Tuesday, March 16, 2010


We're home again! After a quiet night, and no more fevers, we got the go-ahead to go home this morning. With antibiotics, a few more pulmonary meds, a BiPap, and a few more nebulizer treatments to fill up Jacob's day with - we got to go home! Yeah! I was ready this time. A machine that triggers Jacob to cough (cough assist) has also been ordered. Jacob's room starts to look like a respiratory lab.
Jacob looks good today. They have put him on one medication that makes his secretion thicker, and it actually has made them fewer. Jacob even got to enjoy the sunshine out on our front porch for a bit this afternoon. We all tried on the BiPap mask before Jacob went to bed tonight, and again salutes Jacob's courage. It sure feels that you're speeding down the highway with your head out the window!
This morning after a pretty sleepless night in the hospital, I had to go down to Peaberry's for a strong coffee, since the hospital coffee simply didn't do it for me today. I was thinking as I was riding down the elevator that I wish that I had never found out what mitochondrial disorder is. At the same time as the thought went through my mind, I realized that it's not true. I would not be the same person today without the experiences of the last 4 years, I would never have met all the wonderful people surrounding Jacob who are now our dear friends, and foremost there would be no Jacob. That's an impossible thought, so living with mitochondrial disorder in our family is ok on a Tuesday morning in the hospital elevator. It was a good realization.
This was a tough hospital stay, don't even ask me why, it just felt long. At the same time, the nurses and the staff on the 8th floor make our stays so great. They are just wonderful. It might sound like a cliche, but it's simply true. I just love one of the CAs Nicki who truly cares. It's like she knew I had a tough day yesterday, she made sure to give me an extra hug and encouraged me to go out and get some dinner. It was just what I needed.
Lastly, here is the video from Jacob's school Bal Swan that was shown at the ball:
Take a peak at our little guy!
love, Maria.

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