Tuesday, November 17, 2009


I read somewhere that happy people focus on moments of joy rather than overall happiness. I am sure many people dread the life we live. A sick young child with a life threatening progressive disorder without a cure in sight, how much worse can it be? I sometimes see it for a split second in people's eyes, but I hope they never see it staring back at them. The simple reason is that we feel happy in the middle of all our stress and uncertainty. We have completely moved away from finding complete happiness in all parts of our lives. The focus is on moments of joy, and they sure are there for us.
Today was a good day. Jacob simply couldn't stand the tube after having been awake since yesterday morning. He was crying and fighting the tube, and was breathing on his own. They decided to move up the extubation to first thing this morning. This is the moment I have dreaded after having had 2 difficult extubations behind us. I realized as soon as the tube came out that this was a successful extubation. Jacob only needed a little bit of oxygen in order to breathe! Your throat is sore after having had a tube down there for 7 days, so Jacob was pretty stressed for a couple of hours and mainly wanted to find a comfortable position, preferably as close to mommy as possible.
A bit later in the day, the EEG came off! You should have seen Jacob's hair after having had glue in it for 15 days! Unfortunately his skull was bleading from the leads having been on for so long. So, when it was time for the ICU spa it wasn't as popular this time.
We also got better news from neurology today. The EEG actually looks much better than before the coma. They still see some activity from the right side of the brain, but not constant seizures as before. They are hoping with adding one more seizure medication that they can stop the majority of Jacob's seizures. We might still have to live with some seizures, but we're willing to trade that for Jacob's alertness.
Jacob is doing pretty well with his secretions as he's riding out his infections. We have seen a few seizures today, but fairly short ones. His body is still stressed from everything he has gone through this past week, and he's running a fever tonight. In the coming days, we'll work with neurology on his seizure meds and Jacob will have another EEG to make sure the home meds are doing their work. We might come home over the weekend.
The highlight of the day was that both Joakim and I got to hold Jacob. We haven't done that in exactly 15 days. That was very special, especially since the hospital's harpist came by at the same time. We sat and listened to some of Jacob's favorite songs as we were cuddling. Moments of joy.
I also made several interesting connections today. I met a member of the epilepsy foundation, who helped me a lot with deciding on the coma or not. She is connecting us with another family in the PICU with similar story.
We were also asked by a doctor in the special care clinic, if we would be willing to talk to a group of med students tomorrow on how to best treat parents. I think we're pretty suited considering how many doctors we have dealt with at Children's!
Lastly, the director of family services came by. She wants to know what we want in terms of Sarah visiting with Jacob over the Christmas holidays, if Jacob is hospitalized. That will be their guideline for the overall hospital. Sarah thought that was kind of cool as we discussed options tonight! She is even considering renaming the hospital to Children's from non-children's hospital again!
Karen, the child life therapist of the PICU, will see Sarah on Friday. This has been a really hard hospital stay on Sarah, so I think it will be really good for them to meet again. They haven't met since June. Karen gave Sarah and Jacob matching blankets and stuffed animals today, so they both can have them tonight in their different places. They are now both sleeping tight with their Winnie-the-Pooh blankets and doggies.
This was a good day as I count my moments of joy.
Love, Maria.

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