July 5, Day 16 and Gage is out

What a crazy good busy day.
Lindsey made some good progress. We got her out of bed 3 times.  She walked for the first time today!!
A total of about 10 adult steps, but it was exciting to see. Boy, it takes a lot of us to move and walk with her.  We had physical therapy, occupational therapy, the nurse and myself.  It was quite the entourage.  They haven't changed much on her today, few adjustments with meds and that's about it.  The right side of the heart is holding up and not yet requiring a pump.  Most of the heavy meds she is on is to support the right side.  If not, she would require a 2nd Berlin on that side as well. But so far, so good.  Still not much of an appetite, which is what they are expecting.  She is trying to eat though.  They are going to put in a feeding tube tomorrow night to get her the nutrition she needs.  It will be quite traumatically so they wanted to wait till tomorrow to do that. They anticipate that by next week at this time she will be able to go upstairs to the playroom.  That sounds amazing to me, but we shall see.  Right now she is so thin. She reminds us of Sierra right after her transplant.  She smiles a bit more now and sometimes her cute fiery personally comes out. 

Gage was discharged this morning, so now he can sit with us in Lindsey's room.  He had two IV's that needed to be removed before he was discharged.  Jason and I held him down and two nurses (one on each arm), removed the tape and IV's.  Some friends down the hall and around the corner could hear him screaming and Lindsey could hear the howling down the hall in her room.  Needless to say, when it was over, I got him calmed down by holding him in the chair, he refused to go back into his bed.  The doctors say that he is 100% dependent on his pacemaker.  So, that always gives you a warm fuzzy feeling and encouragement to make sure the battery is always charged and working.  They are continuing to increase his Enalipril aggressively and will increase it one more time tomorrow.  Then we will start following up in clinic on Tuesday next week.  He is still in a lot of pain and wants to be held ALL the time.   He is very high maintenance, add that to helping Lindsey, and it is a little crazy right now.  Gage wants to be held and Lindsey requires a lot of work getting her in and out of bed and trying to find things that sound good to her to eat.  Between the two, I think we were a little happier when they were sharing a room and heavily medicated. JUST KIDDING!!  We are glad that Gage is doing well enough that he can be out of the hospital and Lindsey is doing well enough that she can get out of bed.  We are truly blessed.

 Gage being discharged and getting a ride to the RMH.

Lindsey heading out of her room for the first time since her surgery. Day #5 on the Berlin. 

Her two favorite therapists on each side of Lindsey, the nurse pushing the Berlin machine and I was pushing the oxygen tank. 

Lindsey gets daily dressing changes.  Sometimes twice daily if they drain more often.  She wanted me to take a picture with all of her dressings off.  The two cables wrapped in gauze are pacer cables.  They are there in case the heart goes into a funky rhythm and needs shocked.  Her pain mostly comes from the tubes coming out of her stomach (I can't imagine why, look at the size of those things).  When the doctors check the clots in the Berlin, then have to move the pump around.  She does NOT like that, and I don't blame her. She is trying to be brave and strong.  This evening she what'd to see herself. It hadn't occurred to me that she had not seen herself since surgery.  We found a mirror and she looked inside.  She cried from how much she had changed.  It truly broke my heart.

Here are a few pictures of my wonderful wife helping our Princess into the chair.  This process took about 15 minutes.