I have handed my son over to surgeons knowing they would stop his heart, and prayed that it would beat again. I have learned more than I ever thought I could. I have cried more than I ever thought possible. I have celebrated victories and milestones that others never have to. I have walked a road I never knew existed. I will walk this road forever. I am a mommy to a CHD Angel ♥ iLy Kayden James

Friday, February 25, 2011

5 steps forward & 10 steps back

It seems like once Kayden gets better and has made so much progress, something happens that knocks him down again & we have to start all over...

Before he got sick this time, he was running around the house playing with all the other kids & he was eating very well. Just the Tuesday before he got sick we had went to Applebee's for Alexis' birthday dinner & Kayden ate like a grown man lol. Then he got sick and was in the hospital 10 days. Now he's still on oxygen & the NG feedings. He seems to only need the oxygen at night still so that's a good thing at least it's not constant and the feedings are for 12 hours so i usually run them from 8pm until 8am...He is feeling much better today! He actually smacked Tavion a couple times LOL no it's not funny because Tavy hates it but that's how I know Kayden feels better because he'll beat up on Tavion! He's also eating more well snacking I guess really. He ate a little dinner last night not much but a couple bites. Today he has been on a popcorn kick and ate probably a total of a whole bag by his self lol!! Well to make Kayden more comfortable & because I don't trust him & Tavion in a room with oxygen running and Kayden hooked to a few things, we have moved his bed into out living room. I really don't even care anymore what people think or say, for now until he is better I've got to make him comfortable & know he is safe. Since we've moved it though he has slept so much better <3 and is more happier!! He missed him own bed =[ lol!! I'm very sad though because through all of this, he has lost all of his hair in the back of his head and the sides. The only hair he has anymore is on top =[!! I don't know what has happened. He did go to the cardiologist today & I asked him about it, he said it could be from laying around so much but he said not all of it, he thinks it may be a vitamin deficiency or he also said when people are chronically ill they lose their hair sometimes..So he said I could try to give him a vitamin everyday & see if it helps him. He was very happy with the way he looked, he looks much better than what he did in the hospital & he said his lungs sounded very good! He didn't hear any arrhythmias so needless to say he's definitely gotten much better than he was a week ago! Now, Boston called me yesterday and said his surgery has been moved up a day which makes it May 11. I mean really 1 freaking day? WOW. So anyways, Kayden's cardiologist called them today and talked to Dr. Marx (card in Boston) and told him what has been going on and was telling him how worried he is about Kayden, so Dr. Marx is going to talk to Dr. Del Nido & go over the schedules with him and see if they can get Kayden's surgery in at the end of March or sometime in April. So keep your fingers crossed that this happens!! Also I want to thank you all for the prayers you are sending his way, they are much appreciated & very much needed!! My family & I certainly appreciate all the love we're getting for our little warrior! Kayden has a lot of determination & stubbornness in him so he'll keep fighting until he makes it through this battle <3 i love my little man
Kayden February 24, 2011
Kayden February 25, 2011

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