Wow my noggin is heavy!

Well today was a flurry of activity for the Westfall’s.  You would have thought we had a revolving door cause as soon as somoene would leave (or often before!) someone else was there to talk to us about something else.  Nurses talking about medications, RT’s talking about treatments, the home equipment guy showing us the home suction machine and oximiter, the infusion people (for feeding), representatives from the respitory clinic, physical therapy, neurology consultation.  I think that is about it.  The neurologist said he thought Greyson was doing well, a little behind but considering all he’s been through he thought he was doing good.  He did warn me that Greyson is showing signs of being pretty smart, so we’ll have to stay on our toes.

Once the people flow let up we hit the phone lines and started making all the follow up appointments we have.  In one week he will see his pediatrician, then the next will be with the pulmonologist and nutrition.  Then he will have to see the GI to check on his g-tube.  Mixed in somewhere will be PT/OT & Speech (but they will come to our home!) and something will happen with him being enrolled in the neonatal follow up program.  Thankfully he has to see his cardiologist, but not till september for that one!  My sister told me all these appointments are how you know you are a parent.  I’ll have to get better at it as I scheduled one of Greyson’s appointments for the same time as one of my Dr’s appointments, live and learn!

So it is 9:30pm and Greyson is asleep.  We finished his trach care a bit ago and made it through it OK.  We’ve done it a lot yet tonight, which is the first time we have been responsible for all his care he was, shall we say, not tolerating it very well.  If only he would realize that the kicking and screaming only slows the process down and makes it worse.  Of course I’m 34 and I haven’t figured that out yet so I don’t know why I expect him to!

So his home vent is here and he has been on it for awhile.  He is now on 100 percent oxygen (don’t worry it’s not bad!) at 1 liter.  With the new ventilator they don’t have a blender so he doesn’t get a percentage, you alter how much he gets by the flow of oxygen.  So 100 percent oxygen at 1 liter is comparable to being at 28 percent oxygen.  Another change made today was we are feeding him by bolus.  This basically means you hook a syringe up to his g-tube, dump the milk into the syringe and allow it to gravity feed into his stomach.  You have to be careful you don’t feed him to fast this way, but it goes a bit faster than the pump.  If  he continues to tolerate this (we’ve only fed him once this way) it will mean we won’t need a pump at home to feed him with.  This would be great as it would be one less piece of equipment we have to haul around all the time. 

Wow this is getting long.  Can you tell I’m just sitting in the hospital with nowhere to be for the next 40 hours?  Alright let me find a picture for you all and I’ll let you get some sleep.  Greyson will probably be discharged on Tuesday of next week, although there is some chatter that they may break the rules and let us go home on Monday.  We’ll have to wait and see if there is any truth to that.

OK it’s almost 11 and we have finally finished giving Greyson his meds and feeding him.  He is finally settling down (he was pretty upset, not sure if it was hunger, or reaction to needing his meds) and falling asleep.  I think he’s putting us through extra to prepare us for going home.  It’s funny how we’ve done all this a lot, yet now that it is suddenly “for real” it seems more challenging.  Anyway we are off and running toward the home gate!