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Day +183 Anton talked quite a bit today and overall had a pretty good day. Anton's tempture went above 103 twice today which was a bit frustrating but I'm hoping it was just random. He will be going in the o.r. on Tuesday for skin biopsies, bone marrow biopsy, and to get a gj tube instead of a g-tube. When Anton's nurse Rachael brings ice she always says ice delivery. Anton loves it because it reminds him of his favorite movie frozen. Today the NP asked Anton if she could bring him ice and he said "no, only Rachael can". It was so funny. He just played with this ice today which was so cute to watch. I'm shocked he liked playing with it because it was of course wet and cold and he hates both of those things. Thank you to everyone who has sent food to the hospital. We have loved it and are so so thankful!!! I think that's it. - September 25, 2015 at 09:05PM http://ift.tt/1r2lUi4

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Day +176 Anton's tempture is still remaining under 102 and has even gotten down to 99 degrees at times! I have stayed at the Ronald McDonald House the past two nights just in case I was sick. Thankfully I'm not so I will be trading off with Jason again later on this evening. They had a parents night out last night at RMH so Jason and I enjoyed a yummy meal with some friends while Kenya and Judah were entertained with the rest of the kids. There is a family here from Poland and one of their daughters will be getting a bone marrow transplant for EB soon. Kenya and her sister have become good friends and don't let the language barrier stop them from having fun. They got matching face paint yesterday and both had fun giggling and trying to scare their other friends., I will post a link to her sisters FB page once I'm on my computer (I can't figure out how to do it on my phone). Anton is still on high flow oxygen. The high flow oxygen in neat because they can adjust the amount of oxygen Anton is receiving and the pressure separately. Anton is on room air (meaning he isn't needing oxygen to keep his stats up) he is still on 10 liters to help open up his lungs though. So they are giving him room air at a high volume to force his lungs to stay open. I'm not sure what the plan for Anton is besides hoping bactrim is the cause of the fevers. I know he is going in the o.r. next week for his 6 month post transplant biopsies and his bone marrow biopsy. For now we are just thankful that his fevers are lower! I will keep y'all updated! - September 24, 2015 at 09:16AM http://ift.tt/1r2lUi4

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Day +174 Anton was very sleepy today. This is how his day went. Slept Did school Slept Watched a cartoon Slept Saw Kendall Slept Changed wraps Slept Jason said he was pretty sleepy the past few days too. But the good news is his fevers haven't been over 102 degrees in the last few days. Jason worked from the hospital today because the internet wasn't working at RMH. It was fun having him there with us. I felt like I was getting sick so after dressong change I switched off with Jason, he is staying at the hospital and I am at RMH. Praying Anton's fevers stay don't and his pneumonia clears up so he can get off of the high flow oxygen. - September 22, 2015 at 10:38PM http://ift.tt/1r2lUi4

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Day +173 I got back to the hospital around 6:30pm go trade off with Jason. As soon as we got here Anton sat up and was happy to see us. His personality came back tonight and it filled my heart with joy to see Anton playing, talking, laughing, and having fun. I can't remember the last time I got to have a conversation with my sweet boy so tonight was a real treat. Anton got to chart with Kendall in his room and he was just so talkative! Kendall's favorite team is the Vikings so I got Anton a shirt so he could match Kendall. He was so excited to show Kendall his shirt and they are planning on matching tomorrow :) I did dressing change tonight and Anton's skin looks so much better than it did two days ago. Anton's tempture has been much lower the past few days than it has been in a while. I think taking the bactrim away and putting him on the antifungal antibiotics has helped a ton. I can't think of anything else but I will keep y'all posted. That's all I can think of for tonight :) - September 21, 2015 at 11:41PM http://ift.tt/1r2lUi4

