Update 8/28/2013 Yesterday was day 5 at Select Specialty Hospital in Madison, and some pretty great things happened. Right at the top of the list was that at 8am the vent was officially turned off for the last time. Pa is completely breathing on his own from here on out. He does have the help of an oxygen mask over his traech, but he is doing all of the hard work. He’s able to have the speaking valve on for most of the day now, and pretty much talks non-stop. Another pretty big accomplishment is that he passed his swallowing test … and this means he gets to attempt to eat a meal today. I’m sure this will be completely soft things like pudding or yogurt or mashed potatoes. We are so happy, and proud of him for pulling through this and being so strong and determined! I am so thankful every single day that he is still here with us, and it is wonderful to see the improvements from day to day. With that being said, however, I feel like I do need to make you all aware of some of the issues that he is still struggling with. His visual perception is off. The easiest way that I can explain it is that if you hold something out in front of him and tell him to grab it, he reaches to the wrong spot. He keeps telling us that he sees strings coming down from the ceiling, or asking us if there is water dripping down the wall. From what we can tell he is having a hard time with color contrasts mixed with his depth perception. We’ve been told that with the type of brain injury he had from lack of oxygen, that this isn’t uncommon, and isn’t necessarily permanent. But it’s hard to explain it to him. Another issue, but one we’ve seen improve greatly over the past 5 days are his motor skills. It’s hard for him to move his hands or arms the way he wants to. When he first woke up, he could maybe only squeeze your hand, but he was hardly able to move his hand or arm at all. This is not happening because he’s not strong enough, it’s happening because of the brain injury. The pathways from his brain that tell his hands and arms to move were damaged… and are slowly starting to repair themselves. He can now reach up and awkwardly rub his eyes or scratch his nose. We can tell that it takes a lot of concentration on his part, and happens slowly…. But it’s progress, and we see it improving daily! With this being said, he can’t pick up and hold anything on his own. He won’t be able to feed himself today, he wouldn’t be able to answer a phone, or hold it to his ear to be able to talk. I’m confident that with enough time and practice these skills that we all take for granted, will work for him again. The other, and probably hardest struggle is his memory. There are times where he is completely lucid – usually right after he wakes up in the morning, or after a decent nap, when he knows that he’s in the hospital because he had a heart attack. During these times, he remembers all of our names and can hold a decent conversation. He makes jokes, and is the good ‘ol Pa. He can tell us that his head feels foggy and he can’t see very well, says maybe he needs his glasses. But sadly, that’s not the case all of the time. I’m not even sure where to start with this, because it’s hard to talk about… He usually knows that he has 1 son and 3 daughters, but sometimes he will mix up our names, or it will take him a while to figure out who we are. If you ask him where he is, he repeatedly says Rhinelander, WI. If he’s asked why he’s there, sometimes he says a bike wreck, or a brain aneurism, or “it’s not a heart attack, it’s just a cold.” I’ve heard people ask him the year, the first time he said 2003, and that the president was George Bush, the last time he said 2006. A couple days ago he said to me, “Tam, call my dad. Tell him I had the big one, but I’m ok… Ya got the number, right?” … Gramps died in 2009. I could go on and on with examples but after that last one, I think you get the point. How far he’s come in the last few weeks is remarkable, but I’m not sure if we, as a family, could have ever properly prepared ourselves for this. We do a lot of gentle repeating of information, before he asks, as to try and limit his confusion. Sometimes he’ll say things that aren’t quite right, but instead of correcting him and confusing him more, we just have to agree and move on to the next subject. Because we know that the memory issue gets worse the more tired and over stimulated his brain becomes, and better after he sleeps for a while, we are hopeful that with enough time and rest and good, solid sleep this issue will also start to repair itself. On the positive side, he knew my name the whole time I was there yesterday, gave me a big smile and a “Hi Tam!” as soon as I walked into his room – and even though his memory seemed to go in and out during that time that I was there, as I was leaving and telling him goodbye and that I love him, he responded, “I love you too… Say hi to Adam.” That was awesome! Pa knowing that Adam is my other half, and that I was going home to him was how I knew he was “there”. It’s always so much easier - mentally and emotionally – to leave on a high note. So…. That’s where we are for now. Physical and occupational therapy will continue to work with him 5 days a week. He’ll slowly begin eating soft foods, probably with our help until he can hold a fork or spoon, and the tube feedings will start to be reduced. If he continues to breathe great all on his own for the next week or so, they will put a cap over his traech, and eventually replace it with a smaller one – two steps in being able to remove it all together. We are hoping to meet with a neurologist sometime this week to review his mental status and talk about the effects of some of the medication that he’s on. And other than that, we are just taking things day by day and trying to think positively. — with Amanda Elizabeth and 3 others.
Posted on: Wed, 28 Aug 2013 13:50:31 +0000
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