PRAYER FOR PHOEBE & JAXSON
Phoebe has been struggling quite a bit with neuropathy (nerve pain) in her feet and legs. It makes her pretty miserable at night. She has also had high fever over the past 48 hours which makes her feel crummy. Through it all she hasn’t lost her determination and will. She never ceases to amaze us.
Just had my heart literally ripped in half. Although Jaxson will recover from this and be home in a week or so the doctors say it will definitely happen again, and all through out his life span. I knew when I had Jaxson it was going to be a rough road for him and for his family. But I had no other choice. He deserved the right to live. The doctors agree that he very well wouldn't be here today if I hadn't taken him. The doctors also say that with his complications, especially in his brain, that even the simplest cold could be life threatening. They almost made it seem like we should anticipate his death eventually. They involved palliative care for 'extra resources'. I'm sorry for those who are reading this on Facebook and I haven't talked to in person yet. I just don't have it in me to repeat these words. Its really scary to not kniw how much time we have left with him. But I know Jaxson will be Ok whether he is here or with God. Thank you all for continuing to love and support our Jaxson and for making his life more meaningful and for letting him into your hearts. He really is the biggest sweetheart on this planet.
Now my heart is ripped into quarters. Palliative team came in, they've been following him since I've been pregnant. They talked about all sorts of things that I need to 'keep in mind' and 'think about'. They asked if we extubated and he needed to be re intubated would we go through with it, would we give him a trach, would we keep him on a ventilator permanently, would we continue with constant aggressive medical attention and hospitilizations? I'm so absolutely sick to my stomach. People may be against this and think I'm wrong but I will not let my baby live off a ventilator or a trach, I won't do it. He will not have a good life. If he's breathing on his own then I feel his quality of life will be Ok but it won't be if he's on a vent. I just can't make these decisions right now. I am so sick.
I just can't do this right now I am falling apart.
Please stand in the gap and lift Phoebe and Jaxon up to our Father in heaven who hears all of our prayers. Thank you so very much!!
Blessings,John 15:7 ESV
If you abide in me, and my words abide in you, ask whatever you wish, and it will be done for you.