Tummy is closed...kinda, sorta.

"If something didn't go wrong that just wouldn't be right."

To quote super awesome cousin-in-law and nurse, Crystal. 

The day started out amazingly, and now I will say, suspiciously well. 

7 AM check in and pre-op went so smoothly.  T was unbelievably chill about the entire thing.  He didn't make a fuss through any of the vitals (normally this is a cry fest) and even agreed to be held and carried away by his buddy, Dr. Lord  (peds cardiac anesthesiologist) for a moment.
Funny thing...The first thing Dr. L did and said when he came in was hold his hand and say, "Someone's been busy growing some veins."  lol.  Love that man.
We agreed he would get a little oral versed (a med designed to help with anxiety and generally calms kids for the separation process) and then we just waited.  We met Dr. Holland (general surgeon) and he mentioned his surprise at the sheer number of GJ changes this kid had.  hahaha.  We discovered a shared dislike for GJ tubes in general and I knew I liked him.  :)
Then we just waited.  T attempted escape a few times and got the nurses laughing.

He played with his beads of courage....he earned several new ones as well

And his special Luke Skywalker Mariner Bear (yes...that is his full given name) that Tristan made for him the day we found out he was a Tiernan and did NOT find out about his heart.  (sorry...bitterness sneaks in every once in a while).  Anyway, Luke Bear has a special button in his foot that, when pushed, plays the sweetest little 5 year old Tristan voice saying, "I like you Tiernan."  Tiernan plays that over and over and over.  We are worried it will wear out at some point.  :(

So they took him away on time and it was clear the versed did not work.  Poor kid definitely cared.  However, Dr. Lord said he did the mask and then found a vein right away and the surgery was over in under an hour.  Dr. Holland came up and said as long as he is comfortable and drinking enough to stay hydrated he would be discharged today, but they sent us up to the med/surg floor for recovery anyway.  Just in case.

Tiernan did really well!  Usually he is way cranky coming out of anesthesia but this time he was really calm and just wanted to be held and sleep.  He chugged a cup of apple juice and then some water and then some more apple juice.  He watched some Curious George and slept some more.  We were discharged by 2:30!!!!! 

We arrived home and he was a little groggy still but decidedly hungry.  So he ate several graham crackers, apple sauce and some milk. 

He was really curious about the new flatter non leaky tummy terrain.  In this photo you can see how the incision site was pretty flat.  Well, within a half hour of this one it there was a swellling that extended the length of the wound and out about a half inch all the way around the perimeter.  Yowza.  Should have taken a comparison photo.  Or perhaps you are all glad I did not. 
At any rate, about 25 minutes later he was playing and fell backwards and bumped his head.  He was more scared than anything but then screamed and cried like crazy.  When he calmed down he casually pointed to his belly and I looked and saw what I described in the previous paragraph. 
You know that feeling you get in the pit of your stomach when you see your child is hurt?  Yeah.  Multiply by 10 at least.  Meh.
So I elected to call the consulting nurse since I was pretty sure this would fall under that "When to call" section of the d/c paperwork.  I was on hold for too long so I just popped him back in the car and off we went to tour the new MB emerg department.  I finally spoke to her en route and she attempted, unsuccessfully to locate Dr. Holland or the on call surgeon.  She finally did and called me back to tell me to continue on to the ED...when I was already waiting on triage.  :) Glad they agreed with me.
So in triage, the very sweet nurse was quite interested in his cardiac history.  When I told her he has a murmur she replied, "oh, he must have a really tiny hole then."  I said, well, no.  And she proceeded to interrupt me and attempt to explain why she was correct and I was incorrect.  At this point I very calmly explained that he, in fact, was born with a complete AV canal and his heart functions now as a single ventricle, and in fact is just one big old hole, really.  <combination head shake/eye roll>
She was then so wrapped up in his cardiac history that she completely forgot to look at his bulging incision site until after she had taken us to our private room to wait for the doctor.  But really, she was sweet.  Just a bit silly.

