There's not really any candy coating this time... to tell you the truth I'm just too sad to think of any. On Monday afternoon the bottom dropped out for Samuel.
Our little guy has really bad lungs - there's no way around it. They just can't keep up with him yet. He finished his fourth round of meds for his lungs (steroids) a week before, and by Monday afternoon they wore off. I know it's not true, but it feels like Samuel is back to square one. He is back on the ventilator after 57 days off of it, but this time he is bigger so they also heavily sedate him in order to get him to relax and allow his body to just breathe and heal. They also don't want him to feel any pain. I understand all of this, but I hate seeing my little boy just lying there in the NNICU - not moving his little arms and legs, not lifting his head and peeking out at the world, not interacting, and not enjoying his music and mobile like he used to. I think the worst part is that we can't hold him. I know this is temporary, but right now my heart is breaking.
A friend emailed me this verse a while back, and I have really tried to keep it on my mind - especially now: 1 Samuel 2: 26-- "and the boy Samuel grew strong in stature and in favor with God and man."
I so want my little boy to grow strong! I've never wanted anything so badly in my entire life.
The goal, for right now, is to get him off the ventilator in one week. We are praying for this every day! The problem is, there isn't any type of prescription that will just "fix" his lungs. His BPD (Bronchopulmonary Dysplasia) is chronic and severe, and there's not a pill that just makes it better. There are lots of things we can try, most of which we already have... it's just a matter of finding the right mix of things to make Samuel better. His right side has also collapsed a bit, so we are using the ventilator setting to try and pop them back open. The docs are really thinking outside the box, and double checking his heart, getting a consult from endocrinology, and trying new things with his ventilator settings and nutrition. But, it sounds like the bottom line is that the bigger and stronger he gets, the better his lungs will get.
The doctors and nurses are amazing! They so obviously love Samuel, and that brings us such joy. He is in the best possible place! There is always a silver lining :)
But - it doesn't seem fair. I know he'll get better, I'm just not sure when that will be.
Here's our little guy the day before things got bad - with his mac daddy set-up :) Sorry, I just can't bring myself to take a picture of him right now... I know I should, so that one day I can show it to him. Maybe I'll get the courage tomorrow.