Thursday, March 11, 2010


It was time to change the background of Jacob's site, and courage is always a good word to describe our little guy. He amazes me every day with his courage no matter what he faces.
This time, Jacob has an ear infection we found out after his ear drum ruptured Tuesday night. They started him on ear drops yesterday, but he is not getting better. The thinking is that he might have another bacterial infection as well. They're checking for urinary tract infection and are suspecting pneumonia despite the x-ray looking good on Tuesday. He will be started on IV antibiotics today to see if that helps him.
He has been on the BiPap since Tuesday night. We tried to take him off for a trial yesterday, but after 15 minutes his breathing got labored and obstructive again. We're hoping today that he will do better with his trials as they take him off the mask for an hour at a time. Many have asked me what a BiPap actually is. It's a mask that you have on your face over your nose and mouth. A machine forces air into the lungs to avoid obstruction and give Jacob better, deeper breaths.

We had the care conference with Dr. E & Dr. C yesterday afternoon as well. It was the big discussion about the trache once more. Dr. E had been discussing it a lot with different doctors across all departments, and she was told by the majority of the doctors that she was crazy to consider a trache at this point! She explained again why she could see it benefiting him in terms of giving him comfort as he has obstructive breathing throughout the day as well as with his frequent deep suctioning. Having said that though, I think we all in the room felt that the risks of the trache at this point (especially the actual surgery) outweighed the benefits. We will go home on BiPap, and use it at night, and periods of times during the day if he is obstructing.
I didn't leave the meeting with relief or a good feeling. I left the meeting feeling sad. I left the meeting feeling that the end is nearer than far. These end-of-life discussions with his doctors are so hard. They both don't envy our situation, and how Jacob has digressed this last year, and they can only guide us, not knowing the final outcome.
It also made me sad, since I did see an improvement in Jacob just in the last days before he got hit again by an infection. We could go longer between his suctioning, I saw more smiles and vocalizations, and just felt that things were looking up a bit. And then we got hit again by an infection, and this one is pretty nasty. I am pretty sure we'll stay the weekend this time.
Dr. E left me with a hug, and the words that "I'm the best". I am not even sure how she wanted me to take it, but I felt actually more sad, since I am sometimes thinking that what about if we don't do everything right for Jacob? What about if we should have pushed the trache? What about if we will regret it later no matter what decision we make? There are many "ifs" and "buts" when there is no right decision.
What lit up my day was to get a surprise visit from my dear old friend Barbara. She flew in from Seattle yesterday, and came straight from the airport to visit Jacob and me. I got to meet her dear boyfriend for the first time, which I very much enjoyed. She is one of those friends that it doesn't matter that you haven't seen for 1,5 year. You just continue the conversation where you left it off. She is also following Jacob closely on caringbridge, so knew she had to find us in the hospital, not at home. It just balanced out my day a lot, and I was exhausted at night, but still feeling ok.
To friends and courage!
Love, Maria

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