While complaining about medical supplies I neglected to fill everyone in on the other, more exciting, goings on here at Pressure Support Central. Sorry about that.
I mentioned it on Twitter but didn’t go into too much detail. Karin, Liam, Liam’s nurse and I got ourselves up early the other day to go check out what will become Liam’s school!
While he won’t be attending in the true sense for another 17 months, Liam will be going to his school for his therapy services starting in January. So we met the therapists, and social workers in the school. January may seem a bit far off for meetings to start now but disclosure forms need to be filled out including one form that when Karin asked what it was for was told by the social worker that she wasn’t authorized to talk about it until it was signed.
It’s fine, lucky for me, Karin can read.
Anyway, we’ll all meet again in a few months to formally start an IEP and make sure that this particular school will be able to accommodate Liam’s needs. Within minutes it was apparent that the education system we will need to navigate through is a different world from the medical system we are used to and comfortable with. It feels like starting over.
I mentioned a few posts ago the speech I was asked to make. Well it went great and didn’t actually turn out to be a speech at all. Instead of a formal “speech” I ended up less formally “speaking” to a group of new nurses, CNA’s, lactation counselors, pathology techs, and unit assistants for close to 2 hours about Liam, Liam’s hospital stays, and life at home. I answered questions about how the people doing their jobs while Liam was there effected our lives. The good and bad. I brought pages of bullet points which came in handy and kept me on topic but any fear of public speaking evaporated almost instantly when I started by bragging about my incredible wife and son. What’s cooler than that?
I’ve been contacted by other people in the hospital who were not in attendance but had heard about it and this probably won’t be the only chat I’m asked to give. It has been suggested that I possibly help by meeting with and talking to NICU fathers and families. I’m excited about that. Working in the same hospital as the NICU we spent so much time in comes with it some complicated emotions, frustrations and privacy issues. Being able to help the NICU staff and families is all that I’ve got to turn some of those frustrations around.
Now it’s time to start figuring out how to get paid for this work. I’m all about helping people but diapers ain’t cheap people.
Now on to the really exciting part. VIP clinic this week. After explaining to the pulmonogist that we would like to start testing Liam’s strength sans ventilator she responded with an eagerness and excitement that Karin and I weren’t expecting.
“Yes, yes, yes! If you two think we should try it then we should!” she said. “but rather than having it be a piecemeal attempt let’s truly go for it and issue orders so that your nurses have to support this and help.” (I’ll mention here that nurses are unable to do anything unless there is paperwork signed by a doctor explaining its benefits. This includes giving vitamins, giving chest PT (a gentle patting on his chest and back ( I love parenthesis inside of parenthesis)) and brushing teeth) SO orders have been written and are now in his file…
10 minutes twice a day. Liam breathing on his own and without the support of a ventilator! Doctors Orders.
On his first try he made it 3 and half minutes before secretions (read – drool and spit) started clogging up his airway but 3.5 minutes is better than none. Our lungs are muscles after all and Liam’s have been coddled for far too long. (I kid of course) Liam will continue to grow stronger and stronger and we can only hope that in the near future we’ll be able to keep him off of the vent for significant portions of the day and hook him back up only to sleep.
But for now I’m over the moon about 3 and half minutes. A father couldn’t be prouder than I have been all week.
This kid of mine.
Anyway, that’s all I’ve got for now. The garden is growing well, as are the hops. I’ve got ingredients for a new batch of beer that I’ll brew on Tuesday (hopefully) but I’ll try and put all of those things into a post of their own.