Saturday, NOT OUT YET...grr

It has been hard for me to update, because I am really struggling with being positive right now. Gage's chest tube drainage slowed down by quite a bit.  They were even talking of possibly pulling it yesterday.  I got myself really excited and started thinking of all the fun things we could do with that out (Showers, excursions with less attachments, a lot less pain, etc.).  In the afternoon, they came in and said that it was still too much by 12 mL (50 vs 62).  That is 12 mL over in a 24 hour period.  So frustrating! That is not a lot, but enough that they didn't want to pull it yet.  It just really took the wind out of my sails.  On a more positive note, we were able to have a craft afternoon and listen to Christmas music, as well as go to the playroom.  I have been signed off on all the training, so Gage and I are able to go out on our own. That is really fun to be able to have that freedom.  I know I shouldn't complain, he is doing good and heading in the right direction.  We can't start the final steps of getting out of the hospital until the chest tube comes out.  IF it were to come out over the weekend, there is a possibility of being able to get out of the hospital at the end of next week.  It would sure be nice to be out before Jason and the kids come back.

Gage has had a few 'suction events' each night.  The nurses seem to get excited about it, but the doctors and HeartWare people don't seem to be bothered.  It is still a balancing act between to much fluid (for the chest tube) and not enough fluid (for Blackwood).  All in all, still hanging in there and doing well.

There is a really difficult decision Jason and I make each time we come here with one of our children. The decision of what to do with everyone else.  It is something that takes a lot of thought as we weigh out the pros and cons of the situation.  As well as what is best for each child, as they are all in different areas of their life.  With 2 girls in high school and 1 being very involved in sports, it makes the decision a little more complicated.  Compared to 9 years ago when we started this journey with a 6, 4 and 2 year old.  However, our family is THE most important thing.  It has always been our main focus.  Technology has come a long way in 9 years with Skype and Facetime that allow us to communicate when we are apart.  BUT, it is still not face to face.

The decision has been particularly tough on Megan.  She loves to play sports and is on the basketball team in North Powder.  If she whats to play in Calif for the PALY JV, she can NOT play any games for NP.  She can practice, but no games.  We have looked for exceptions, but Calif has strict rules on that.  With that, she has been practicing with the team and watching the preseason games.  That has been pretty tough on her, watching is not her thing, but she is preparing herself mentally and physically for Calif.  She understands the importance of going to Calif and will be ready to go when the time comes, but not yet.  I'm very impressed with my children.

We have people generously offer to let our children live with them while we are here with Gage. That is so very thoughtful of them and I appreciate their generosity.  I am a little possessive I suppose, I want to be a part of ALL of my children's lives.  I don't want to miss out on any part of any of their experiences.  I only have them for a short while.  Even though we don't know how long we will be here, a lot can happen in just a month.  I want to be the one to be there when my kids get home from school and hear about their day.  I want to be the one to watch their sporting events.  I want to hear their frustrations (even if it is that they have to go to school) and the positive experiences they have.  I feel that as we go through this as a 'family' we all grow in different ways.  No, it is not easy, but it is the right thing to do.  I felt a need to explain why we are making the decision to bring everyone here to California.  I know it is not easy and I am asking a lot (yet again) of my kids.  They are amazing kids and I have seen them rise to the challenge before and am very confident they can do it again.

 Gage at PT making goop, but it didn't turn out.

 A choir group from a school in San Jose came and sang at the hospital school yesterday. Very good and fun.

Our craft afternoon with our nurse Jenna.