In the same breath, we also learn a little more every day about what our little guy is up against, and we are very scared. Samuel has to grow more "good" lung. We can work towards the very best situation for him to be able to do that, but then it is a waiting game. Not only do we not know if he can actually grow good air sacs, but we also don't know at what rate they would grow.
Photo from the 4th of July... can't bring myself to post current photos yet. It's tough... his little face is so puffy due to the sedation and paralysis. It looks like our sweet boy is in a deep, deep sleep.
Today he got to a great place to be able to grow new lung! He seemed to have a very restful day... his heartrate was in a good, relaxed place, the level of CO2 in his body is down, and we were able to ween on his oxygen. All of these are things we want... and as of yesterday were very unsure if they could be accomplished. His low heartrate means the paralysis and sedation are working and he is not stressed - yea! The low CO2 level is great because that means the ventilator is working - his O2/Co2 exchange is good - yea! The low levels of oxygen are absolutely wonderful! High levels of oxygen are toxic to the lungs (and the eyes, but his look fantastic and are already fully developed). I know that sounds crazy... here's an example... the air that we breath is only 21% oxygen. Anything over 60% is toxic, which means that with high levels of oxygen, it would be nearly impossible to grow new, good lung. As of yesterday, it was all we could do to get to 80%... and as of tonight his oxygen is down around 50%, which opens a door for progress.
But, his ventilator setting are still very high. We need them to go down, but in order for that to happen, he will require more oxygen. SO - the next goal is to get his oxygen low enough that we can bring down his vent settings and increase his oxygen, but still keep it under 60%. It's like trying to create the perfect storm.
All of this, and even when the perfect storm is created (which it will be because we have awesome docs, nurses, and RTs :)), we still just don't know if Samuel can grow new, good lung, and if he can do it in time. We are playing the waiting game. If Samuel can hold on, we will re-evaluate his care plan in two weeks to discuss whether or not it appears that he is growing the new air sacs.
We celebrate each battle he overcomes, like being able to come down on his oxygen level today. We are full of hope and prayers. We also know the mountain that is ahead and the look in a doctors eyes when they tell you they can't make you any promises. Each day with Samuel is a gift! Our emotions are drained... thank you so much for all of your support and your prayers, it means the world to us. Miracle - here we come!
*We won't know more about the option of a transplant until the end of the week - which is okay, because at this point he is not stable enough to be transported anyway (pediatric lung transplant is very new and very risky, so most hospitals, including ours, don't do it). The docs at two wonderful hospitals will be reviewing our case this week.
**George and Olivia are doing really well! It's a good thing they were used to hanging out with lots of different people :) DB and I did come back to Beaufort last night and tonight to see them... we miss them so much. But, we've got family and friends that are loving on them and keeping them entertained, fed, and happy. It's been a huge gift for DB and I to be together with Samuel the last three days, and to still know that O and G are happy.
Chillin' - I am so hopeful for Samuel to do this with his brother and sister!