July 9, Day 20 on the list

Stacy here. Jason stayed the night with Lindsey.  She needed it. She doesn't sleep much.  They did 3 or 4 chest x-rays throughout the night.  She tries to sleep, but couldn't.  Jason did get some sleep in his comfortable '3 Chair Combo'.  I stayed the night at the RMH with Gage and Megan, who both needed a good nights sleep.  The only hard part of having them here is they don't get to bed until really late every night.  We hate to leave Lindsey until she is asleep which usually puts us at home at 10:30-11:00 PM.  That is if one of us stays there with her.  The kids are used to going to bed at 8:00 PM, so after a few days of this it really starts taking a toll on them.  Both Jason and I want to be here with her, but it has worked to do the tag team approach.  Heaven knows Lindsey can't handle Gage for too long after he gets tired (neither can we).  So, that being said, Jason stayed home at the RMH with Gage to let him sleep with his pain med drawn up to give the second he wakes up.  He is so stinkin' cute when he is sleeping and when he is feeling good.  It has been great to have Megan here.  She is trying to find things to do with Lindsey, but frankly Lindsey just isn't feeling up to anything yet.  This as been a really slow recovery from a fall back.  Of course, baby steps a little at a time.

Jason and I were talking this morning and saying how Lindsey just isn't joking or anything.  We were saying that we didn't blame her.  She has a tube down her throat that they won't take out.  It blows a lot of air down her throat which dries it out, "as dry as the sun."  All she gets is a wet sponge.  She still feels nauseous and gags like she is going to vomit, so they have to suck any of the contents in her stomach out of her feeding tube so she doesn't vomit. Her chest is hurting every time she coughs or gags at the incision sites and where the chest tube is in her side.  She feels "cruddy" from loosing a lot of blood and having her on lots of meds to help her heart and her blood pressure.  And she is only 8 years old.  I don't think I would be in a very good mood either! As far as we know there has not been anymore re-inflating of her right lung.  We will see what the doctors say at rounds.  Lets just get her well enough to get off of the vent.  They still have her listed as a status 1A, which I am grateful for.  Part of me hopes that she gets a lot more stable before one comes though.  This would make her recovery from transplant very long.

Rounds are going on right now. It is hard for Jason to listen to rounds.  They talk about a lot of stuff.  He just wants to know what they want to tell him.

10:00 am. Rounds are over and here is the official status.  All in the right direction.  Her right lung is showing a small amount of inflation.  They are going to give her a med to help break up the mucous in her lung, if there is any. She is going to stay on the vent with the increased pressure to help with that.  The Berlin pump looks good.  There are small clots but nothing alarming (says who, any clot sounds alarming). Her right heart function is pretty strained, hoping the improvement of the lung will help with that.  Chest tube will stay in for a while, just in case.  There is still a little drainage from the tube.  They may start the blood thinner this afternoon.  We confirmed she is still a status 1A, she has not been moved off the list to a status 7. 

Thank you for comments, prayers, and jokes. They all help