IMG_20140901_115800_577I just noticed that it has been 3 & 1/2 weeks since our last update here on our 2 month (so far) journey. We have been dealing with a lot in the moments that then seem like not worth reporting because of the dissapointing results. We have been in and out of the ICU a total of 7 times now. They have been almost all due to fluid overload in Bronson’s lungs. We had a barium swallow study a few weeks ago that showed us that he had been aspirating every time that he had anything to drink ( the study had him sit in front of an x-ray while swallowing different consistancy fluids that have been laced with barrium that will show up on the moving screen). In order to combat the continual breathing of fluid the recommendation was to go to “honey thick” for all his fluids which is just about the consistency of pudding. It has helped the aspiration but seemed to slow his appetite down. It helped the fluid balance with his lungs a bit since now the only build up was in the tissue and not in the air sacs themselves. More recently we discovered that he wasn’t handling the attempts at transitioning him from iv diuretics to oral and that one of them was at a pretty low dose that needed to be increased a bunch. (Before this surgery at home he had been on a maintenance of diuretics that was the same dose as the smallest adult dose.) All these things have been conspiring against us to land us where we are currently. Yesterday he had another little surgery that they compared to a body piercing. Let me explain, no that would take to long, let me sum up. For 2 months now Bronson has been nutritionally deficient and so has lost a lot of weight. Our little man is really a “little” man! We have been fighting tooth and nail to but some weight back onto him but loosing the fight

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. To help us in this fight for his life today he got a G tube. It is called a mickey button and will let us feed him through the night while he sleeps. The recommended daily calories for him were set at 900 to 1000. In four days that included this last weekend he ate an average of 1000 per day, and lost weight every day. The G tube should allow us to augment him to the tune of about 500 extra a day. Hopefully that will be enough to get some muscle mass back on him and get us out of here before winter comes around.
On another note, thank you all for your amazingly kind generosity. It makes us feel very loved that everybody wants to do something to help us. The bumps in recovery we kind of expected but the total disconnect from our regular daily lives is a very difficult thing that I hope none of you ever have to go through in this way. The go fund me account that Mike Deines set up for us is almost to the goal and we have talked about it a bit. If it ends up over we have decided to put that extra money to good use and donate it to a heart defect organization. We already have a few in mind but we’ll see more about that if it happens. I have asked a couple people already, but please reshare the link to who ever you can and maybe we could go over the top. It is . Thank you all again.

Sorry there’s no pictures again. We’ll try to get some up soon

Love you all!

Eric, Tabatha, and Bronson

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