July 4, Happy 4th of July

2:45 pm, Lindsey is doing better.  She is having a hard time sleeping.  They are trying to get her body back into the rhythm of sleeping at night.  It is typical to be off your sleep cycle when you've been on the ventilator.  The goal today is to get her up and moving around.  They want her walking the halls in a couple of days.  No problem, her dad and I are good therapists making her move.  She did get up in a chair for the first time, reluctantly, but she did it.  She can eat whatever she wants, BUT the doctors say they don't know why but kids on the Berlin never get their appetite back (while on the Berlin).  They think it is because of the tubing pushing on her stomach, but who knows.  She wants mint M&M's, grapes and cheese pizza.  So, I or Jason will run to the store when they are napping and see what I can find. I don't anticipate that she will eat much of it anyway.  She hasn't eaten anything since last Thursday of last week and is very thin and weak. 

Met with Dr. Rosenthal to get an understanding on where she is at.  The right side of her heart seems to be hanging on.  It is still getting used to the increased flow from the left 'pumped' side and that is something they watch closely. Her kidneys and liver seem to be ok.  The Berlin has some small clots. He explained what they are looking for in that.  Small specs are ok, no concern, they come and go.  Next are long flat ones, they watch and chart each one of those.  Those may dissolve over time or grow, so they need to be watched closely.  Those flat ones can turn in to larger bumpy ones.  Now they are concerned! When they see those the surgeon will change out the pump.  That can be done here in the room and is a 40 to 90 second procedure. So far Lindsey as a few long flat ones and a few specs. We haven't seen them and frankly don't want to.  We will let the Drs worry about that. She is incredibly weak, but 'should' start regaining strength over the next few days.  They will probably need to start a feeding tube again to help with nutrients.  They fully expect she will be going to the play room in 4-5 days.  That will be great.  

Gage had his IV pain medicine taken away (morphine) and will keep trying him on oral meds.  It is a liquid medicine that must not taste very good.  He puts it in his mouth then takes a drink of juice (while the medicine is still in his mouth) and swishes it for a long time (2-3 minutes) while we are begging him to swallow.  He must get that from Uncle Jake who used to 'savor' the taste of squash as little kid :)  Sometimes Gage "accidentally" lets the medicine dribble from his mouth.  They are continuing to increase his Enalipril and are technically discharging him from the CVICU.  For our convenience they will let him stay here in the unit by Lindsey until discharge if they can keep the room open. (Thank you!)  We are very appreciative of how generous they are being for our convenience.  Gage walked for the first time today.  He is quite weak.  We ended up walking him to Lindsey's room on Jason's shoes.  Gage wasn't thrilled but we got him there.  Lindsey was happy to see him. We may try and take him to the play room if it is open later today. 

Interest lesson learned here. Gage's roommate was a baby about 3 months old. The mother rarely came by and the baby cried a lot.  The nurse had to spend quite a bit of her time swaddling the baby and was getting very frustrated. Often the nurse would give a pain med to help calm the child.  Once the mother came by and held and loved her child, the baby would stop crying.  We have since been moved to another room (not with Lindsey) and even now we can hear the baby through the wall.  Amazing what a little love can do.
Happy Independence Day to everyone, I hope you are taking this holiday opportunity to enjoy your freedom and make memories with your family and love ones!

Lindsey sitting on the side of the bed for the first time. 

 Gage-a-rilious "walking" to Lindsey's room to surprise her.

 

Finally we get to be all in the same room.  Lindsey was very happy.