A Sunday Update

Owen had a good night last night.  He slept hard and woke about five times so I was glad I slept bedside with him to be here when he woke.  Today has been eventful.  At rounds this morning they were amazed at how alert and communicative Owen is with everyone.  He cooperates with the nurses and he seems okay with the situation.  He has asked me today when they are going to take the breathing tube out.  When we get to go home.  When can he eat and drink.  I love you.  He is on a very low amount of Dex (sedative) and Fentanyl drip (pain medication).  He is totally comfortable and we haven't had to use any Morphine which is incredible.  We did give him a couple small doses of Ativan today to help with anxiety before we changed his PICC line dressings.  He did great and it also allowed him to get some much needed deep sleep.

He had lots of family visitors.  Connor, Gigi, Gma Monica, Gma Vicki, Uncle Rustyn, Daddy, Kam and Logan all came in to say hello and give him lots of love.  We are super careful about wearing full contact precaution gear, scrub up and wear masks as well around Owen.  His T and B cells should be completely wiped out by now. 

I had some much needed snuggle time with my little guy today.  He is just a squishy delight!  Just what my heart needed!  Kam and Carson has really been so amazing with Logan at home keeping him happy while I am with Owen. 

The nurses do a lot of stretches and moving Owen around to keep him comfortable.  We brought his foot orthotics and tennis shoes so that we can keep his feet flexed and off the bed for four hour stretches. 

His chest xray this morning shows very little fluid in the lungs and as of tonight he is negative 800ccs, so we were able to turn off his diuretics.  This is amazing and such a great step in the right direction!!  His kidneys are working at full capacity.  If you know what you are looking at on xray, you can see the ECMO cannulas into his heart, sternal wires, picc line, and all the coils from when he was a hypoplast.  This xray tells an incredible story of bravery and strength!

Tomorrow morning will be busy.  An echo is ordered so we can see if all of these therapies are showing any improvement in his heart function.  We are all cautious, but optimistic to see some positive change.  We will talk pros and cons of extubation, the course of ECMO treatment and how to move forward from here.  A big morning full of big discussions.  Thank you for all your love.