That about explains my frustration levels... through the roof. There has been a severe lack of communication between the doctors and Josh and I and it is to the point of being ridiculous, even the nurses have started to pick up on it. Most of you probably remember the blog post from last Wednesday that indicated that we would be having surgery Monday or Tuesday, but unfortunately that is not the case. I wish I could tell you why they haven't scheduled it before now, but I really don't know why they are waiting to get things done.
Sawyer is becoming more and more alert, which in turn means he is trying to fight the tube more and more and he becomes more and more agitated as time goes by. They were giving him doses of morphine and versed when he would get really upset (heart rate increases and saturation level decreases) and the amount of doses has been increasing over the last few days so now he is on a constant drip of versed to keep him comfortable and also keep his saturation levels high. They thought this would be a better way of giving him the medication than having to run it through his PICC line. This all is pretty upsetting to me as well because I can see my baby getting upset and there is really nothing I can do for him. We met with one of the 'fellows' this afternoon to discuss some more of our frustrations and concerns and also try to get an answer on surgery. He told us the word is Thursday, but not to get our hopes up. And if there is one thing this stay at Egleston has taught us, it is to not ever get our hopes up so we aren't. It would be nice if the surgery was Thursday, but I just can't get my hopes up and I will have to wait and see.
We also discussed the issue with the lack of communication from the doctors. They are all very well aware of how we feel and are making an effort to better communicate. He did discuss the fact that the lung issues won't go away after the surgery and they will most likely have to do something to correct and/or help them. We aren't sure what that means and he couldn't give us clear answers but he did say that the ENT doctors would be reviewing the case tomorrow and make a decision on what they felt was necessary. They may try to talk with the surgeon and see if they can do something at the same time, or they may have to do something at a later date (obviously sooner than later). This is all still up in the air but I will keep everyone updated as time goes on. He explained that they have been adjusting his ventilator settings because they are trying to prevent any lung damage to his right lung. They can force air in, but then because of the compression, the air cannot come back out which can result in lung damage.
We are going to rounds in the morning to see if there is a chance the surgery has been scheduled. We are also going to discuss the issues we have of the almost two weeks he has been on the ventilator. Josh and I are the advocates for sweet Sawyer and we plan to fight just as hard as he is to get this all behind us. We are extremely concerned about lung trauma and would really like to get things taken care of and looked at so that Sawyer can be on his way to recovery. If surgery has not been scheduled by rounds tomorrow, Josh and I will be requesting an immediate meeting with the heart surgeon. We understand that the heart is of concern, but so are his lungs and we don't like putting off one surgery to risk the development and health of another organ.
Please pray surgery is scheduled tomorrow, and if it isn't that we are able to meet with the heart surgeon as soon as possible.
Please pray I keep my sanity through rounds in the morning and am able to explain myself and all of our concerns without getting too angry or upset.
Please pray for Sawyer, our little fighter, that he continues to be a heart warrior and fighter.
Please pray for discernment for the doctors and that they make the best possible decisions for Sawyer and the surgery.
Please pray for Josh and I as we continue to WAIT as we have for almost two weeks.
Please pray that the ENT doctors feel it will be a 'simple' fix to help him breath on his own and that we will be home sooner than later with a happy, healthy baby.
Love,
Ashlyn
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