Because in this photo we are reminded yet again that God is in control - He is in every detail. God so carefully ordains the timing of everything. Even though we may never quite understand in our lifetime why a certain thing happened at a specific time, we can trust that God's reasoning far surpasses our limited knowledge.
The "standby" screen in the picture above? That's the screen on the hospital-grade ventilator that Samuel has been on since birth. The blue unit with it's screen lit up? That's a HOME ventilator. Yes, H-O-M-E. That's a type of ventilator that Samuel could actually leave the hospital with. It's not as powerful as the "cadillac" hospital version, so it's not uncommon for the transition to take lots of time and many failed attempts.
On Friday they had tried to transition Samuel to the home vent, but he had failed in less than a minute - which is quite unusual to fail so quickly. So when Monday rolled around, inquiring minds were baffled by the fact that Samuel hadn't seemed to handle the switch even for a moment. So they decided they would try again.
But when they turned on the unit to match the settings? The settings from Friday's attempt were still programmed in, and they realized a LARGE mistake had been made which caused Samuel to receive MUCH less support than he was used to getting. No wonder he seemed like he was drowning so quickly!
Let me tell you that, at this point, it would have been easy to point fingers and get upset about a mistake made. But to be honest? That didn't even cross my mind. What ran through my mind immediately (and I'm pretty sure came out of my mouth too) was praise and thanksgiving! Mistakes? Those happen. Samuel wasn't any the worse off for it. Sure, we had spent the weekend somewhat discouraged, and we were worried about the upcoming transport which would also require Samuel to be on a less powerful vent, but we continued to trust God to work in ALL of the details. There must have been a reason for Samuel to not transition before the weekend - even if it was just God teaching us the lesson of trust, yet again!
When they transitioned Samuel on Monday? After putting in the correct settings? He hardly noticed! Not only that, but lots of times when transitioning to a home vent they have to go up on the settings some to try to actually match the support that the more powerful ventilator was giving. But they didn't have to bump Samuel up on any of his settings! Within 30 minutes he was sound asleep - the only difference being a higher than his "normal" respiratory rate.
Today? Two days later? Samuel is STILL on the HOME ventilator, and seems to be doing even better than when he first got on it.
ALSO on Monday, we were told that we would be flying out of here on Wednesday at 11! We were ecstatic and nervous all at the same time, but mostly just excited to get back to our home state!
But that was all pending insurance...which yesterday ended up denying the initial request for transport. So today the wonderful team here is working through some extra steps to appeal the insurance and try to get us back to Arkansas Children's Hospital. We are so grateful for the countless hours they are putting in to try to make this happen! Because of this, we will likely not be leaving today, but it could still be by the end of this week if insurance approves of the transport.
We are trusting that God has a reason for this delay! We are trusting that His timing will be perfect! So we are not despairing today that we aren't on a plane...we are instead choosing to rejoice that Samuel has more time to strengthen first! We are looking at this as an opportunity for the team here to have more time to tie up loose ends! Besides, we've been waiting in Delaware for almost 5 months now, so what's a while longer?
And Samuel doesn't seem to mind all of the waiting, as long as he is getting attention!
- Please pray with us that insurance will approve the transport, and that it will happen in God's perfect timing.
- Please pray that Samuel will continue to thrive on the home vent.
- Please pray that Samuel's belly girth will regulate, and his intestines will be able to speed up a bit. While he is passing gas and stooling, things seem to just be moving quite slow, and his girth some days is quite large.
- Praise God for Samuel's successful transition to the home vent! This was a necessary step before we would be able to complete all of our training to take him all the way home! So we are one step closer.
- Praise God for working in all of the details!
- Praise God for such a hard-working team of people up here who are working to get us back to Arkansas!