Small strides

Avery continues to improve a bit everyday.  I took Isaiah, Ness and a nurse to visit him on sat. and he was tired by the time we got there but we did see a brief smile between the boys.  Isaiah of course is never thrilled to be out let alone in a hospital setting.  He gives you the "are you kidding me" look and once he starts retching then you know it is time to go.  I did think it was important that the boys see each other even for a brief visit.  I guess it made me feel better too. 

This is going to be a tough week because I of course have to work and Rick has camp all week.  He has been doing this camp since he was a kid and it lasts until at least 11p Mon-thurs.  So unfortunately, Avery will have to hang out somedays on his own.  I feel guilty as all hell but what can you do.  I will be there daily after 3p and will sleep there nightly.  We have comfort knowing that the unit now knows him pretty well and that he is in good hands.  This is such a long hospitalization for our family and life goes on but it doesn't make it any easier on all of us.  Today I have to take Ness to do some work with me then we are off to hang out for the day at the hospital.  I wish I could take her to a water park orr something but instead its hanging out at the hospital.  Guess she can catch up on her summer reading.

Avery has a nice schedule with his bipap and O2.  He comes off at 8am and is up sitting in his chair and then back on at 12-2p, then back off until 6p for bedtime.  He is completing both courses of antibiotics and they are starting to slowly wean his versed.  The fentanol will be next and I fear that it will be a much slower process.  I am definetly feeling that there is a light at the end of this tunnel finally.  Although it may not be for a couple of weeks but at least I can see it.  Avery is such a trooper and is working so hard.  He sure surprised all the drs.  We just cannot wait to have him home soon and have our lives back to our normal.