Tuesday, December 29, 2015

Anton Ezekiel Delgado 1/16/10-12/15/15

We had our FB page set to update this blog but for some reason it stopped working. I am going to quickly catch you guys up but if you want more details check out Anton's FB page:

 https://www.facebook.com/Help-Anton-142880872427136/?ref=tn_tnmn

We found out on November 27th through a CT scan of Anton's stomach that he had intussusception. The most basic way I can explain it is part of his colon went into his intestines which went into his stomach and it all got twisted up. This was not a complication from EB or BMT it is just a random thing that happened. They tried to do an enema with contrast using a live x-ray to fix the problem but it perforated (made a hole) so they had to stop.

The next step was to do a very risky surgery to repair the damage and he would come out of it with an ostomy bag. The BMT team, and surgeons were very clear with us and let us know that if we chose to do the surgery they weren't expecting Anton to survive.

We decided to do the surgery and give him the best chance we could. The surgery took about an hour and the surgeon was  able to remove his colon, half of his large intestines and put everything back together. Anton didn't need an ostomy bag afterall. He was in the picu on a ventilator for several days. It was a scary few days but he was able to be extubated and we moved back to the BMT floor. I can't remember how many days he was in the PICU.

We found out on December 10th that where they had put Anton's intestines back together had opened up on the inside and all of his stool and other fluids was spilling out into the area outside the intestines. His incision has started opening on his skin as well and he had stool coming out from his stomach. There was nothing else they could do to help our sweet boy.

God graciously gave us 5 days to love on and spoil Anton before he went to be with Jesus. We even got to have an early Christmas with him!



Anton went to be with Jesus on December 15, 2015 at 6:15 pm. We are heartbroken but so thankful for Anton's life, we miss him more than we could ever express with words but are so thankful we got to be his parents.

Here is the link to a beautiful slideshow Jason made for Anton's funeral.
https://www.youtube.com/watch?v=dL-Q-PUkmLU

For from him and through him and to him are all things. To him be glory forever. Amen. Romans 11:36


Wednesday, December 2, 2015

Facebook update [pic] from Help Anton


via Help Anton http://ift.tt/1NHUhdH December 02, 2015 at 12:55PM

Facebook update [pic] from Help Anton


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Facebook update [pic] from Help Anton


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Facebook update [pic] from Help Anton


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Facebook update [pic] from Help Anton


via Help Anton http://ift.tt/1XHBSNw December 02, 2015 at 12:55PM

Facebook update from Help Anton

Anton continues to amaze everyone with how well he is doing. He should be totally weaned off of his vent today then they will take it out tomorrow. They are also going to start feeds tomorrow at a very slow rate. We are just praising God for how well Anton is doing and so so thankful for the medical staff caring for Anton. - December 02, 2015 at 12:55PM http://ift.tt/1r2lUi4

Tuesday, December 1, 2015

Facebook update [pic] from Help Anton


Good news, Anton is tolerating less and less support from his vent and he could be weaned off in a few days! I know so much can change but we are making baby steps in the right direction. The surgeons got an xray of anton's stomach today to check for free air (air outside of his stomach where it shouldn't be) and they didn't see any. They also said if he spikes a fever again tomorrow they will get a CT of his stomach to check for infection. Today seems to be ending on a better note. :) via Help Anton http://ift.tt/1YGkCuA December 01, 2015 at 08:58PM

Facebook update from Help Anton

This kid is the toughest person I know. He had a high fever today, dressing change, and overall not an easy day. Kendall came to see him and he perked right up. He responded to Kendall's questions, and even charted with him a little bit. I loved seeing how happy Anton was with Kendall in the room! We also got to see a few of our BMT doctors and nurses! I LOVE it when our team comes in! If Anton gets a high fever again tomorrow they will do a CT of his stomach to make sure he doesn't have a large infection in there. Otherwise he will remain on his IV antibiotics and they will watch him closely. They are weaning off of his vent and he is tolerating it well. I can't wait until it comes out and we get to hear his voice again. I'm not exactly sure when this will happen but we are working toward it. He is still critically stable but overall doing better than everyone thought he would be doing. - December 01, 2015 at 05:33PM http://ift.tt/1r2lUi4

