Wednesday, August 19, 2015

Facebook update from Help Anton

Day +146 I haven't updated about a few tests they have done the past few days so I wanted to be sure I put those results on here. There are also lots of pictures from the past few days. I may have already posted some of them but I can't remember so here they are again. Anton had another ct scan of his sinises, chest, and stomach. Those all looked like they were improving. He had an echo done today of his heart. I'm not sure what the results were from that yet. He had an eye exam to check for infections, his eyes looked great. Norovirus is AWFUL, it is bad for someone with a normal immune system and really bad for someone who is immune compromised. He can be sick for anywhere for 14 to 150 days... Anton has thrown up anywhere from 5 to 25 times everyday for over a week (I have no idea how many times he has diarrhea a day but it's a lot). He is now waking up at night and throwing up which is exhausting. I just try to keep reminding my self that I'm not the one throwing up and Anton is dealing with way more than just having to get up at night. He didn't have anything to eat or drink for the past two weeks(ish) and was still throwing up so they let him start drinking water a few days ago. He finally said he was hungry today so he can also eat if he wants to. Although he just throws it up but he threw up a ton without food too. They are going to put him on an anti nausea drip because nothing else is working. Anton has discovered he has a love for drinking water, Gatorade, and taking his meds by mouth. Yesterday he drank a half a bottle of water, this is a huge deal for a kid who only liked to take sips and not even finish a cup of water before transplant. Today though it was out of control, he was obsessive about drinking water, and very demanding (which he never is) he probably drank two bottles of water today. He was sooo thirsty, like beyond a normal thirst level. I will talk to Tolar about it again tomorrow and see what he says. Kendall has come to check on/ hang out with Anton everyday since Monday. He has even sat with him a few times so I could go run downstairs to get food. We figured out a way for Anton to be able to "chart" from his room using the keyboard that goes to our tv. That way Anton and Kendall can still work together. Every night before Anton goes to bed he makes a list of things he wants to talk to Dr. Tolar about the next day. Most of the things are the same everyday but Dr. Tolar takes time to go through each of them with Anton and they address all of Anton's questions together. It is seriously so cute. Yesterday was a hard day just with the stress of being in and out of the o.r., and worrying about Anton. Things finally settled down around 8pm and i had my first real meal of the day. Anton woke up at 1am throwing up and did off and on till he woke up at 7am (super early for him), then he stayed up throwing up for the rest of the day. I was wiped out. Around 11am someone said they had donuts and coffee in the family resource lounge so Anton's nurse stayed with him while I went down to grab some. I was so excited and couldn't wait to have a donut today (I love donuts). I got down there and they actually weren't having donuts but muffins and I literally almost cried. So bratty I know, I think I was just tired and that was the one thing that almost set off the water works. I held it together and made it back up to the BMT floor but I was pretty grumpy for awhile (so dumb I know). A staff member asked what was wrong so I said it's so dumb but I just really wanted a donut and they had muffins and not donuts and I know that is dumb but I'm sad about a donut... And guess what... That person (who shall remain nameless) delivered a full box of donuts to our room before they left work for the day. It was seriously the sweetest thing ever and put a HUGE smile on my face. The donut I had today was sooooo good and I'm sure I will have more before bed! Meltdown avoided! And word on the street is more donuts are coming tomorrow! It's so strange how there are so many things that should strss me out and make me cry but they don't, then I don't get a donut and I have to fight back the tears for hours. Crazy roller coaster or emotions. I am thankful Dr. Tolar is still on service at the hospital and thankful he is still searching for answers and doing everything he can to help Anton feel better. Praying Anton sleeps better tonight and throws up less tomorrow. - August 19, 2015 at 09:21PM

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