Surgery Thursday for out Little Peanut!

Devin has been home with us for 3 weeks, and they have been anything less than boring.  We are so, so, SO, happy to have him home, but he is definitely a lot more work than when we brought him home in June following his first open heart surgery.  He is on a LOT more medication this time around (about 33 syringes over 24 hours) that have to be given every couple hours during the day and throughout the night.  He also has such severe reflux and vomiting, which causes him to wake up every few hours seeming to be in pain until he throws up, or just wakes up throwing up.  It's so sad to see him so uncomfortable all the time and as a result he's not quite as smiley as he used to be.  I don't blame him, and I know he can't feel good with all the meds in his stomach, and the constant vomiting.

So, on the subject of trying to get his vomiting to decrease, he'll be heading back in to surgery this coming Thursday to have a G-Tube placed in his tummy.  A gastrostomy tube (also called a G-Tube) is a tube inserted through the abdomen that delivers nutrition directly to the stomach.  It's one of the ways doctors can make sure kids that have trouble eating get the fluid and calories they need to grow.  This will allow us to get the feeding tube out of his nose & throat reducing the irritation which that brings, and hopefully helping his gag reflex to be less sensitive.  Because he's spent over half his life in the hospital with so much oxygen support and sedation, he just has not had the time or ability to learn to eat on his own.  Problems learning to eat are very common with heart kids, and is one of the biggest struggles they face.  We know this isn't an immediate cure, and that Devin will still have issues with vomiting, but hopefully it will give him some relief and help him be our happy little man again.  We also hope it will help him (and us) sleep a little more.

Another concern from the vomiting is that Devin's vocal chord is still paralyzed from his last heart surgery, so every time he vomits he is at great risk for aspirating and getting fluid in his lungs, which would be very bad.  Another reason why I sleep with one eye open.  We also can't hear him very well because his voice is so weak, and since it's been so far out from surgery, the doctors really are not sure if he will ever get his voice entirely back.

Please pray that his vocal chords would completely heal again.  They healed after his first surgery, but it just did not take near this long.  We know the Lord is capable to do so, and so we ask that He would!

Please also be in prayer for the surgery Thursday.  This is NOT supposed to be a very complex surgery, and we "shouldn't" be there over a week.  However, our last hospital stay was only supposed to be 2 weeks, and we were there for 11, so it's safe to say we are fairly jaded by what “should be” timelines.  Please pray for no complications, quick healing, and that the surgery would accomplish above and beyond their expectations.  We also have 3 other little boys here who are a little worried that we all won't be home together for Christmas.  And, maybe a mommy who's worried about that too.

This year has been so hard for all of us; we would just love to all be home for Christmas break together.  And, I could really go for some visions of sugar plums dancing through my head whilst sleeping...opposed to a screaming baby, projectile vomit and mountains of laundry.

While it is easy to be overwhelmed by our day to day life; I am still amazed Devin is here with us.  About a year ago we posted our first blog after we found our Devin's diagnosis.  We had no idea what the next year would hold, or if we'd even get to know Devin.  So, we do not take it lightly that he is here with us considering the odds he was up against.  Crazy schedule and all.  The more we learn about his disease, and the more we see it impact other families around us, many of whose kids are no longer with us, the tighter we hug him and praise God for his life, and whatever his life may hold.

Thank you for walking this journey with us!  We look forward to sharing with you all about Devin's first Christmas.  Having him here with us, is the best gift, and we praise God for that!