Echo and ECMO

Owen and I slept really well last night. We gave him a little Ativan to help him rest because he was struggling to get to sleep and comfortable.  We got a solid stretch of sleep from midnight to six in the morning.  This morning I got up and showered .. yay for a private shower in our room.  This morning rounds were full of information and we are moving in the right direction. 

Before morning rounds, each doctor stops in and assesses Owen while we chat.  They are all so impressed with how well he is doing!!  Our favorite echo tech performed his Echo and there were about 10 doctors bedside to watch... you could hear a pin drop it was so silent in here. 

His echo showed some slight improvement, but it's hard to tell with the ECMO machine offering so much support because it decompresses the ventricles of the heart.  When they lowered his ECMO support settings, his heart function showed improvement and I heard many sighs of relief.  I heard a lot of positive reactions and things are looking much better.  Slowly during the day we have lowered his ECMO support settings and oxygen levels allowing his heart to work a little more. 

We are turning his ventilator (breathing tube) settings down to pulse today so that he will be doing a little more breath support on his own.  We also started him on feeds very slowly via Gtube (5ccs an hour) to get his gut moving again.    We are turning down his Fentanyl drip a little as well, adding his Bactrum and Prograf back into the mix of medications.

I am doing everything I can to keep his room bright and happy!  I don't want him to feel sad, depressed or anxious at all, so I am keeping him busy.  We read lots of books, he watched a movie on his ipad, and I read him all the letters from his classmates again.  He is getting frustrated with the breathing tube and that we cannot hear him when he speaks.  We are doing our best to read his lips and help him when he needs it. 

Tomorrow will be another big day.  We are planning on doing another Echo in the morning and we are going to trial off of ECMO.  They can't get a realistic pictures of how his heart is going to perform until we clamp off those lines.  So tomorrow we will clamp off his ECMO support while watching his function via Echo and see what happens.  We have to keep him intubated so we can increase his oxygen support if necessary during the trial.  Keep praying.  Baby steps.

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.

Bravery

Today things have been calm and steady.  Brave doesn't even begin to describe this boy.  He has been awake off and on most of the day.  He moves his legs around and keeps feeling for his gtube to make sure it's secure.  The first thing he mouthed to me this morning was "where am I?"  I told him we were at the hospital and he understood.  He remembered his heart wasn't working the other day and I told him we are just helping him get better and he shook his head yes.  He says he is comfortable.  He is not scared.  He lets us know when he wants repositioned, which we are doing about ever 30 min to an hour.  He gets his mouth rinsed out with biotene mouthwash frequently to keep it moist and he loves that.  His HR is lowering, currently at 152.  He is fluid negative where we want him and his chest xray looks great (no fluid in/around his lungs). 

Today he received ATG (Rabbit Globulin that is an antibody against T cells), Rituximab, and IVIG.  He continued on the steroids. These therapies continue back to back around the clock.  Overall, things are going about as smoothly as they can considering.  The fact that he is awake, calm and totally responsive is incredible!!  We just tucked him in for the night and I told him "Goodnight, sleep tight don't let the bed bugs bite... If they do.." and he mouthed.. "bite them back" and then smiled!!  He mouthed "I love you."  The sweetest boy in the world.  I don't like to post photos that are too intense, but this one shows minimal and I just wanted to share how amazing he looks considering.  His color is so pink, he isn't retaining fluids, and he is resting peacefully.

This morning Carson came to the hospital and I left to go be with my other two munchkins.  It's completely unhealthy to stay in this environment for too long and I hadn't walked outside in over 48 hours.  I spent some much needed time with Logan (he missed his mama) and Kam.  We all took a nap together.  I got some laundry done and did a few "normal" things to help me keep my sanity.  I came back around 5pm totally recharged.  Owen really wanted to see Kam so we brought her in.  She sat with him and talked to him for a while.  I know he really loved that.  It was good for both of their hearts! 

My dad brought up food from the Relief Society for the second night in a row. We have been given so many treats, food baskets, and offers to help.  We are sharing all the goodies with the nurses on the unit and have leftovers in the CVICU family area so nothing is going to waste! :)  We are so blessed to have ALL of you in our lives. 

If you have sent me messages via Facebook  I can't wait to read them!  I have been so busy as the hours just pass by so quickly in this environment.  I seriously have thousands of PMs and notifications on FB and I will read every last one of them!!  I will respond as much as I can but know that I appreciate every single one and my heart is full! 

Most of you know that I am about as optimistic as they come and all I have is positive thoughts about the days ahead.  Carson is my realist that keeps me in check, but I think we both are optimistic that things are going in the right direction.  I have prayed more in the last few days than I have in a long time and God's timing has been perfect.  Please continue the prayers... mostly that his beautiful heart will continue to improve.