For the medical part of the update: First and foremost of concern over the past few weeks has been the mechanical operation of the VAD. Fishers artificial heart is a Berlin heart and it is exposed outside of his body. There are two cannulas that come out of his chest and then the Berlin. There is a drive line connecting his Berlin to a computer and pumping mechanism. Two weekends ago, the team seemed to start taking his VAD alarms very seriously. The director came in and took down his dressing to see where he was kinking when Fisher would sit up and especially when he leaned forward. He decided to change the way we did Fishers dressing so that his inflow and outflow cannulas were raised higher. A couple of days later they cut the dressing to expose his outflow cannula, so that we could see if it was kinking. It became obvious that they were concerned about a spontaneous rupture of the plastic cannulas if pressure was applied over time. This is quite terrifying. In addition, the kinking can lead to improper blood flow and clotting in kinked locations. His surgeon came by and basically talked with me and said that VAD alarms were to be taken seriously and if they were occurring then we needed to find out why. We have learned of cases of mechanical failure in Berlin hearts and although we try our best not to live our lives in fear, it is very difficult to accept this reality. We heard through friends outside the hospital that another child awaiting a heart transplant had passed away very suddenly the week before possibly due to something going wrong with his Berlin. We pray for this family as they face a future without their beloved child. We cant help but be scared that although Fisher is doing very well that his condition is very precarious. We ask you to lift Fisher up and pray that his Berlin heart be protected until his new heart arrives. While his new dressing seems to help with the kinking, we have seemingly traded into a new set of problems. His VAD alarming repeatedly over several hours. They are still trying to figure out the reason for this and I ask you to please pray that The Lord guide them in discerning what the best course would be. On the g-tube front: For several weeks, Fisher has had bleeding from his g-tube site. As you may recall, Fishers g-tube was switched to a g-j tube back in May. Everything was fine until a couple of weeks after he got his VAD, the VAD dressing applied too much pressure to this larger button externally on his g-j tube. It appears that his site ripped from the inside out. Weve gone through phases of it getting better and then worse again since that time. Right now, hes not bleeding from it anymore, but he is leaking quite a bit. This poses a problem because some of his medicines and food are leaking out. A surgeon was called in over the weekend, but said that in Fishers current condition there arent many things he can do that he normally would. The surgeon was also concerned that the internal tear could compromise the integrity of the VAD site. Please pray that this gets better and especially that he no longer bleeds from the site as another transfusion would be a big setback. Fishers most recent antibody screen has preliminarily resulted back that he has no antibodies. This is a huge praise that Fisher has continued to be protected from antibodies even after having to be transfused a few weeks ago. That transfusion illicited such a strong response that we were worried that he would no longer be at 0%. We are thrilled that the possibility of finding a donor match continues to be very optimistic! As always, I pray for that family and very recently have begun to pray that if these are someones precious childs final days that they may be living their lives in which there would be no regrets. We can all tend to get caught up with life and lose focus of whats most important. I think if anything, Ive learned from Fisher to treasure every sacred second!
Posted on: Wed, 30 Jul 2014 18:29:14 +0000
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