I know it has been a while since the last time Nell or I updated our blog. It has been crazy for the both of us. Faith keeps Nell busy all day. Her medicine and eating schedule is enough to wear anyone out. Every six hours she has to receive some type of medication. She has also found it to be more fun to take a nap while she is supposed to be eating. This has forced Nell to cycle between food and medicine from 5 in the morning until 11 at night. Read more…
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Today is day 28. We have now spent an entire month at the hospital. It has been an amazing journey. Over the last few days, we have seen some amazing improvement. For the first time, the doctors listened to her lungs and thought they sounded normal. We have also seen a number of medications and pumps disappear. At one time, Faith had eleven different pumps, now she is down to three. God has just done tremendous work healing our daughter.
Today is also special because it was the first time in four weeks that Nell was able to hold her. Both of them were incredibly happy. It was actually very cool to watch. The volume of air going into Faith’s lungs increased significantly as soon as she was in Nell’s arms. We are both praying that she will be extubated tomorrow and that she can be held on a regular basis.
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Today Faith continued to cooperate. The doctors were pleased with the progress that she was making. It is slow progress, but steps in the right direction nonetheless. The staff is still not planning on things going very quickly. Yesterday they painted her door.
It is much more colorful. The social worker wants us to bring in pictures to decorate her room. It’s hard to want to decorate because it’s like you are giving in to her being there for a while longer. By not putting anything up, we are able to hold on to the thought that she will come home sooner. We’ll see how it goes over the weekend. Maybe if things continue the way they have over the last day, it won’t be much longer.
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It has been six days since Faith’s last surgery. Her heart appears to be doing well, but her lungs are still very sick. She has developed the same bacteria’s in her trachea that were there before the last surgery. The doctors have been working aggressively to treat it, but that has required a substantial amount of fluids.
This has made it difficult to heal the other damages to her lungs. In order to help with some lung recovery, her chest has been left open, and she has a patch holding it together. The idea is to allow her heart and lungs more room to work under less stress.
Some good news is that the secretions in her lungs that were once bloody have been clearing up. Unfortunately at this point, there are so many other things going on. It is like a vicious circle. Read more…
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Today Faith is going in for another surgery. Her mitral valve has some severe leakage, which the doctors believe to be the biggest cause Faith’s current condition. The surgeon is going to go back in, and either try further repairs or replace the valve all together. The replacement valve will be made of pyrolitic carbon, and it will be 15mm or 17mm in size. The 15mm valve is a custom valve that is made specifically for this operation.
This surgery, however, does not come without significant risk. At this point Faith’s lungs are very sick. They have not been able to significantly recover from her previous surgery because of leakage in the mitral valve. Read more…
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