he is super happy, normally a very calm and quite child but that has changed since about the second day we were here. A lot of the staff told me that it is totally normal for kids to do that going through bmt but I don't think I was prepared for how much his demeanor has changed since we have been here. The second day we got here Anton started throwing fits where he would scream at the top of his lungs, then hold his breath then turn blue and breathe again. That first day I put him in timeout every time he did it and grounded him from TV but I only did that the first day. There is a team at this hospital that helps kids learn different techniques to work through fear and pain so we started working with them today. I am going to give Anton some time to learn how to express himself correctly then reassess the whole putting him in timeout over it. Hopefully with time he will learn how to express he is scared in other ways and we can all move on. So here is what happened today. Anytime Anton was even just a little bit scared about something he would yell for about 3 seconds then hold his breath for about 30 seconds then pass out, literally his whole face turns blue, his eyes roll back in head, and his whole body goes limp. He did this TWENTY times today. I am not exaggerating literally TWENTY times. He did it no matter who was in the room it could be just us, just us and a nurse, doctors it didn't matter one bit. I was so mentally drained after about 6 hours of this happening I didn't know how I was going to get through the rest of the day. God's grace is so sufficient because I did get through the day I didn't get frustrated and I just tried to help Anton figure out different ways to deal with his emotions. Don't get me wrong though i was stressed out to the max, cried a few times and thankfully was able to go outside for a minute to take a breather. Anton had a swallow study done today to check his airway and to see how well he is swallowing and he passed out two times before we could even load him up to take him then he did it three times while we were in there for the swallow study. One of the times he did it his oxygen levels dropped to the 20s. It was awful! I have no idea how this happened but we were able to get him to calm down enough to get several bites and he actually did a great job. Before today he could have anything thicker than honey but he did so good swallowing he can now have anything thicker than nectar (which is thinner than honey)!!! So excited about that! The nurses and staff were amazing at helping me to help him but they are pretty surprised at how many times Anton has passed out today. Jason, Kenya, and Judah came up for a few hours today and i was pretty worried about Anton passing out while they were here. Before they got here I told Anton he was not allowed to throw any fits because it would scare his brother and sister and he didn't throw any fits while they were here. It was a nice break from our crazy day but also shows that he can control it to a certain extent. After they left we had to do dressing change and it took three and a half hours because his skin was so torn up from thrashing around during his fits. He also passed out a few times during dressing change and threw up some as well :( Overall tody was AWFUL but there were some neat moments as well. I'm so excited for how well Anton swallowed during his swallow study, I'm so excited I got to see Jason, Kenya and Judah. Judah even fell asleep on me, we were blessed with several care packages today thank you to everyone who has sent us stuff words could never express how thankful we are for everything. And to top it all off I know that it would have been impossible to get through this day without Gods help. So I'm thankful for hard days, I'm thankful for days when I think I can't get through one more second because those are the days i can see God being glorified through our trials. When I am afraid, I put my trust in you. Psalm 56:3 - March 21, 2015 at 01:42AM

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