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Day +179 My sweet, amazing, handsome husband that I love oh so much has stayed at the hospital with Anton these past few days so Kelly, Mandy, Shannon, and I could have a girls weekend. My Mom and Step Dad flew in for a few days too and watched Kenya and Judah so is girls got a hotel. We have had a blast and although I didn't think I really needed a break I have come to realize nothing can replace amazing life long friendships and some good old staying up till 3:30am crying my eyes out with my bffs was just what I needed. I got to go to church yesterday with Jason, Kenya, and Judah yesterday while Kelly stayed with Anton. The girls and I took Kenya and Judah to the Mall of America yesterday where we all had fun spending time together, shopping, and riding one of the rides. Kelly, Shannon, and Mandy all leave today which I am so sad about but we are going to have fun with the few hours we have left together (after they all wake up, ha!!!). Anton had a ct scan done yesterday which showed he has viral pneumonia and atelectasis (parts of his lungs are stuck together almost like a collosped lung). They added antifungal antibiotics. Anton's tempture had been lower the past two days. I'm not getting too excited yet but I am hopeful. He has also been talking and playing more which is so exciting to see. I have missed his little personality soooo much. The doctors and nurses at the University of Minnesota Masonic Children's Hospital have all been amazing and gone above and beyond to not only care for Anton's physical needs but also always ask how we are doing. I am so thankful for our team and couldn't be happier with the care Anton is receiving! I will keep y'all - September 21, 2015 at 11:13AM http://ift.tt/1r2lUi4

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Day +177 Anton got transfered back to the BMT floor yesterday afternoon. He is still on high flow oxygen and is still throwing up several times a day. He will have a CT scan done today to check for infection. Dr. Wagner also said he has a high level of something (I can't remember the name) showing that he is having an allergic reaction to one of his meds. He said bactrim would be the one he would think was causing it so they took him off of that and out him back on pentamidine. He is hoping that is the cause of the fevers (which are now getting over 105 everyday). They are also running a ton of blood work to check for other sources. They are checking to see if he has an antibody that is attacking his collagen 7. They are being very aggressive in trying to find a source of infection. They are also going to do a bone marrow biopsy next week. Jason stayed with Anton last night, Momo and Gramps stayed with Kenya and Judah, Kelly, Mandy, Shannon, and I are staying at a hotel. I'm going to the hospital in a bit for the ct scan then back to my girls weekend. I will keep y'all updated. - September 19, 2015 at 12:00PM http://ift.tt/1r2lUi4

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Everything went well with the scope. The GI doctor said he thinks I was right about where the blood came from. Anton had several spots in his throat that were raw and looked like a freshly popped blister. That explains where the blood came from when he threw up. He said everything else looked great. He send several biopsies off to test for graft versus host disease and we will hopefully have those results soon. Several of my bffs will be here this weekend and I can't wait to hang with them. Jason will stay at the hospital with Anton. Momo and Gramps are flying in to see us and to watch Kenya, and Judah so we can have a girls weekend. I'm pretty sure the plan is for Anton to be released from the ICU tonight so he will be back on the BMT floor. I would difently not be leaving him if he wasn't stable but he is doing really well considering everything that is going on. via Help Anton http://ift.tt/1NI4ZQy September 18, 2015 at 10:28AM

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Day +176 Anton is having a scope of his stomach done as we speak in his ICU room. I'm so gald he didn't have to go to the o.r. I was in there when they were putting him to sleep and he was being hilarious. He was pretending to be a power ranger while trying to pop bubbles. It took an insane amount of propofol, and katamine to put him to sleep. It shouldn't take long to do the scope. They are checking for graft versus host disease in a stomach as well as any strictures. We should be going back to the BMT floor tonight as long as his breathing stays stable. - September 18, 2015 at 08:43AM http://ift.tt/1r2lUi4

