Tuesday, December 15, 2009


Jacob is breathing on his own, just needing a little bit of oxygen during the day. They removed the BiPap yesterday morning, and we haven't needed it since then. Jacob definitely has secretions that he needs help with as he is getting over his pneumonia. Nothing new there. The pseudomonas has been hard to fight, since the bacteria was resistant to the first set of antibiotics. Last night, they started him on two new ones to fight pseudomonas. He has excessive diarrhea that they are watching. They are hoping it's because of all the antibiotics. Seizures are there, but no worse than before his crash last Tuesday.
I should be really happy that Jacob once again fought through one of his crashes. He is definitely on his way to recovery, and they are moving us up to the regular floor today. He continues to amaze me with his fighting spirit no matter what hits his body.
What is so hard is that I constantly have the larger decisions around hospice and end-of-life care on my mind. It just doesn't leave me - day or night. It 's there as a reminder every time I look at Jacob, and I simply can't wrap my head around a decision. I am looking at Jacob, looking for clues he can give me, but I just don't see a clear answer. It's very frustrating for someone who typically makes decisions fast, but I also don't think I ever have had to make such a difficult decision in my whole life, ever.
Joakim and I are meeting with Dr. E. tomorrow. We have lots of questions that we need to have answered to understand what this would even truly mean for Jacob. Secondly, I am not sure we can make a decision before we go home. We both feel we need to take him home, and see how he does. Will he crash again or will he rebounce? I honestly don't think anyone has the answer to that except Jacob, and he will show us in time.
I will admit that I haven't been able to write as frequently. I have been angry at the doctors willing to give up on Jacob. I am sure that in their mind they are providing us with all options available, but it just feels that they are ready to give up. They don't always say it, but the look on their faces has changed.
I have also felt so sad that we are in this spot, not knowing what to do. It's also a very intense life down in the ICU - extubation one day, BiPap the next - just to have time to have clear thoughts down here is not easy. They come at night when things slow down. Unfortunately clear thoughts and night time have never matched for me as I am turning in bed.
I am looking for an answer together with Joakim, and I think I have to be in this place of limbo until a decision is there. I think we can't rush it, and can't force a decision. I am just hoping that I will always be able to put Jacob's needs first before our own love for him that will always be there, and us never being ready to give up on our little guy Jacob.
Love, Maria.

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