Facebook update [pic] from Help Anton


via Help Anton http://ift.tt/1SvnkiF December 01, 2015 at 05:33PM

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Facebook update [pic] from Help Anton


After Anton's fever broke yesterday we were both able to get some rest. I was hoping yesterday was just a random fever but Anton just spiked a fever for 104.4. He is resting more comfortably today so I am thankful for that. His vent is growing gram rods, the BMT team isn't sure if it is infected or if it is just the normal bacteria on his skin that the are picking up. Either way they will treat with IV antibiotics. I will keep yall updated. via Help Anton http://ift.tt/1RjQpiE December 01, 2015 at 11:43AM

Facebook update [pic] from Help Anton


via Help Anton http://ift.tt/1Pqw24b December 01, 2015 at 01:55AM

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Facebook update [pic] from Help Anton


via Help Anton http://ift.tt/1Pqw3F4 December 01, 2015 at 01:55AM

Facebook update from Help Anton

We got to see Kendall tonight!!! I can't even put into words how great it is to have our BMT team checking on us. They are just the best! It's little crazy how fast things can change in the ICU. Anton went from having no fever to having a temp of 103.3, it took about 3 hours for it to come down. I was literally freaking out. His temperature spiked, his eyes were rolling back in his head, he was breathing funny, his skin was bright red, and his cheeks were growing right before our eyes. The ICU doctor came in but I didn't feel like he was being aggressive enough so I asked him to call the BMT doctors, and to call the surgeon. The surgeon came in and got an xray of anton's chest, and stomach which is exactly what I wanted to happen. He said that he didn't see any free air, which was good. He also said that if Anton had a small leak they wouldn't do anything except treat with antibiotics since it was so soon after surgery and everything was still so swollen in there. He also said they were checking for sources of infection (checking blood, vent, and urine). I can't remember what all he said but I do remember I felt 100 times better about everything after he left. For one of the xrays they were talking about Anton sitting up which they weren't going to make him do but he has asked to sit up since yesterday so I said let's do it. Anton was so happy he got to sit up. He stayed sitting up for about 15 minutes and did great! After that he was exhausted but he fever broke and he went right to sleep. Now we wait for cultures to come back so they can treat whatever is going on. I was truly scared there for a few hours but am so thankful he seems to be doing better and so thankful I had a friend with me that was a second set of eyes. Anton is resting comfortably so I'm going to go to sleep and hope for an uneventful rest of the night. - December 01, 2015 at 01:55AM http://ift.tt/1r2lUi4

Monday, November 30, 2015

Facebook update from Help Anton

Today continued to be a good day. Anton was awake more and seemed to be enjoying all of his visitors. I got to see my sweet buddy Charlie today and his awesome Mama Trisha! My sister stayed downstairs and hung out with Charlie so that Trisha could come see Anton. I am so glad they were able to stop by. Charlie has had two bone marrow transplants and is doing so good. I had a pretty interesting conversation with Charlie about anton's leg pain and he explained to me why that happens and what it feels like when it happens to him. I was blown away by how well Charlie explained things. I love that kid! I also got to see some of our BMT family today and I was so thankful to get to spend some time with them. Anton will wake up and shake his head yes or no to answer questions. He is able to point to his stomach or knee if they hurt and is calm when he is awake. They keep weaning down on his vent settings and he is tolerating that! We have had several people from our BMT team come to check on us which I have loved. Having their support makes this process so much easier. We got to see Dr. Tolar today which I was so excited about . He was very happy to see how well Anton is doing. Blair Welsh went to the Ronald McDonald House today to hang out with the school kids. Kenya and Judah told him how much Anton loves The Vikings so he autographed a picture for Anton. Anton got pretty excited about the picture so we hung it on his TV. Anton has been wearing his Vikings hat and most of the doctors and nurses ask if he is a fan so he shakes his head yes. Then I tell them that Anton is BFF's with Sullivan, and Rudolph and he starts shaking his head yes. Cutest thing ever! So far he only gets excited when we talk about The Vikings or Power Rangers. So thankful for how well he is doing. - November 30, 2015 at 07:42PM http://ift.tt/1r2lUi4

Facebook update [pic] from Help Anton


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Facebook update [pic] from Help Anton


