~The Speth Family~: Bad news

Monday, March 18, 2013

Bad news

I need to update. The cord to charge my computer died and then the battery in the laptop exploded. I am hoping to have it all fixed by next week at which point I will dump a bunch of pictures on here and let you know what we have been up to :) But for tonight I am borrowing John's work computer...

Sometimes I feel like we are the bad news bears :) If somethig can go wrong, it does :) But we always make it out with our heads in tact, so that's something....

I took Ammon to see Dr. Puchalski today. it was a bummer. Oh don't worry his heart function is actually quite good! But he has developed PLE (Protein Losing Enteropathy) which is a rare side effect of the Fontan surgery that he had last October (it only effects 5-10% of the kids who have the surgery). I won't go into too many details right now, but basically his body loses protein in his stools and, because of the way they bind, the calcium goes with it. The only cure for the disease is heart transplant, but since transplant's create a long list of gigantic obstacle's in and of themselves, the best option is to maintain Ammon using other methods. We are going to start relatively simply - diuretics to control the edema, insane amounts of aldactone for metabolics, and we feed him as much protein as we possibly can, plus lots of MCTs to try to get his body to absorb some of the protein. Basically if he eats, it needs to have protein in it and if you are going to give him a treat, make it a yummy protein bar or protein shake.

Some kids can live for years with this condition, and some can't. We will have to see how Ammon handles it. Puchalski said its basically our first step toward needing a transplant. Hopefully his little body can handle it for a few (or many?) years :)

As usual, John and I were prepared for the news before we went to the cardiologist. Even though we had no physical proof (symptoms are limited), we have both felt for some time that something was wrong with Ammon. I am always reminded of Elder Scott's comment that our days are numbered and I feel comforted that Heavenly Father is in control. John and I were able to go to the temple last Friday and ponder on Ammon's condition (which was weird seeing as how we didn't know what was wrong with him). Sometimes the reality of just how big Ammon's mountain is, really just stinks. However, I am always so grateful for each year we get to spend with him. He is such an important part of our family - he does us so much good just by being here with us! Its good to be reminded of that every now and again :)

2 comments:

UnknownMarch 19, 2013 at 7:27 AM
You guys are in my prayers all the time. Look into the protein content of chia seeds and hulled hemp. Their plant-based protein are off the charts - and they are packed witj lots of other nutrients as well.
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John and SuziMarch 24, 2013 at 5:22 PM
wow - thank you!
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