Tuesday, June 30, 2015

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Day +96 Anton did great in the O.R. He got skin biopsies, pictures, and did the blister test (they see how long it will take to make a blister). He also got his central line moved over and the old one taken out. I did a dressing change while he was under. He is back in his room on the BMT floor. via Help Anton http://ift.tt/1dvprnJ June 30, 2015 at 03:48PM

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Kenya and Judah went to siblings camp today with the staff and several kids from Ronald McDonald House. Since all of Anton's O.R. stuff got moved to tomorrow Jason stayed at the hospital with Anton. Taylore, Baby Emerson, and I spent 10 hours today at the Mall of America. We ate, shopped, ate, and watched Jurassic World. Baby Emerson did such a great job and is just the sweetest baby. I got to snuggle her lots and lots today. Tomorrow will be a busy day at the hospital so we are off to bed. - June 30, 2015 at 12:27AM http://ift.tt/1r2lUi4

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Monday, June 29, 2015

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Day +95 They moved all of Anton's O.R. stuff to tomorrow because the surgeon they want to use to place his new central line can't do it until tomorrow. I am totally fine with this plan :) via Help Anton http://ift.tt/1CEq0lM June 29, 2015 at 09:19AM

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Day +94 Taylore and Baby Emerson got here today!!! I am so excited to have them here. Anton will be going in the O.R. tomorrow to have surgery on his man parts, skin biopsies (for his 100 day post transplant tests), and a full dressing change while he is under. I will be going into the O.R. several times tomorrow to unwrap and to rewrap him and I don't feel very prepared. I am a nervous wreck every time I go back there but once it's over I always wonder what I was so worried about. I am very thankful they let me go back there though. Please be praying for our sweet boy tomorrow as there are always risks with going under anesthesia. Thanks! - June 29, 2015 at 12:22AM http://ift.tt/1r2lUi4

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Saturday, June 27, 2015

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Day +93 Blood cultures came back positive out of his purple line today :( he is acting normal though and doesn't have a fever. - June 27, 2015 at 02:13PM http://ift.tt/1r2lUi4

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Day +93 Today is a much better day. Anton's blood cultures are still coming back negative!!! We are trying steroid cream on his man parts in hopes to get the swelling to go down. I'm hoping this works but if it doesn't urology will take care of it in the o.r. on Monday. Anton and I have had fun playing games today and hanging out. WBC 4.6 ANC 4.2 via Help Anton http://ift.tt/1BKkJho June 27, 2015 at 11:13AM

Friday, June 26, 2015

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Good news today! Praising God, Anton blood cultures are coming back normal (meaning they aren't growing bacteria)!!! The antibiotics are doing their job! He is still able to go potty so the plan is to have urology assess and help him while he's under Monday for all of his 100-day post-transplant stuff. Kiira Kinkle Mama brought me some Starbucks today! My best friend since ninth grade will be here Sunday with her newest baby girl and will stay for a few days. I can't wait to see them!! Praising God!!! - June 26, 2015 at 10:50AM http://ift.tt/1r2lUi4

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Thursday, June 25, 2015

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Anton's man part update: The plan is to do nothing for now. They might try an estrogen cream to thin out that skin but I don't think they have decided yet. They only want to do surgery if it fuses all the way closed. I think I'm comfortable with the plan for now. Anton is happy to be eating after a long crazy day. via Help Anton http://ift.tt/1RAOmDA June 25, 2015 at 06:16PM

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Day +91 We found out at 4am Anton has an infection in his blood. This has been one of my biggest fears throughout all of transplant. He isn't acting sick and we caught it quickly so I don't think anyone is stressing too much... He is on some very strong antibiotics to knock it out. The thing I am stressing about (stop reading if you don't want to know about Anton's man parts) is his penis is fusing shut. He got a wound that left a little flap of skin which flipped up and has fused the hole he pees out of almost completely shut. I have no idea what their plan is to fix it. But they know it is urgent. I wish I knew more but I don't. I will keep y'all updated. WBC 5.1 ANC 4.6 - June 25, 2015 at 03:44PM http://ift.tt/1r2lUi4

Wednesday, June 24, 2015

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Day +90 Anton is back in the hospital. We went to clinic and he had a fever of 101.1 and some pretty infected wounds. I think the plan is to keep him here for awhile because there is no way we can add more iv meds at home. I am pretty maxed out with what we are already doing. I will keep y'all updated. - June 24, 2015 at 02:57PM http://ift.tt/1r2lUi4

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Day +90 I can't believe we are 10 days away from being at day +100. It's kind of bittersweet because when we started transplant that day held so much hope. If all goes well it is the day you get to go home, if all goes well it is the day you can take a little sigh of relief, if all goes well day +100 can mean sooooo much... But to be honest for us it is just a number. We are no where near being able to come home. Anton is having more compilations now than he has ever had during his whole transplant.. For the first time since transplant Anton is on TPN (iv nutrition) and completely off g-tube feeds. The good news though is they are letting him still eat by mouth!!! We knew we most likely would be here longer than the 100 days but I still think I was holding out hope that we would be able to go home around then. But we are in it for as long as we have to be to get Anton healthy. For the first time since we have been here I am homesick. I desperately want to figure out a way to go home for a few days but it just isn't happening. I have been thinking about and reminding myself of Proverbs 16:9 all day today. The heart of man plans his way, but the Lord establishes his steps. I can plan and plan but it is God who establishes my steps and I trust his plan for our lives. Some exciting things that happened yesterday (6/23/84, I'm writing this after midnight so it's technically tomorrow). Anton did great on TPN and is back at RMH! We celebrated my 31st birthday by going to chili's, and watching the movie Inside Out as a family. I found out one of my very best friends (Taylore) is coming to visit us with her newest baby girl Emerson!! I got a hilarious package from one of my other best friends (Shannon). Two of my other best friends (Valori and Meghan)(yes I have a lot of best friends...) Did super sweet things for me today to make my day special even though they are worlds away (okay not worlds but states)... I got lots of texts, calls, and messages wishing me a happy birthday. Thanks to everyone who reached out to me, you made a hard day (cause I was sad about not going home anytime soon) a lot more fun! I think that's it :) Somehow this post turned into an all about me post but these are my random thoughts for today:) This is the day that the Lord has made; let us rejoice and be glad in it. Psalm 118:24 - June 24, 2015 at 12:41AM http://ift.tt/1r2lUi4