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Facebook update [pic] from Help Anton


via Help Anton http://ift.tt/1l2yq4u November 30, 2015 at 11:35AM

Facebook update from Help Anton

Hello everyone :) I probably won't post a ton today because Anton is actually doing really good! He has been awake and calm for most of the day. They are lowering the support that the vent is giving him and he is tolerating it well. And it is SNOWING!!! We are so excited about the snow. - November 30, 2015 at 11:35AM http://ift.tt/1r2lUi4

Facebook update [pic] from Help Anton


via Help Anton http://ift.tt/1MQirzn November 30, 2015 at 09:19AM

Facebook update [pic] from Help Anton


We had a nice and uneventful night! I slept from about 8pm until 6am and feel much better. They were able to go down on anton's Peep (the pressure air is going through the vent) from 15 to 13. Everyone has told me he is already doing much better today than yesterday. The surgeon came in to check on and look at his incision, he said it looks great. I literally couldn't believe it when I saw it. It is just a perfect straight like with no damage to his skin. It is healing so quickly too which is a miracle because none of his wounds are healing right now. He said we aren't out of the woods yet but he is very pleased. Anton started pooping yesterday which is a HUGE deal since he hadn't popped since Tuesday night and he had half of his large intestines & colon taken out. They might start feeds today at a very small rate. The surgeon said they like to do this early on to help his gut start working again. Anton is breathing on his own when he is awake and still totally dependant on the vent when he is sedated. They want him sedated and not working to breathe so that his lungs can continue to heal. Praising God for all the progress that Anton has made. For from him and through him and to him are all things. To him be glory forever. Amen. Romans 11:36 via Help Anton http://ift.tt/1Iv9Cqo November 30, 2015 at 07:00AM

Sunday, November 29, 2015

Facebook update [pic] from Help Anton


via Help Anton http://ift.tt/1PVbqkv November 29, 2015 at 06:44PM

Facebook update [pic] from Help Anton


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via Help Anton http://ift.tt/1Tm84ph November 29, 2015 at 06:43PM

Facebook update [pic] from Help Anton


via Help Anton http://ift.tt/1Ito16v November 29, 2015 at 06:43PM

Facebook update from Help Anton

Busy day today. Most of the day has been spent balancing Anton's sedation meds so that he is asleep enough not to fight the vent but not so sleepy that his heart rate, and O2 drops. He also has an ultrasound of his lungs to check for fluid and there wasn't very much fluid around his lungs. We did a dressing change and it was awful. He was clearly in pain even though we gave him enough meds to knock out a horse. It took him a really long time to recover after dressing change too. His O2, heart rate , and breathing were all worse during and once we were done with his wraps. Tomorrow when we do dressing change one of the ICU doctors will be in here so they can make sure he is comfortable. The saddest thing ever is watching your child on a vent trying to cry but not being able to. He has only done this twice but both times it broke my heart. We have had a good day visiting with family, and our good friends Justin (Anton's popcorn buddy), and Barbara came to see us. A few people have asked how I'm doing and honestly I am tired (okay exhausted) but emotionally I'm feeling fine. I tend to not stress out about super major scary things that happen and then overly worry about small things that don't matter. I'm going to sleep early so this should be the last update for the night :) - November 29, 2015 at 06:43PM http://ift.tt/1r2lUi4

Facebook update [pic] from Help Anton


via Help Anton http://ift.tt/1Ito16v November 29, 2015 at 06:43PM

Facebook update from Help Anton

They didn't end up putting Anton on the oscillating vent because he was finally able to recover. His O2 saturations are 97% and he is on 50% oxygen and 15 peep. He is not breathing on his own anymore though, the vent is doing all the breathing for him. They have no idea why he was having such a hard time breathing and it could still get worse. The surgeon came by to look at his incision and to change the dressing, he said it looked great and was healing nicely. When you are in the ICU they do rounds in the hall in front of each child's room. There are ICU doctors, pharmacist, nurses, our BMT doctors, respiratory therapist, and I'm not sure who else. It is so intimidating going out there because there are so many people but it is also really neat to listen to them talk about Anton and come up with a plan for his care. My little sister went back home today but my big sister is still here as well as Jason's parents. They just did an ultrasound of his lungs and he doesn't have very much fluid on them which is great. I will keep yall update. - November 29, 2015 at 11:05AM http://ift.tt/1r2lUi4

Facebook update [pic] from Help Anton


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