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Day +175 Jason and I both stayed the night (well I guess it was night/morning) at the hosptial. I couldn't sleep so I have been awake since yesterday morning (well in actually think I slept for about 20 minutes last night). I will have to take a picture of rounds tomorrow morning because it is insane how many doctors, pharmacist, and medical staff are involved when someone is in the ICU. I didn't want to go in the halls at first to be a part of rounds because it was a lot of people but I finally went out there and I was glad I did. I got to hear everyone's plans and I even got to talk a little. Dr. Wagner is on service for BMT right now which I am so excited about. He is one of the EB specialists and is just a great doctor. I got to talk to him about Anton's skin and he shared with me some different theories he had about why his skin is seeming more fraigle lately (not a lot more just a little more). He also thinks Anton might have gvh and that is why he has fevers. They will do a GI scope tomorrow in Anton's room to get biopsies and tests for graft versus host disease. They have been able to turn Anton's oxygen down from 65% oxygen to 45% oxygen, they also turned the pressure from 12 liters to 8 and he is tolerating that nicely. He only has trouble when we change his diaper, or if he throws up but he always recovers after a few minutes. Anton didn't wake up until around 11:30am and he was in the best mood and was happy as could be. It was fun to get to have a conversation with him again. We did dressing change around 12:30pm, Dr. Wagner, and Dr. Will were both in here for that so they could see his skin. He fell asleep again around 1:30pm and slept until 6pm, he is back asleep at 7:30pm and I'm sure will be asleep for the night. I'm about to crash out too. Anton being in the ICU isn't a complication of transplant but a direct result of him throwing up then aspraiting on it. Him throwing up blood unfortunately is part of his having EB. He is affected internally as well as externally so he most likely got a blister in his throat and once it popped he threw up blood. He got a blood transfusion today. He is still stable but not out of the woods yet. Sorry if none if that made since I'm soooooo tired. - September 17, 2015 at 07:38PM http://ift.tt/1r2lUi4

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Day +175 Anton was transfered to the pediatric intensive care unit. Just wanted to let y'all know before you start reading this post Anton is in stable condition. Last night around 11pm Anton started throwing up while he was flat on his back sleeping, he threw up quite a bit before I could get to him. Once I got to him, I sat him up and he started throwing up blood, and blood was pouring out of his nose. I called the nurse (Natalie, awesome nurse) who ran in there, she got the charge nurse (Kendall, Anton's BFF), and the doctor (Kate, who we love). He threw up quite a bit of blood but stopped as quickly as he started. We had a shift change right after this and our new nurse Jenny was a rock star and took such great care of Anton. Once Anton was done throwing up and we got his wraps changed Anton looked at Kendall and said "can you read me a bedtime story please?" It was the sweetest thing ever and of course Kendall read to him. Kate ordered platelets (Anton's first ever platelet transfusion), tons of bloodwork, an X-ray of his chest, and she stayed in the room to watch him closely. Within about 20 minutes Anton was breathing around 100 breaths a minute and was having a hard time breathing on his own. His oxygen levels were in the low 90s and dropping. They put him on oxygen in the room but as time went on he was needing more and more help. They called respiratory therapy who came in and put Anton on high flow oxygen. He ended up maxing out the support they could give him on the BMT floor and still needed help breathing. I had been calling and texting Jason to keep him updated throughout all of this. I also asked Jenny (our nurse) to let me know when it was time to start stressing. It was at this point in the night when his oxygen levels were dropping and not recovering that she said okay it's time to start worrying, this is also when they told me to call Jason to come up to the hosptial. A friend at RMH let Kenya and Judah stay the night in their room and Jason stayed the night at the hosptial with me. Anton was stating (oxygen) in the mid to high 80s and was not recovering, this is when they started talking about intabaiting him. Anton finally got stable around 5am (remember all of this started at 11pm, so we were going on 6 hours of craizness) actually right before we left the room to come to the picu his oxygen levels were looking better. The next step if he didn't stabilize was going to be to intubate him. I am so thankful it didn't come to that. It is still a possiably (if he starts struggling again and not recovering) but Anton has done better on the high flow oxygen since around 5am. They dropped him down to 10 liters of oxygen this morning and he is still doing good. I am so thankful we were in the hospital when all of this happened. He might not have made it if we had been outpatient. God is faithful and even in the darkest, hardest, and scariest of places he is ever present. I was completely calm the whole time (I did cry a little when I called Jason and said they might intubate him). I just did what had to be done to take care of Anton and didn't think too much about what was actually happening. I am so thankful for our BMT and PICU team, they all did an amazing job with Anton! Anton will be in the PICU ( pediatric intensive care unit) for at least one day (could end up being more) so they can watch his breathing and make sure he isn't getting worse. He is stable though so I'm thankful for that as well! I will keep y'all updated. - September 17, 2015 at 09:19AM http://ift.tt/1r2lUi4

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