Monday, June 22, 2015

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Day +88 We switched Anton's formula over the weekend in hopes that his diarrhea would improve but it didn't. They are putting Anton on TPN (nutrition through his iv) for a week starting today. He has never been on it before so they are going to admit him so they can see how he reacts to it. Hopefully it will give his tummy a rest and give the steroids a chance to work. I will keep y'all updated. via Help Anton http://ift.tt/1Lq0Gb3 June 22, 2015 at 02:12PM

Friday, June 19, 2015

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Day +85 We got to go to Minnehaha Falls on a field trip with RMH and we had a blast. Finding a waterfall was literally the only tourist thing I have wanted to do since being here. I'm so glad we got to go. All three of our kids had a blast and we were able to keep Anton out of the sun the whole time! We went to clinic today and got to see Dr. Tolar! We also got to see Kiira Kinkle and Reid Davis Underwood. I love running to our EB friends at clinic! And here is the part we talk more about Anton's poop, feel free to skip over if this is too much information :) Anton stayed diarrhea free for about a day. It is back and totally watery again. The plan is to change Anton's formula over to a formula that is already broken down and to add green beans to it which adds fiber. This should help his stool thicken up without him having to work so hard. We are going to try this for the weekend and if it doesn't work Tolar is going to put him on TPN for a week. This means that all of Anton's Nutrition would come through his IV. And he wouldn't get to eat anything by mouth at all for that week. I am hoping it doesn't come to that but my guess is that is what will happen. He will be devastated if we have to do that. I think that's all I have for now. I hope y'all have a great weekend. - June 19, 2015 at 04:57PM http://ift.tt/1r2lUi4

Wednesday, June 17, 2015

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Day +83 Baby Cole had his bone marrow transplant yesterday and everything went well. You can follow him at Prayers for Cole. We all wore our EB shirts to show our support for that sweet baby boy! The RMH had a lemonade stand today to raise money for the many adventures they will take the kids on this summer. The kids had a blast holding signs and giving people their lemonade. A professional cycling team came to the house today to hang out with the kids and their sponsors provided lunch for the house. It was sooo good! If you don't want to know details about Anton poop skip the next paragraph :) Anton's stool issues weren't improving but I remembered in the hospital it didn't get better until they stopped his tube feeds for 24 hours. I told the doctors this in clinic on Monday but they didn't really say anything either way. Out of desperation and sleep deprivation I decided to give it a try. I withheld Anton's tube feeds for 36 hours (36 ish). I restarted his feeds very slowly last night and I am happy to report he finally didn't wake up in the middle of the night and his poop is back to normal. He went twice today and it was soft but formed. I don't know what it is about withholding feeds but I think it gave his stomach enough of a rest and let the steroids kick in. It doesn't make since but for whatever reason it worked and I am thrilled!!! We went to clinic and got to see Kiira Kinkle!! That baby is sooo cute and she did great today when they placed her central line. I think that's my update for today, y'all have a good night! - June 17, 2015 at 10:35PM http://ift.tt/1r2lUi4

Monday, June 15, 2015

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Day +81 We had clinic today which was long but I was able to get some questions answered about the iv meds I'm giving Anton. I didn't know that his CSA should have been going through his purple line and not his red. The reason is they do blood draws out of the red line and CSA sticks to the line so his levels will come back high even though they could be normal. I was a little frustrated because the nurse who came to teach me how to give Anton CSA didn't tell me this even though i asked if it needed to go through a certain line. I also wanted to make sure I could give his iv meds together because the nurse said it was fine and sure enough a few of them can't be given together. I will be calling them tomorrow because if i wouldn't have thought to ask the pharmacist today I would have been giving him the meds wrong for who knows how long. Anton's diarrhea is still a little out of control so we're trying a few different things with his food to see if it will help. If it doesn't help he will have to go on TPN which is nutrition through his central line and he would have to stop feeds.We are trying very hard to avoid this. Anton's iv infusions start at 6am (I go back to sleep after connecting him) and the last one ends at midnight. I have taken a nap the past two days. Today Anton and I took a nap on the couch together. We got to meet Kiira Kinkle today at the hospital. She is so cute and will be getting her BMT soon. I also got to see Prayers for Cole's parents today. He is back on the BMT floor and will get his transplant tomorrow!! We had a fun night at RMH. A family from RMH had the car club they are a part of bring some classic cars and they cooked an amazing dinner for us. We ate steak and tons of sides! We played with bubbles outside, and then headed to the gym to play with remote control cars. Today was a fun and exhausting day :) - June 15, 2015 at 09:01PM http://ift.tt/1r2lUi4

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