Weight: 2 lbs 10.6 ounces (1210 g)
Andrew is getting worse. He has been having spells every 10 minutes today so they did an additional blood gas and had to turn his ventilator up to 60. It is some point between 60 and 70 that he would go back on the oscillator, and then we have no backup plan as the oscillator is the most they can do for him. His lungs have shown nothing but decline for the past week and I am quickly getting discouraged as far as him getting better.
He is still spitting up his feeds even though they spaced them out on a 30 minute pump.
His umbilical IV isn't working well and will come out this week. I don't know if they will give him a new IV or not as he does not have good veins, and with his arthrogryposis they will have a hard time keeping an IV in him.
The doctor came around and spent some time with us. It was a different doctor than yesterday, she is giving Dr. Hassell a break. She reinforced what Dr. Hassell said about the lifetime breathing support and the feeding tube. She told us more about the risks of having a trach (permanent ventilator, pronounced like "trake"). The risk for life threatening infection is very large, so people with trachs have a very short life expectancy, usually into their 20's at most.
In addition to this, she feels that he will not be able to do anything, even sitting in a wheelchair would be a huge accomplishment because of his nerve damage and scoliosis. It is likely that Andrew would spend his life bedridden on a ventilator and feeding tube. Because of the decline in his lung function and his quality of life, the doctor recommended that we think about our goals for Andrew's life and how long we would like to keep him in the sick state he is in on life support. She said she would support any decision at all that we make.
Josh and I have decided that it is not up to us to make a decision to end his life now. So we are going to wait and see, and pray that God does not allow us to feel the pain involved in a decision like that by either healing Andrew or taking him home.
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4 comments:
Praying! God will show you what he wants and what he wants you to do and gives you the stregth to do that whatever it is.
Oh, Jen, keep hope! Remember how those doctors kept telling you that Andrew would be born stillborn or at most live maybe three days?? Here he's three WEEKS old and those folks don't KNOW what Andrew will be able to do. To be honest, probably no one does!! As the parent you know you have to weigh all the information, pray about it, and make the best decision you can. I know you know that, but I'm saying that with my arm around you and tears in my eyes. You do the best you can, and I know every day you spend with Andrew is one more that he is being taught about God's love for him.
And there are so many, many folks praying for YOU as well.
-Christine.
Jen, be strong..It's a tough decision and you should act on behalf of yourself and Andrew..Think of if it was up to Andrew what would he want...
Be strong, pray and don't rush with decision. Both of you have to be comfortable with whatever you decide.
You and your family are in my thoughts
Jennifer, we are praying for you, Josh, Andrew and Haley. The doctors don't know all of the answers and God will help you figure it out so keep praying. I'm so sorry that you have to endure this. Our love is with you. Lots of people praying for you here.
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