Update on The Incredible Devin!

Hello friends of Devin!  Dan & I are back in the reins at home, as well as driving back & forth every day to see Devin in Dallas, so we haven’t had much time to keep y’all updated.  Dan’s family has helped us out SO much the past 7 weeks, but trying to organize schedules has been nuts since this road has been far longer than we anticipated.  It has been good for us to be back at home with the boys some, even if we are all slightly losing our minds.  We are burning the candle from both ends.  Spread too thin.  Barely keeping our head above water.  Dead on our feet.  Whatever analogy you prefer; we are all those things right now.  We are trying to balance keeping life “normal” for the boys, and being there for Devin so we can have input in his care, and know what the plan is for him each day.

The last update was after Devin’s heart cath a couple weeks back.  The cath went well, and I think they were able to accomplish all that they had hoped.  No one was sure why, but before the cath his left lung would not stay up on its own, and his oxygen saturations were not staying up.  Following the cath, our doctor at first wasn’t overly optimistic that the cath would do much to improve those issues.  He said everything looked good when they were in there, and there was little to nothing that needed fixed, which was both good and bad.  While being intubated for the cath procedure, they happened to get a mucus plug out of Devin’s lung.  This was a major plus, allowing his lung to inflate immediately.  So that was good, and something not foreseen!

The week following the cath, Devin was been able to keep that lung up, as they started to wean his breathing support.  He seemed to be doing so well, but about mid-week he started to have symptoms that his body was not handling it as well as we thought.  Although his heart rate, O2 saturations, and respiratory rate looked normal; his stomach started to display symptoms of a sickness caused by too little oxygen or blood flow to the intestine.  So, that caused some setbacks costing us another week, and as a result we had to go back up on his respiratory support to give his body time to recover.  This was so hard for us after we felt like we were making some good progress.

So, we are back to having him on c-pap.  He’s on his big scuba mask most of the day, then doing “trials” on his little cannula to see how he can handle it.  That is the plan for as far as we know!  Our hope and prayer is that Devin can be home with us for Thanksgiving!  That will all totally depend on how he handles breathing with less and less support.  So there is no real timeline or date that we’ll be out of here.  Just a hope we have that he can keep making steady progress with no more setbacks!!!

I had originally hoped he’d be home in time to trick or treating with the boys last night.  Instead we brought the rest of the Avengers up to see the Incredible Devin.  It is pure chaos having them all in the his ICU room (and we are grateful the nurses and staff love us so much), but it is great to have them all together for just a little while so Devin can be reminded of all he’s missing at home.  Noise.  He’s missing lots, and lots of noise, and craziness.

Please continue to keep our amazing little man in your prayers.  Be praying that his body could handle and thrive with less support, and that he can be home in time for his first Thanksgiving, and to meet his Grandpa for the first time who will be coming from Colorado to see his mini-me.(Although, Devin now has more hair than Papa.)  We look forward to sharing those sweet moments with you!