***side note***I hope that if I ever DO become a nurse that I don't behave like I know more about a chronically ill child than the parents of said chronically ill child.

So after waiting close to an hour in the little private room (which I requested so as to not sit in the ED waiting room with whatever germs walked in), I noticed that T was now actively bleeding from his incision.  So I stepped out into the hall and flagged down a passing nurse who assisted in getting some gauze and assured me they were cleaning a room right now. 
So after another 20 minutes of waiting with a bleeding child, I stepped out again and waited while approximately 17 people walked by until I found a nurse to check once again.  She said the triage nurse was shocked I was still waiting.  So finally after another 10 minutes we were led back to our room, where we again, waited. 
Oh and I was greeted with the requisite "So sorry about the wait.  We've been CRAZY tonight".  Yes. Got it.  What.Ev.Er. 
Doc came in.  Ordered xrays. 
Wait.
Xrays done.  He cried but stood perfectly still.  Was impressed.
Wait.
Wait some more.
First good news of the night, the xrays did not show anything amiss inside.  Meaning, the bowel and stomach were all where they should be.  Excellent!!!  I'm just going to say that I am glad my mind had not yet imagined those possible complications.  Eek! 
Waiting on the surgeon to view the pictures and make a recommendation.
Finally, the doc came in and said the surgeon could see no reason why we would need to be admitted.  The bleeding is not a major concern given the clear xrays good vitals and his normal behaviour.  So new gauze dressing applied, and we were out of there for the second time in one day. 
We surmise (J and I, with our extensive medical knowledge) that the tissue was so damaged in there that even the slightest jostling caused the suture(s) to pull out.  Dr. H removed a good amount of the bad skin, but couldn't get all of it. 
While getting into the car, the sweet valet must have noticed I was a tad on the exhausted side of things and asked, "Long day in there?"  I replied, "you don't know the half of it."  he waited patiently while I got T into his seat and then walked me over to my door and held it open for me and then closed it for me.  I'm sure he does this for everyone, but let me just say, I appreciated it.  He was very nice.  And I was/am very tired. 
Amazingly enough, Tiernan slept all night.  (normally after such disruption he is up 18 times) and has woken up with a far less bulgy tummy and a great demeanor. 
Sorry if this post is a bit rambly. I am not even going to proof this one.  I am not quite as quick to bounce back.  haha.
Thanks for all your prayers and awesome juju everyone.  We will have a follow up with Dr. Holland on Monday and then another in early October.  Soon we will REALLY be able to look at his new scar and remember when...

better than expected

so even though i expected Dr. P. to declare his stoma infected, he did not!
yet.
what he did say, was that he feels it looked better than HE expected it to, and that it is on the verge of being closed.
and it has some signs of yeast. 
so I suppose there is some infection, but not the sort we are concerned about.

here's the vicious circle in which we have been stuck:

chronically inflamed stoma takes longer to heal
stoma is leaking because it is taking longer to heal
we cannot leave the stoma open to air (which would pomote drying and healing) because it is leaking
stoma is becoming even more inflamed because it is leaking and we have to keep it covered so the acids are just sitting on the inflamed skin.
skin is "friable" (fragile, easily torn) due to the contact with the stomach acid.
inflamation causes longer healing time.

etc...

you get the picture. 

Dr. P. thought that since it is so near to closure, we could attempt to keep it closed with the use of surgical glue and steri strips.  he has seen minimal success in a few other patients using this method so we figured it is worth a shot. 

honestly, during the time we were there, though it leaked, it was not as bad as it had been earlier today or in the past week.  so that was encouraging.  we will see what things look like tonight since having it glued shut. 

possible problem:
if Tiernan pulls at it just right the glue can just rip off, and that would certainly cause much pain and bleeding because of his friable skin. EEK!

