10-17-11, 10:18 PM | #26 |
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Well, Easton is still in the PICU, but he is getting better day by day now. I was there this weekend to see him and to bring my wife back home. She was there all of last week. Easton still has the ventilator tube to help him breathe. The main reason he needs that is because they need him to gain as much weight as possible and for him to get a little bigger. The ventilator reduces the amount that his body has to work so his caloric intake can mostly go to putting weight on. He has been gaining an average of one ounce per day. He is still on a feeding tube that they give him mothers milk through along with a high calorie booster. They plan to remove the ventilator at the end of this week to see how he does without it. If that goes smooth, they will also remove the feeding tube a few days later and let him start to nurse regularly. If both of those things are successful, he will be able to leave the PICU and move to a regular room for a couple of weeks just to be sure he doesn't have any relapses. After that, he should be able to come home. I promised everyone that I would get some new pictures up. I had hoped to get some with his eyes open , but they had him on a mild sedative this week because he is not happy about the tube and trys to pull at it all the time now. You will see in this picture that he has a hat thats a little to big for him yet. This is a very special hat. You may remember that about 6 weeks before Easton was due, we went to Children's Mercy for a meeting with doctors about the condition he was diagnosed with. At that time we already knew that he had di George syndrome and that he only had the one main heart artery. We had been told that this was repairable with 95% success rates and we were there to get the final tests and update from the cardiologists. We got in town the evening before the appointment and we went to the Olatha Bass Pro Shops do some shopping. While I was in the fishing section, Brittney found this hat in the gift section. She bought it and showed it to me when we left the store. The next day we had a bombshell dropped on us that Eastons heart now looked a lot worse and they didn't think he would survive. That was the worse day of my life so far. The 3 hour drive home that afternoon felt like an eternity. The hat got put up in Eastons baby room and I didn't think he would ever wear it. Well, I don't know if the doctors were just wrong, or if they underestimated Eastons will to live, or if all of our prayers were answered with a gift from God. I think the last two were it though. The doctors were right about what the last echo had shown, but Easton kept hanging on longer than they thought he could and they had time to do the surgery that saved him. So anyway. sorry for the long winded story about the hat, but Easton did get to wear it and one day it will fit him perfect. I will get a picture of that time also when he is in the boat with his own fishing pole and ready to catch some bass. I also got a picture of Easton with his teddy bear that Kory and Britney got him. He loves his bear.
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10-17-11, 10:25 PM | #27 |
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Awesome pics, Kevin! Thanks so much for the update.
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10-17-11, 10:34 PM | #28 |
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Thanks Kevin for the uplifting update and story. Personally, I think the hat fits perfectly right now. I can't wait to one day see the pic of him wearing that hat while fishing with Grandpa. Love the picture of him snuggled with his teddy bear. It' is so great Kory and Britney were able to visit you all and leave such a special gift for such a special little boy. I'll continue to keep Easton in my prayers. God Bless.
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10-17-11, 11:02 PM | #29 |
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Love the pictures Kevin. And still praying for Easton and all of you guys.
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10-18-11, 06:26 AM | #30 |
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like the hat great to hear he is doing so well.cannot wait for the fishing pictures.i
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10-18-11, 09:25 AM | #31 |
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It sounds like Easton is in very good hands. He obviously has a fire in his belly to stay here. My continued wishes and prayers go with him and your family.
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10-18-11, 11:31 AM | #32 |
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That is great news Kevin. I was getting ready to go to facebook and send Brittney a message asking about Easton once I got done playing on bassfishin.com, now I don't have to lol. I am so glad to hear that he is starting to pack on some weight. Hopefully you all can get the little fella home sooner than later. Prayers continued.
Oh and I am glad he likes his Teddy Bear.
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10-18-11, 06:55 PM | #33 |
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That's awesome news Kevin! So happy to hear he's doing well, looking forward to the pics with him fishin!
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10-18-11, 07:56 PM | #34 |
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The best news I've heard all day!
I'm still praying for little Easton and Family. Thanks for sharing with us. -Mark |
10-18-11, 10:10 PM | #35 |
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sorry i am late kevin. but there is a tear of JOY as i type this. this is truly wonderful news. GOD'S hand is guiding the doctors i am sure. we will ocntinue to pray of easton as he fights. we are ALL here with you guys, praying and i think he is a str0ong fella and he is gonna win. can't wait myself to see him in a few short years helping oyu fix reels and fishing. thanks for the pics kevin........again.....AWESUM!!!
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11-19-11, 10:14 AM | #36 |
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It's been a while since i posted an update. each time that I thought we had some news, we would get different news the next day. here is the latest that we know.
