Can't Payson catch a break?

Arrrr, our little guy has endured so much in his 4 (almost 5) months of life that I was praying he'd catch a little break! Not so much! Today, he went into surgery at 8:30 am by 10:45 am he still wasn't back...Ut Oh! We knew that the surgeon was going to dilate his esophagus to make it bigger and change out his JG tube back to the button. (So, excited to have a plain G-tube button back!!!!) But, when three hours had passed I began to sweat because the surgery should have only been 45 minutes to an hour. Around 11:25 am the OR called to inform us that the surgeon was unable to do Payson's Nissen laparoscopically and after the failed attempt had to open him up. What?! How much does this suck? Poor fella! Shortly afterwards the surgeon walked in to speak to us. He informed us that he was able to dilate Payson's esophagus nicely and easily. (Remember I was worried a couple of weeks ago when we saw a string for the esophagus I for sure thought something was wrong...whew). As far as future dilation's go he seemed to think that he might need to come back for 1 or 2. This is an in and out procedure in the OR that DOESN'T require an over night stay! When I said this was his final surgery, it is really his final surgery! No more, (unless the unforeseen happens...Dear Lord, let it be over!) As the surgeon was performing the dilation they took some X-Ray's and played around with the esophagus just to check things out, so that ate a lot of time. He went on to tell us about the Nissen and mentioned that because Payson's feeds had been going straight to his lower intestine his stomach had become very small thus causing it to be harder to work with. ARRRRRR!!! Seriously, Lord have you heard of E-A-S-Y? This poor boy deserves a break! ARRRR, (I am beginning to sound like a pirate with all my ARRR's and growls). Despite his best effort and a lot of time he was unable to laparoscopically perform this surgery and had to open Payson up. My heart sank knowing what an open Nissen means...longer recovery time, larger possibility of something going wrong, a lot of pain and delay of homecoming! Yup, you heard right! The delay of coming home. One more time a delay of coming home! How many setbacks do we need before we catch a break or take the easy road? Hmmmm! How many times do we have to have the worst case scenario happen? We have been so patient, supported our son daily, stood at his bedside sacrificing ourselves, kids and work (not to mention income)...What is the point of this? Why, Why, Why? Now, there is still hope that we can get home on the 26th because we gave enough cushion in the event that something like this would happen, but now we have bigger risks. Arrrr. So, not only does Payson have a large half moon scar on his shoulder blade, two central line scars, (will be) g-tube scar, trach scar, but now he has three laparoscopic scars as well as a 4-5 inch incision right across his belly. Yup, not going up and down, but side to side. He is wonderfully made, (my sister before I had Payson had bought him a frame that says, "I am wonderfully made!" Psalm 139:14...How fitting?!) Despite all these unique medical features he is perfect and we will have to come up with some great stories he can tell. I have thought of shark attack while swimming in the Dead Sea, (get it...hahaha), or being mugged and stabbed in Never, Never Land or the possibilities are endless here.

When Payson arrived back in his room it didn't take long for him to start waking up and move around. Doing this caused him a lot of pain so then he'd bear down. By bearing down I mean not wanting to breath. So, the Dr. bagged him as they switched him from his home ventilator back to the Cadillac of ventilators. (This is a step in the wrong direction b/c he can't go home on the caddy). Currently, they have put him on a rate of 25, (the machine is breathing for him at least 25 times, normally he is only on a rate of 12 at night), is on 50% oxygen, (normally uses room air) and has many a drug on board, (can someone say Morphine and Adavan...maybe these drugs are God's break? That's a thought!) We currently are moving back our stroller walk, ventilator switch, SFC (24 hours stay to take care of Payson) back four days. There is still hope we can be outta here next Tuesday, but we will have to play it by ear. This change in surgery tacts has really kinked the plans. Oh, well! Payson, is alive, healthy and is guaranteed to soon be smiling! It still sucks though!