Wednesday, December 30, 2009


Yesterday was hard. Hard because it just reminded us how extremely fragile our son is, and how little it takes to tip him over the edge. Something we know, but we sort of got a little short break from.

It’s an amazing miracle what a night sleep can do, and starting a new fresh day. Sarah and I got the morning together, and it was nice to have some time together. She was SO excited for her play date though, so I knew she was in good hands today.

When I walked in this morning, Jacob was breathing on his own, and his blood pressure was stable. It was so good to see him! After 4 hours of breathing on his own, he did need some extra support again, and the BiPap was put back on him. They just don’t want him to work too hard the first day after his respiratory shock. The suspicion is that he still has some sort of respiratory virus.

I also had a better day, since I got to see dear friends today. Jenny ( once again stopped by the hospital with lunch. Our chats are about the serious and the day-to-day stuff we all deal with. It’s always put things in perspective.
Jacob had the pleasure of having his OT Jill come by. She sang and played with him, and Jacob was all smiles! He fought hard to get the BiPap off, so he could see her better through the mask! I am also SO happy that Jill will start coming to our house for occupational therapy, and we might even try to do some warm water therapy in our big bath tub – something I didn’t even think would be possible!

I dreaded going back to the fish bowl after our hospice talks last time we were here. I was afraid of doctors and nurses looking at us like we’re once again back here…not yet giving up on our son. The attending MD, who we have gotten really fond of, came with a sad smile on his face, and said that he and Jacob are on the same schedule once again. Everybody was really welcoming us back, not happy to see us back, but I guess we sort of grew on them this year. The nurses chatted with me about the passing holiday, since they know quite a bit about us compared to many other families here.

Tonight, I had dinner with an old baby-sitter of Sarah. She was baby-sitting Sarah back in 2003, and 6 years later we meet in the ICU at Children’s hospital. We were eating our micro waved dinners together talking about life. Her brother’s daughter is here for an extended stay after having a brain tumor removed, only 2 years old. It’s a small world.

Tonight I am thinking baby steps. Jacob is stable, and we’re hoping he will be moved up to the regular floor in a day or two. We will cherish each day we have with him.

Much love, Maria.

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