Friday, August 7, 2015

Facebook update [pic] from Help Anton

Day +134 I just have to start again by saying how thankful I am that Dr. Tolar is on service this week. Anton woke up this morning and started throwing up. He threw up a few times and then didn't throw up for the rest of the day. I could tell he felt awful. His nurse asked if he wanted a Dorito and he told her no. His very favorite things to do is hold random food so for him to tell her no was a big deal. The team came in today and I already had Anton unwrapped because I wanted Tolar to see Anton's knee. As soon as Dr. Tolar walked in Anton told him his stomach hurt. So Dr. Tolar got right by Anton and asked what else hurt. So Anton told him everything that hurt. Dr. Tolar told Anton how important Anton was in all of this and that he would be sure to listen to anything that was hurting or different. He is so sweet and so compassionate when he talks to him. All of Anton's major tests came back normal. He doesn't have any blood clots in his lungs. He does still have a little bit of pneumonia so be is going to do breathing treatments there times a day. His stomach has improved since the last ct. He didn't see anything on any of the scans or echo to be concerned with. Anton has a little bit of fluid in his knee that I was concert about so Dr. Tolar checked it out. He said he didn't think was infected but he just has extra fluid there from where his skin was healing. Then he said Anton's fever curve was getting better so he was encouraged and hoping that they had gotten the right does of antibiotics. I told him I didn't think his fever curve was better because he spiked at 104.8 yesterday. Then I started crying. If you know me in real life you would know I'm not a crier. It take a lot to make me cry. In fact this is the first time i have cried regarding Anton's transplant. (I have cried a lot since Cole passed away, i miss him so much!) I was telling him how frustrated I was that Anton has had a fever for the past 20 out of 21 days with no answers. I dont want anything to be wrong with him but it's so hard not knowing what is wrong with him. Dr. Tolar said he was still concerned and was going to keep trying to find answers he was just encouraged that the fever curve got better through the night. A few hours after the doctors left the room Anton's temp went back up to 104. He took a long nap and then woke up around 6pm. He woke up happy and very playful. A family from Texas called me today and wanted some advice about their newborn with EB. I don't know all the details but I know Baby Chris is fighting for his life in the hospital. I snapped out of my sad mood and went into Mama Bear mode trying to help them help that sweet baby. If y'all could be praying for him I would love that. There are a two kids that have been transferred from the BMT floor to the ICU. They are both having trouble breathing and could also use your prayers. Prayers for Colton is one, and here is the link to Aarons caring bridge We got to Skype with Jonah, Patrice, Gideon, and Matt. It was so great to see them. Patrice is kinda like Anton's other mother. She advocated for his adoption, fundraised to bring him home, trained me on how to do wraps, and flew to Texas after he came home to help me while he was in the hospital. She loves our boy something fierce. And I feel the same about her kiddos! Gabriella brought me a case of bottled water and some yummy meals from Trader Joes. It's so neat how close the EB community is. Thank you Gabriella, love you guys!!! Going to bed with a heavy heart but resting because God is sovereign over all and I can rest in Him! via Help Anton August 07, 2015 at 10:31PM

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