My mom brought me a bouquet of sweet peas a few days ago and my house smells like April. It is, of course, the best month of the year. Not only was I born this month, my oldest son was born this month, I was married in this month, my Opa and my Grandpa Taylor were born in this month. This is the month when we get rain showers and the sun is just warm enough to tempt us to go outside and breath deeply. It is the month of diamonds and sweet peas and baby kittens and velvet grass under bare feet. This has been my month since the day I was born. My Opa and Oma used to take me out wherever I wanted to go, and buy me whatever I wanted during this month. When I was 10, my parents gave me a brand new, Victorian style bedroom, complete with antiques and new carpet and wall paper. That was the same year I got a horse for my birthday in April. It is the month where I get what I want, no questions asked. The only month when I can ask for something without being told I am selfish. And always it is the month of sweet peas. It is also the forever the month my youngest son embarked upon what may become the last journey of his life, and for the first time ever, I might not get what I want.
Those doctors are trying their darndestĀ to give me what I want, though!
We (well, I mean the doctors) have officially begun the process of weaning Mr. Bug off his life support. This is not necessarily an indicator that he is getting better. It is more an indicator that we are quickly approaching the point of no return, the 6-week marker, when if he is NOT off life support, he will have a very slim chance of ever getting off of it alive. The first thing they have done is set his ventilator such that if he wants to breathe on his own, he can. After 3 weeks on the ventilator, the lung doctors are edgy about all of this because at this point, keeping him on the ventilator can cause more harm than good. His blood gas ratios have indicated that his lungs would be triggered to breath, if he is no longer on the paralyzing drugs. And so his paralyzing drugs were all but eliminated on Sunday. It takes a few days for his body to eliminate this drug, so they are expecting that if he is going to breathe on his own he will do so sometime this week. The second thing that has been done, as I mentioned before, is that one of his anti fungals has been eliminated. This has been done so that his kidneys can have a few weeks to heal up and get working again before that critical 6-week mark.
His white blood cells are still very very low. š
Mr. Bug has been tolerating all of this quite well. He has the best nurse in the world, Nurse Jan, who can fix anything with him and who can get him to tolerate anything!
This appears to be very critical week with him because I am not sure that they will increase his settings back to the point where he was again even if he crashes. Depending on how much progress the believe he has made, they may simply let him pass away if he cannot survive with the new life support settings. If he has improved, in their eyes, they may increase the settings to help him through this time, if he needs it. I do know that if his heart goes, they there is a court order indicating that he is not to be revived. That order will stand at least until May 1 when we have another meeting with all the doctors.
I know this must seem like the same news every single day. However, he IS continuing to make improvements every day. They are tiny, but he is improving! If he can make it over this hurdle and get off life support, he will be in the stretch where we wait and see if he can improve enough to actually breathe without a ventilator. And if he can get to that point, we wait and see, for another year, if he can actually live life without the fungus re-emerging, and without his lungs crashing, and without his kidneys crashing, and without having a heart attack. We find out over the next year if our little fragile boy can bounce back to what he was, or if he will have even more physical issues to endure throughout his life. Please continue to pray!
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