Shell shocked

Where to start...

You know how when you're having a nightmare and you can't believe this is happening and then you wake up and it was only a dream? Well unfornately the bad dream was real this time.

It started Sunday which we thought would be the worst day for Jenson. In advance of the colonoscopy and endoscopy procedures to check his GI tract to see how it's doing since we've added the extra chemo drug to his therapy, he was admitted Sunday around 1pm to flush out his colon. They use a product called "Golytely" to remove as much as the can of the bowel before the procedure. It's administered through a tube they have to run from his nose all the way down to his intestines.

I'd been telling Jenson all day he had to have a procedure and they would need to put a tube down his nose and he wasn't going to like it. That was an understatement. He has a look of shock and horror as the tube is placed while he's gagging, gasping for air, and then hyperventalating because he's so scared. This goes on for about 15 minutes (which seems like hours), and then we get him settled down. He started to try to pull it out, so I told him "if you pull it out, they have to put it back in sweetie", so he amazingly listened and left it alone. He layed on the bed for the rest of the day holding my hand and not moving... and when a 2 yr old lays on a bed for 8+ hrs you know they're uncomfortable.

Then the poops start and go through the night.

His procedure was scheduled for 8:30am, and at 7:30 they bring us down into the pre-op area just like normal. The Director of the pediatric GI department is our doctor, so he's the one performing the procedures. It's all routine stuff (at least routine for us since we've been through it before) with them asking things like "when was his last poop", "what medicines is he currently taking and when did he last take them", etc.

Jenson is playing "angry birds" on my i-phone and in pretty good spirits (especially given he's still got the tube down his nose and was up most of the night popping). The anethestiologist (sp.) then gives him some medicine and they take him off for the endoscopy and colonoscopy procedures. For the first time, I'm not feeling horribly anxious while he's in the procedure.

We're in the waiting room with other families most of who look concerned and anxious given their child is also in surgery. The front desk calls for families as their child is done with the procedure and brings them back to the recovery area.

I see our doctor walk through the waiting room (which should have been my first clue something was going on) and get up to meet him and grab Doug. He has the report in his hand and I can see a picture of something that looks to have a dark red/black spot which I don't remember seeing before so my heart drops. He says first the potential good news (potential good news because it won't be confirmed until the biopsies come back)... "The upper endoscopy procedure went well and it looks really good in there. I couldn't find any abnormal tissue, so I just biopied different areas to send out. The colon also looks pretty good although I couldn't get all the way up there, so I biopsied a few spots in there as well."

Then comes the bad news which I'm at first assuming is they found a new lesion of some sort and that's the bad looking picture I saw. He says, "I had to switch tubes because the smaller tube wasn't going up. As I was exiting, I saw this (points to the picture and says a medical term we've never heard of)." So I ask if that is a new growth of some sort from his disease. He then says, "No. No doubt about it, I did that. I must have nicked him with the scope. This hasn't happened to me in many, many years and I'm really sorry". You can tell he feels horrible, absolutely horrible about it.

"What does that mean?" we ask. He says, "Well, it depends. If air is leaking out his stool could leak into his body causing major issues and we have to repair it immediately and do emergency surgery. If it's just a nick and no air is going through, it will heal on it's own. He's in x-ray right now to determine if there is air, so we'll let you know as soon as we get it back".

Whoa. Doug and I start crying and praying for our little boy.

The doctor comes back about 10 minutes later and says, "The x-ray shows air leaking. I'll send in the surgeon ASAP to talk to you about the procedure".

We're freaking out. Seriously freaking out and can't believe we may lose our little boy. The surgeon comes in (who also winds up being the head of the department) and explains the procedure. He says, "We can repair this. There are different degrees of severity and we won't know how serious his case is until we get in there. The biggest risk is infection and protecting him from any trace amounts of stool that may have leaked through."

The nurse then explains the procedure will take 2-3 hours, and we'll call you when it's done and with updates throughout the procedure. She suggests we go get food so we'll have energy once he's up, but honestly all we feel like doing is throwing up.

We keep praying for our little boy and crying and take our "shell shocked selves" upstairs to his room so we can at least cry by ourselves.

Doug gets the first call from the nurse that "he's doing fine, and they are about to begin the procedure".

I get the second call where the nurse says "The doctor needs you to come down and meet with him right now." What???? Why haven't they said he's fine, he's ok, he's made it through the procedure. They've never just told us to come down to meet with the doctor immediately. I am thinking, this is the worst day of our lives and they have just killed our little boy.

Longest 10 minutes ever. The surgeon comes in, and start with "He's fine." He could have said anything else, and honestly I wouldn't have cared because after that call I was convinced it was something far worse.

He goes on to say, "We opened him up and found the spot where the nick occured, but there was no opening despite the x-ray showing the air. We looked everywhere throughout his colon and small intestine, and no openings anywhere." He showed us the picture (which makes you realize how serious this operation is given you're looking at Jenson's colon) and you can tell there is no opening. So they sewed him back up and he's now got a long recovery ahead of him with at least a week in the hospital. The doctor confirmed later the x-ray did show air leaking, so I'm chosing to believe a miracle happened for my little boy.

What a morning. We can't wait to see him though because all we want to do is hug him and kiss him and tell him how much we love him.

They have him on morphine for the pain, so he is obviously groggy when we see him in the post-op recovery room. He is holding my hand and then hears his daddy's voice and his eyes open wide and light up for a minute. Awhh. He then goes back to resting.

Once he gets back to our room, he wants me next to him in his bed so we snuggle and I hold his hand all day. I'm laying next to him crying on and off through the afternoon, and at one point he says his first words since the procedure, "I sorry". I say, "Jenson, you have nothing to be sorry about buddy. You're doing great and we're so proud of you and love you so much". This also makes me cry.

He starts moaning later in the day and says his second word "Ouw" because he's in a lot of pain. They're giving him morphine every 2 hrs to help, but this is definitely going to be a long recovery.

Pray for a speedy recovery for Jenson and emotional strength for us as we support him through the recovery. It's going to be a long one.

We're hoping the biopsy results are good this time, and we'd have something great to celebrate.

Kristin