Nothing major to report from the homestead today. Liam had good days and slept through the night again. He’s a bit cranky because he finally got his H1N1 vaccine yesterday (whew…) and he had another seizure this afternoon but just a bit of a blip and nothing worth worrying too much about. He has otherwise been active and alert and simply wonderful to be around.
He had a nice long visit with his Meme (My Mom) yesterday and another long visit from his Grampa (my Dad) today. Its a very good thing that Liam loves to be held.
We have been weaning his oxygen veeerrrry slooowly. He’s down to 1liter of flow and could probably go even lower as he is satting at 100% most of the time. We have decided on a long term plan for the wean because of the severity of this year’s flu season. Had we come home in May or April and facing the summer where less bugs spread we would be much more aggressive. Let’s get through the winter before we make any major changes. He deserves to get some rest and grow stronger before we ask any more of him.
I hope everyone got a chance to thank a veteran today. Thank you, men and women of the military for your service.
I had to work today but only for a half day. Came home and met with a service care coordinator for Liam and then spent the rest of the afternoon holding my boy and reading to him. We played games and sang songs. There is no better way to spend an afternoon.
Karin and I are making breakthroughs and major decisions with the home nursing situation. It is a strange thing to have a staff of nurses in and out of your small house and as we have grown more comfortable we have grown more assertive. It is important that everyone in the house remembers who is in charge of all decisions…Mom is. Sometimes she even lets me think that I had a part in the process. We have made some room layout decisions that will give us more of a private space that Liam can come with us where we can escape. To run away from the stream of visitors and “staff” — Physical therapy, occupational therapy, speech pathology, Nurses, medical equipment representative, oxygen delivery man, Nursing supervisors. More people have come through the house in the last month than we have had over to any apartment we’ve ever lived in. The second floor will become our little oasis. An island from the stress and chaos. A comfort zone. I can’t wait to get started this weekend.
Got a bunch of cool links but not nearly enough energy to put a list together now. Now, we try and sleep.