July 3, Day 14 - Miserable but uneventful

9:50pm.
Lindsey had some adjustments made on her Berlin.  They are watching some clots very closely and the right side of her heart still seems to be struggling.  The hope is that she will not have to go back into surgery to get a 2nd pump put in for the right side of her heart.  They are watching her closely to avoid this and making adjustments with meds.  They spend lots of time visiting out at the nurses station and then coming in to Lindsey's room adjusting stuff.  Then they sit off to the side and talk quietly amongst themselves.  This is very nerve raking to Jason. Lindsey is still in a lot of pain and hates to be moved at all. Still lots of wires and tubes coming out of her even though they have gotten rid of 3 chest tubes, an IV, a folie catheter and the ventilator.  Tomorrow the plan is to take out her neck IV, her tube in her nose to her stomach and get her up in a chair.  So, we want to make sure she gets really good rest tonight!

Gage, is still in a lot of pain. He hasn't gotten out of bed yet, but has sat up and tolerated it.  His main phrase while he is sitting up is, "My tummy hurts" over and over again. He isn't eating much yet, but at least he is trying, so he must be feeling a little bit better, I guess.  Today he wanted us to lay in bed with him.  Yesterday he didn't want us anywhere near his body in the bed but just rubbing his head. It felt great to lay in bed with him today, because I needed the nap and to snuggle with him was very relaxing. Plan for Gage is to wean him off the morphine pump and get him up out of bed.  They are aggressively increasing his heart medication he will go home on for heart failure since he is here and they can continuously monitor his blood pressure (which is pretty low 80/32. They are still mystified as to what has caused this, they have never seen anything like it.  Of course, we are the 'Bingham's'.

This evening as Jason and I were taking our dinner break back at the RMH. We discussed all these things that are making us worry and nervous and give us that pit in our stomach.  We decided that there is nothing we can do to change the course where things are going or what is going on.  The issues are so complex, we need to trust in the doctors.  Our job is to care for and comfort our sick children and let the doctors decide what needs adjusting.  Our vision of this trial in our life is so narrow that we can't try and predict the outcome.  It is also not going to last forever and it will have an end.  Our Heavenly Father's vision is so beyond our own that he knows what he is doing and we fully trust him with all our hearts, might, mind and strength.  So, we will 'try' to stop our worrying and put our focus to giving our love and care to our children and trying to make each day a little better in some way for them. Jason and I must not let Lindsey and Gage see the worry, the fear, or negative of the situation but provide them with the confidence and hope that they WILL get better.  All is much easier said than done.

There are some amazing support back home, in Utah, and around the world.  I have no doubt each prayer is heard by our loving Heavenly Father.  We are so grateful for the love and support.

Gage and I taking a much needed nap. 

Gage-a-rilious and Daddy trying to figure out what to order for dinner while watching another episode of Dora on Nick jr. Gage's "I hurt" face. He was insistent on wearing a shirt.  He was pretty upset that he wasn't dressed when the medicine wore off.  Jason's chin hair hasn't grown enough yet.  Maybe a donor will be prepared on the 4th of July. God Bless.