Sunday, June 28, 2009


Jacob has now been home for 24 hours. It's so good to have him home again! It's actually good for all of us to not have to live between the hospital and home, but to all be in one spot. It makes everything so much easier. Jacob slept so well this past night knowing he was in his own crib again.
Jacob is still very weak. Sitting up in his chair for 45 minutes this morning was a bit too long. He prefers laying down with his head lifted and supported. He needs 24/7 care, and we have had to bump up our nursing care for Jacob significantly. He is not safe sleeping by himself, since he will need suctioning whenever he coughs - day or night. One of us is always close to him ready to suction him whenever it's needed. He has also been running fevers yesterday and today, so I might have to possibly take him in tomorrow to see if something else is brewing. His pump was leaking overnight, so we assume he lost about 4-5 hours (200-250 cc) of formula. If that would happen to one of us, we would drink some water, and be back to normal. For Jacob, he was turning slightly blue and showed signs of dehydration. I was already seeing myself in the ER again, but with pedialyte and water we were able to stabilize him. Phew!
We're not going to go far this week. We're staying close to the house, and will only take out Jacob in the backyard or possibly for a walk. Our goal is for him to make it to his school for occupational therapy on Friday!
We're also adjusting. It is weird to have lived in the hospital for 2 weeks only focusing on your sick child, not knowing what way it would go. Only visiting the hospital and your own house for a shower or pick up Sarah from a friend's house. We did go to Jen's wedding, our dear friend and former nanny, on Friday night. I am very happy we went, since she is very special to us and our kids. It was a strange feeling though to realize people's lives go on when your life seems to be standing still. The hospital environment is giving you comfort in that way that the focus is on your sick child, nothing else matters. It makes you kind of simple minded, I know.
We will now slowly adjust to being back home again, taking it slow, one day at a time. Hoping that our slower pace will work for Jacob's recovery. Our dear nurse Shannon will work some extra shifts, which will make it possible for me to get out with Sarah as well. She very much needs that. My dad is going home tomorrow. It was very good to have him here during the last 2 weeks, don't know how we could have done it without him and everybody else who helped us through this rough period of time.
Many, many thanks, Maria.

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