Once again, thanks to everyone for your prayers and support. Easton turned 2 months old on the 14th. He is still in intensive care. He was about 2 weeks old when he had his first heart surgery, the last 6 to 7 weeks has been a roller coaster of ups and downs. He had several weeks where he was steadily improving, but then there were some setbacks. The surgery had gone so well that the doctors thought he might be out of the ICU in just a few weeks and might have been home by now. The first time they tried to remove his vent tube, he did OK for a couple of days but then his numbers dropped and his heart went into failure. They had to re intubate him and got him stabilized again. At the time, they hoped that his heart was just to weak and his lungs to small and believed that if they waited until he was several weeks older and had grown a bit that they could try again. During that time he has been gaining weight, but then he got a staph infection, probably from the vent tube and hospital germs. They got that under control and then they started noticing blood in his stools. They did several tests and scans over a couple of weeks and decided that he might be lactose intolerant so they stopped feeding him breast milk and went to a formula without lactose. During that time they were not able to feed him so he lost weight again. The said he couldn't have food until they knew what was causing it. At about this same time they knew that they had to get ready to try and remove the vent. Long term vents cause several problems including lung infections and injured vocal cords. This time, they decided to turn it down just a tiny bit each day. They hoped this would force his lungs and heart to work harder at a slower pace and help them to get strong. He was doing very good with that until this week. As they got almost to the point that it was off, he started struggling again, so they turned it back up some. Now, they also are still having trouble with his feeding and decided that maybe it wasn't lactose after all so they decided to do several more tests including a cath to his heart to look around. They found this week that he actually has a bad case of acid reflux. This was the cause of the bleeding and they will now go back to his moms milk, but with meds to control the acid for now. The heart cath showed that his right side of his heart is working good but the left is still very week. This has shown them that he has to have help breathing on a long term basis. They are now scheduling him to get a tracheotomy where they will install a semi permanent tube in his throat and he will have a portable breathing machine. He will need this at least until he is old enough and big enough for the 2nd heart surgery that they hope will repair everything. He will not be ready for that until he is at least one year old or one and a half years old. He may need the trach for up to a year or longer after that though, because his lungs will be used to the machine breathing for him and it will have to learn to do that without help and that can be a long process. When they do this trach surgery, they are also going to install a G tube which is a feeding tube into his stomach that bypasses everything so that food doesn't have to be digested as much and his heart doesn't have to use extra energy to help in the digestion of food. That will also help on the acid reflux as his stomach will be tied shut at the top. All of this may happen next week or right after the holiday weekend. My wife and I wish that we could be with him and our Daughter all the time, but we have other children and work obligations that don't allow us to be there. We hope to be able to go see him next weekend before the surgery. If they decide to do it sooner, we will go right away. As allways, the cost of transportation and lodging is a major obstacle when added to the fact that we took on all of our daughters expenses so that she could live there at the hospital. The Ronald McDonald house has been wonderful for her as she gets to live there next to the hospital and gets a couple of meals a day from charity groups that bring food for all the families there. If you have a little extra cash, toss it the box at McDonald's. You can't even imagine the good it does. |
11-19-11, 10:51 AM | #37 |
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Thankyou for the update Kevin. My prayers will continue for little Easton. He is a real fighter. Next time I'm at Mc Donals I'll be sure to donate. It's a great cause as one can see here. I hope and pray the little guy gets stronger day by day. God bless.
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11-19-11, 11:23 AM | #38 |
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I know that you already have, but take a moment to read and say out loud Mathew 18:19
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11-19-11, 11:50 AM | #39 |
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wishing you the best and will keep easton in my thoughts.
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11-19-11, 11:54 AM | #40 |
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Praying...
Thanks for keeping us up to date, Kevin. -Mark |
11-19-11, 02:09 PM | #41 |
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Thanks everyone. I forgot to mention it in this last update, but we were told that with this long term tracheotomy, Easton won't be able to learn to talk until it's removed and then it may take a long time after that. We were told that we all need to enroll in a sign language class so that we will be able to communicate with him. I hope they really can teach an old dog new tricks, because the only sign i know is the one we use when an idiot cuts us off in traffic.
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11-19-11, 03:17 PM | #42 |
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Easton's quite a champ! Looks better every update. My prayers are with Easton as well as your whole family. The hats a perfect fit!
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11-19-11, 07:04 PM | #43 |
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just like everyone else here kevin, lisa and i are praying for BIG EASTON buddy. GOD knows the fight he has and is helping him.
thanks for the update pal. please keep us as updated as oyu can.
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11-20-11, 03:09 AM | #44 |
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Kevin, I have been talking with Brittney on facebook quite a bit and she is keeping me up to date with what all is going on with the little fella. I know that the last few weeks hasn't yielded much news that you all were too happy to hear but at the same time it sounds like for the most part he is still improving. You know that you, Charlene, Brittney, or Kyle can holler at us if there is ever anything that we can do or if you guys just need to talk or vent. You all are in our prayers daily and will stay there as long as needed buddy.
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11-20-11, 10:50 AM | #45 |
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Great to hear the little guy is still full of fight. In just a few years he will not remember any of this, and we will all be looking at pics of him and Grandpa fishing.
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11-20-11, 11:07 PM | #46 |
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Don't teach him that sign any time soon. lol. Prayers and thoughts conveyed.
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11-23-11, 04:28 PM | #47 |
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More bad news, Easton started having seizures today, they don't know why. I am getting ready to head that way now.
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11-23-11, 04:45 PM | #48 |
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Prayers being sent
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11-23-11, 05:16 PM | #49 |
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Prayers sent Kevin. Give Brittney and Kyle a hug from Britney and I.
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11-23-11, 08:20 PM | #50 |
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Kevin, my thoughts and prayers are with you.
-Mark |
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