Drained

Nathan and I have discovered the blessings of being a couple during a trial such as this.  Whenever he is tired and stressed and just can't seem to go on, I am there to pick up the slack.  Whenever I am tired and stressed and just can't seem to go on, he is there to pick up the slack.  It is a seesaw and the past few days I am on the down and he is on the up.  So, I am apologize for not keeping up on the blog and for this rather scattered entry tonight but I am drained, tapped out, finished.  I am recharging though and today my sister came into town to help out with Big Sister.  It was the perfect day because I wanted nothing more than to stay in bed and sleep all day.  Granted, I did get up to play with Big Sister and help her adjust to her Aunt, but mostly I lounged around, read, slept, and ate.  Nathan spent the majority of the day at the hospital and I spent only an hour or so - just long enough to cuddle my son and not have to make any more big decisions or be around for any more big changes.

Big changes I think are the things that drain me the most and these last few days have been full of them.  Yesterday in particular was a big day.  They took him off the ventilator and put him on the nasal cannula - basically nose tubes that blow warm moist air.  I was there for this switch out and although everything went smoothly and he made that transition without even losing much ground on his saturation levels it was still hard to see him gagging on the tubes and crying as they suctioned the mucus-filled spit from his mouth.  And his cries aren't silent anymore - they are horse, sad, weak little cries that make Mom's heart break.  They are also weening him from the morphine and sedative which makes him much more awake and aware.  So he went from tube in mouth...

to tubes in nostrils

all while being awake and aware. One step closer to coming home.  Although it will take at least 6 days to ween him down off the nasal cannula so we still have a few weeks ahead of us.  

The other big news is that we got to hold him.  If you've been following the blog you know they've been telling me for days that I could hold him but yet when it came down to it the nurses would find an excuse to postpone it.  Finally the social worker got involved and I got more demanding and we got to hold him - even if it was a lot of "work" for the nurses.  

It was wonderful and draining all at the same time.  I just didn't want to put him down.  I wanted to just scoop him up and take him home.  It brought back all the memories of the first night we had with him where I was able to hold him close and feed him and I would wake up to his soft squeaks for food.  I miss that and can not wait to have it again.   These emotions drain me. 

Today the big steps were first, a new big boy bed for him

They also weened his oxygen down .1 liter (he is now at .5 liters per minute and if he tolerates it alright they will ween him .1 liter per day).  They also took out his A-line so he is much easier to hold and much more mobile.  Most exciting change today - they fed him some of my frozen milk via a bottle, not even the feeding tube.  They say if his breathing stays down and he is able to latch they will continue to use the bottle, if not they will have to do the feeding tube. But he seems to do well and is handling the real food just fine.  

The only other meds he is on is the morphine and versid (the sedative).  Those both have to be weened slowly - like one every other day.  But he is doing very well and making big strides.  It just drains Mom.  The big decision of the day that Dad had to make was whether to allow a CT scan or not.  It was a bit of a debate but eventually the radiologist decided it really wasn't needed so the resident eased up.  Luckily Mom wasn't there.  I think I need to focus more on the steps he is making and not how long it is going to take to get to the end goal.  Bringing Baby Z home.