Last week we made the decision to put Dylan on the surgical schedule to get a g-tube. Then we (the doctors, OT, and I) decided on a few last-ditch things to try before our Wednesday surgery date.
The first was taking out Dylan's feeding tube again. The last time Dylan last about 36 hours on his own, but he really faded quickly after the first 12. He just wasn't eating enough calories to give him enough energy to eat more.
We decided to start last Wednesday morning and Dylan's must've been on board because he had already pulled his tube out by the time I got there! Istayed overnight that first night and boy was that a challlenge!
He did okay for the first couple of days. He took enough that they didn't put the tube back in but not enough for anyone to feel comfortable. He lost a bit of weight the first night and got right up to the point of dry diapers (not a good sign) when he seemed to start doing better.
The second thing we decided to try was Enfamil AR formula since it's designed for reflux. I'm not thrilled with giving him formula, but I will absolutely give him whatever he thrives best on and I agreed to give it a shot. I'm not sure if its the formula or just time, but he's doing we'll so we will keep him on it for now. Once he's eating consistently at home I'll try to switch back to breast milk.
On Friday Dylan started to turn a corner. He took 90 mls two times in a row on Friday night. That's 6 ounces in about 4 hours!
On Sunday morning we were staying on the surgery schedule, but the doc actually said that if he didn't backslide at all, that we could be home by the end of the week without surgery. At that point he was taking 40-70 most times but still had a few 20's scattered in which the doc didn't like.
Dylan must've heard the doc because he took 50 or more for the rest of the day and just a low of 30 overnight. (He wants to be able to sleep through the night as a present for his mama!)
So as of this morning he is off the surgery schedule and on his way to going home towards the end of the week. It looks like he'll be home before his 5-month birthday next week.
We are beyond thrilled!
This is amazing news. So happy that you are going to start new chapter in your life. Dylan is one amazing little boy. Wonder where he gets that fight from, maybe his mamma? So happy for you !
ReplyDeleteWONDERFUL news!
ReplyDeleteOh my gosh, you must be so excited! Keeping my fingers crossed for you all!
ReplyDeleteYay! How exciting! You'll be home soon!
ReplyDeleteYay Dylan! I am so happy for you all. Such great news!
ReplyDeleteAhhhh this is so so so exciting! We are beyond thrilled for you guys! Just FYI, the homecoming date can change as it gets closer. It bounced around for us between 3-4 days until they finalized it the day before. So don't worry if that happens! But it will be within just a couple days of their estimate! Yayyy!
ReplyDeleteSuch a sweet face you little man has! Too cute!
ReplyDeleteWay to go, D! I am so glad that things are going so well. Hoping all continues to go as planned and Dylan is home with you soon!
He is adorable!!
ReplyDeleteoh how WONDERFUL! My mom and I just read this and we are both so excited for you! That face is too much :) :) hope he does give you a "going home" present of sleeping through the night.
ReplyDeleteYay! He certainly looks ready to come home!
ReplyDelete