Good Times Delgado Style: August 2015

Monday, August 31, 2015

Facebook update from Help Anton

Day +158 Anton is back in his room on the BMT floor. He is always pretty grumpy after being in the o.r. so I'm guessing we will just hang and watch cartoons for the rest of the day. They were able to place his central line but tore up some skin by his neck. I'm a little frustrated because this was one of the areas that closed after transplant and hadn't reopened. The lumbar puncture went well, she was able to get it on the first try and got 7 mls of fluid. Hoping to get a better picture of what is going on after we get some results back. - August 31, 2015 at 03:24PM http://ift.tt/1r2lUi4

Facebook update from Help Anton

Day +158 Anton is back to not feeling good :( He had a tempture of 102.9 before he went in the o.r. and he is just so sleepy today. Anton is in the o.r. now. I was able to go back there while they put him to sleep. He is getting his new central line then they will do the lumbar puncture. I will update this post as I get updates. - August 31, 2015 at 01:14PM http://ift.tt/1r2lUi4

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Facebook update from Help Anton

Day +158 Day 45 of this hospital stay Yesterday was one of our favorite nurses last days on the BMT floor. Allie is going to be a BMT nurse coordinator and we are sooo excited for her but will miss her on the floor. Anton continues to be happy and playful throughout the day which is so exciting to see. He also continues to spike high fevers, yesterday it got back up to 104. We have received some very sweet care packages lately! Thank you guys for the kindness you have shown our family!!! The most exciting news is... Anton no longer has norovirus so he can go in the halls and we even got to take him outside yesterday!!! We got to hang out with Prayers For Abigail Updates and Catt's family the last few days which has been so neat! Today Anton will go in the o.r. to take out his picc line and put in a central line. He will also be having a lumbar puncture done to check for infections in his spinal fluid and the fluid around his brain. I am always so nervous about him going in the o.r. but I'm so thankful for this hospital. They are so gentle with him and have never had to intubate him. I will update throughout the day. - August 31, 2015 at 09:35AM http://ift.tt/1r2lUi4

Friday, August 28, 2015

Facebook update [pic] from Help Anton

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Facebook update from Help Anton

Day +155 Dr. Tolar came in bright and early to check on Anton and go over the plan with me. They are going to take out his picc line and replace it on Monday, they are also going to do the lumbar puncture on Monday. Dr. Tolar is in clinic on Fridays so I took Wita over to meet him! We ran into Kiira Kinkle and Baby Cat! There is an instant bond between EB families and it brings me such great joy to be at a hospital where it is normal to run into another EB family!!! Anton woke up this morning and was back to his happy little self. Wita stayed with Anton so I could go spend some time with Jason, Kenya, and Judah at RMH. I stayed there most of the day and am back at the hospital now. Much to my surprise Anton had a great day and was back to his normal happy little self (besides high fevers) all day long!!! So exciting!!! Hoping tomorrow is another good day! #helpanton #causethewave #cureeb #tolarsturtles - August 28, 2015 at 06:22PM http://ift.tt/1r2lUi4

Thursday, August 27, 2015

Facebook update [pic] from Help Anton

Day +154 Anton isn't going to the o.r. today for a lumbar puncture because they found out last night he has another blood infection. They don't want to introduce any bacteria in his spine so we will temperately hold off on the lumbar puncture until his blood infection is gone. His tempture is 104.4 right now... he is so so sick :( via Help Anton http://ift.tt/1MQilbz August 27, 2015 at 09:31AM

Wednesday, August 26, 2015

Facebook update [pic] from Help Anton

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Facebook update [pic] from Help Anton

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Facebook update from Help Anton

Day +153 Sweet little Anton seems to be getting more and more sick. His tempture is spiking more often during the day and he is pretty miserable for most of the day. He has about two bursts of energy a day where he feels well enough to play but other than that he is laying in bed watching cartoons and being super still. Anton's tempture spikes around 104 at least once a day and gets anywhere from 102 to 104 at least three times a day. He is throwing up more and is just feeling yucky. Besides norovirus there aren't any active infections they can find so tomorrow they are going to do a lumbar puncture in the o.r. to check for meningitis. He is stable but so so sick. - August 26, 2015 at 09:26PM http://ift.tt/1r2lUi4

Tuesday, August 25, 2015

Facebook update from Help Anton

Day +151 We got the results back from Anton's engraftment studies today. They look at his blood and at his skin biopsies and see how many cells are Anton's and how many are his donors. I am happy to report that Anton's blood is still 100% donor, meaning all of the cells he is making are his donors not his. At his 100 day post transplant study his skin was 13% donor and it is now 51% donor!!! That means that 51% of the DNA in Anton's skin is his donors not his. This is mind blowing!!! They do a blister test to see how long it takes to make a blister. This is a good way to see how fraigle the skin is and to see if it is getting tougher after transplant. His test before transplant and the one done at 100 days post transplant both took 6 minutes to make a blister but the test for his 6 month post transplant studies took seven and a half minutes!!! This is a HUGE deal. I knew his skin was tougher but to have lab tests to prove it is just so exciting!!! Anton's skin has changed so much! His left leg isn't wrapped at all. His chest is only wrapped a tiny bit. I can pick him up on his bare skin with gloves on and his skin stays intact. He hasn't gotten a blister in weeks, like literally NO blisters. He has only had two new tiny wounds in the past several months. I know that sounds hard to believe but I'm telling you guys this kids skin is sooo much stronger. The best way to describe it is it seems like he now has a less severe form of EB. We are so thankful that Anton had the bone marrow transplant it has changed his life so much already. All the other issues he is dealing with are just from being immune compromised. In time his body will fight off these viruses he has and then we can bust outta here :) Papa T and Wita are in town and we are so excited to get to spend some time with them. I have also gotten to have a few breaks while Wita stayed with Anton. Papt T and Wita brought us some very sweet treats from home. The Haltom City Fire Department signed a card for Anton. I was in tears reading Anton what his buddies the firefighters wrote in his card. Thank you guys! We can't wait to come back home so we can visit again!!! Then I got some fudge from Ruby's shop Fudge N More in El Paso!!! Thanks Ruby! Anton also got a sweet little play pac from her. Papa T and Wita also brought Anton a little lunch box stuffed with goodies. Anton got to see Kendall today, they did some more charting in the room and Anton showed Kendall how he can cut with his table top scissors. After dressing change Kendall came back in the room and read Anton a bed time story (cutest thing ever) then Anton read Kendall his Pete the Cat book. For about 15 minutes tonight Anton was back to being silly and had us cracking up. I can't wait until he has the energy to be silly and playful all the time again. One day at a time. I'm so thankful Dr. Tolar and his team have worked so hard to make the bone marrow transplant an option for people with EB. It isn't a cure but it is such an improvement in Anton's quality of life. They have given our family such a gift that we could never repay! Praising God for such great results thus far with transplant!!! For from him and through him and to him are all things. To him be glory forever. Amen. Romans 11:36 - August 25, 2015 at 12:05AM http://ift.tt/1r2lUi4

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Monday, August 31, 2015

Friday, August 28, 2015

Thursday, August 27, 2015

Wednesday, August 26, 2015

Tuesday, August 25, 2015