Archive for August, 2014

Time Flies When You’re Having…. (round three)

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

 

 

 

A new tune

Just a quick blurb tonight. I posted last nights update from in the ICU after B being moved in the middle of the night. I woke up to Dr Emani knocking on the wall by the bed space. He, very somberly, said he belived that Bronson’s mitral valve was to blame for the problems he was having and that he wanted to replace it with a new expandable valve called the “MELODY valve”. We had known that the valve repair with his last surgery was temporary at best, maybe buying us up to a year before it would need to be replaced. It was 8am when he woke me up and wanted Bronson for the 900 case. I told him to go ahead and set it up because tabatha already had the expectation that the valve would need to be replaced in about 3 weeks. She was half a week off its means that she wasn’t right (hahha). The surgery went very well. Bronson was on bypass for only about 2 hours. When Dr Emani met with us after leaving the post op he had a pep in his step and a grin on his face showing the confidence of a well performed surgery. As of about 6 o’clock Bronson was resting comfortably and holding great numbers. The pressures in both of his atria are showing in the seven or eight area down from the high teens after the last surgery. The plan is to start waking him back up tomorrow and the expectation is that his recovery from this surgery should be a lot quicker than the last one. We’ll keep you as updated as we can but for now this has been a very hectic 24 hours so good night everybody.

Moving on down, but not out, and back again

We are out of the ICU and into the step down unit as of Sunday afternoon August 3rd. We got into our new digs at about 1pm, a double size room all to ourselves and then he took almost a 4 hour nap. All good the first night. I (E) stayed that night and as the night nurse was in and out of our room she was weaning B’s oxygen from the 2 liters an hour that we moved with all the way down to 1/4 liter an hour. Waking through the night a couple times I saw that his oxygen levels were great (98 – 100%) and his heart rate was slowing down appropriately (112 pbm down from around 150 in the ICU). He ended up sleeping about 10 hours through the night which was the best sleep he had gotten since we got to Boston. In the morning the day nurse tried to pull the oxygen completely but after Bronson de-satted (o2 levels reduced alot) the consensus was that it was a little early to remove that support completely so they left the nose cannula in place. As the day went on Bronson did ok but not a lot better than that. Ate some food, drank some water, statistically stabilized,  but all  less than his last day in ICU.  Monday evening wasn’t great but we have already recognized that Bronson is fed up with being here and nurses and doctors touching him and listening to him and all the rest that is going along with still being inpatient,  so we weren’t too concerned. Monday night was Tabatha’s turn to stay and through the night she noticed B’s o2 levels dropping again and made sure that the nurses turned up the level,  but he kept dropping. Tuesday he was getting more oxygen but his levels were still declining. He got more and more but his body wasn’t keeping up with it. The decision was finally made to give him a transfusion to elevate his red blood cells which should make oxygen delivery in the body easier. As the transfusion was going along, as it should have been easier for him, it was getting harder and harder. Getting 2 liters of o2 his sats (oxygen saturation levels) kept falling, eventually below 90. The nurse got a few doctors involved, one thing led to another…..I’m finishing this post from in the ICU again. Bronson is back on bi-pap breathing support and also back on iv diuretics to clear all the fluid from around his lungs which have been making it tougher for him to breath. I’m at a loss for any good way to wrap this up, but I suppose that we had expected to have a few bumps,  just not huge ruts in the middle of our relatively smooth ride.