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Its always amazing how fast time moves. The 6 weeks between Bronson’s cath at the end of May and his actual surgery are already a distant memory, and now we are already 6 weeks past surgery and this time has been a blur. Time in the hospital is different than anywhere else, it seems to be moving very slowly and then it’s suddenly gone. These last two weeks have been lots of activity but not a whole lot of fun. There has been some good times and some highlights and lots more bumps and hiccups. After the valve replacement, the melody valve seemed to be doing a good job. Bronson’s revovery has been moving along. He has been eating pretty good, one evening devouring three quarters of a personal pizza, and Tabatha has been making him lots of high calorie treats and snacks. He has started doing physical therapy to try to recover some strength but as of now he’s still very weak from muscle atrophy due to all this time laid up. At least there has been some progress. His poor little stomach has been taking a beating though, extra meds and potassium supliments have been wreaking havoc on him and then he has a hard time keeping food down. He also has been not responding to his diuretics like we have all been expecting. The “heavy hitters” have been doing an ok job of pulling fluid away from his lungs which makes it easy for him to breathe but when they tried to switch to a lighter medication his lungs backed up so they had to give him another iv dose to help out. That was about a week ago, in the subsequent week they tried to just keep him level with the heavy meds which still didn’t keep the fluid clear so he went back on iv dosing which led to going back into another catheter procedure. That was yesterday and in the last 24 hours we have found out that he had an “out flow tract obstruction”. From what we were told the mesh cage that holds the Melody valve in place (I have been comparing it to a chinese finger trap, just a more open weave) is longer than the original valve and so it sticks into the left ventricle a bit. With Bronson’s small ventricle the edge of the cage has been very close to the wall of his ventricle and that is causing a restriction going out to the aortic valve. The fix that they tried yesterday was to expand the whole cage and valve a bit  and also open up one of the “cells” of the weave to try to let some of the blood flow go through there. This is only the second time they have tried to do this kind of repair this way, but then again this is only about the 23rd melody valve that they have put in so there isn’t a whole lot of precedence for it. Will it work? Only time will tell. As for now we are back in the ICU on a ventilator (hopefully coming back out tonight) and we are going to restart recovery again again. Hopefully the 3rd time is the charm.

Oh the lighter sides grandma (“granny Mac” Jeanne McDowell) was here for a week and got some chances to read to Bronson and see him walk too, and play in the activity room in the step-down unit that is known here as 8-east. Tomorrow fellow heart mom Theresa Brakefield volunteered her time to come up from South Carolina for a few days and give us some friendship and comradory. Next week Bronson’s other grandma (“granny D” Rhonda Deines) is coming up here so he is just getting a parade of wonderful people coming to see him. Also, all of the staff have been very good to us (it seems like we’ve been here so long that we’re family). Our surgeon Dr Emani and our cardiologist Dr Tworetski and his nurse practioner Terra, the ICU doctors, nurse practioners, nurses, cardiologists, echo techs, respiratory techs, step down NP’s and nurses, and even staff that have had us with them in the past like Stephanie and especially NP Stefanie Caldwell have been doing a great job of helping us along through this very stressful time. They make it tolerable…and sometimes even enjoyable

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. We are hopeful that this round (round 3) will get us past GO…. ing home!

 

 

 

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