on a side note, Dr. P was super impressed with the cool wrap Nanny K designed to use instead of the cumbersome ace wrap.  he agrees with me that she needs to start an etsy site for all the great inventions she has come up with to help us with Tiernan's special needs.  i know loads of other tubie moms and dads would love these things.  and it seems the clinic could promote them for her as well.  :)  (that is unofficial, but i think they should)

so, we will call on monday with a report of how epically it failed or [fingers crossed] that it was a huge success.  if failure is the word, we will get Dr. S (cardio) on board for his opinion on how he would like us to proceed:

1. propofol sedation in either GI lab or OR for endoscopic stapling...knowing it may or may not work.  often they need to repeat this procedure a few times.

or

2. general surgery with either Dr. Lord or Dr. Borman (peds cardiac anaesthesiologists) to fully repair the site.

hard to speculate how Dr. S will lean on this one.  hopefully we won't need to find out and the super glue will do the trick!

thanks for all the prayers and good juju on our behalf.  it all makes an enormous difference!

Tiernan's Tube...

...is gone.

Saying "bye bye" to the tubie.

There were tears.  Then he checked out the tubie...separate from his tummy.

Blurry, but he is showing off his tubie free (wrapped) tummy.

There are some pretty mixed emotions going on in my brain. The overriding one is definitely relief.  I went back and read through my caring bridge posts surrounding the tube placement. 

The mere mention of a GJ tube was enough to upset me...I have anxiety because I don't want to deal with a child who won't eat.  But following discussions with the GI doc, Melissa (one of the amazing nurses from the Heart Center) and numerous other people, I am trying to accept it for the benefits it would have. 

I go on to list all sorts of things that now I have to laugh at.  I honestly thought all night feeds would help him sleep, he would not be likely to pull it out, and he would not have as many oral aversions.  [shakes head]  So very naive.

From the very start, T made it clear he was NOT on board with this whole thing. Read on.
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Thursday, January 21, 2010 6:19 PM, PST
My goodness what a week! Tiernan really let us know what he thought of that GJ tube placement! The day following, he was all smiles again and then he decided he wasn't happy after all. He went into an absolute rage, turned purple and his heart rate raced to 220! The doctors gave him a medicine to slow his heart down but it didn't work and he didn't respond to any of the narcotics that should work. They finally had to give him a drug to sedate him so they could check his heart rhythms. They were worried he was having SVTs. Those are disrhythmias in the heart and can cause a lot of problems. However, once his heart rate slowed and they got him hooked up to an EKG they discovered his rhythms were fine, they were just really fast. (Called Sinus tachycardia-we all have it sometimes). So they got him calmed down and sleeping and did an echo to check on his heart. Everything looked great on the echo which was a relief! So just as this was wrapping up, J and I had to go to our class for GJ tube training. (A thrill a minute). So Jodi, one of our amazing Heart Center nurses said she would stick around and text me updates. She even sent a picture of him sleeping peacefully. (Not sure what we would do without her!)
That night he had another significant episode, but this time it involved him holding is breath and his heart rate dropping to around 90. They finally placed him on a fentanyl drip around 11 that night. (They waited far too long, as far as I was concerned ). The next day he worked on weaning off the narcotic and beginning feeds and today he was doing much better. Even though he was crying when I arrived this am, he calmed down immediately when I held him. It is nice to see him acting like a normal baby in that respect.
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 Well, from that day on, he gagged and retched and the tube was pulled out more times than I can remember, and, well, his sleeping sucked.  To be honest, the tube part of his life has been the most frustrating experience.  So really, I am overwhelmingly happy to have it gone. 

 

That said, I am nervous.  He has only been eating on his own for slightly over a month and we have not yet broken him of his manipulative pukefests, so yeah.  I have anxiety. 

 

It has been messy.  He promptly soaked through 2 gauze/ace bandage dressings.  He stayed dry overnight and it looked like it might be closing slightly.  But it is sooooo red. The tube hid so much of the irritation.  Seeing it now is so upsetting to me.  Poor boy.  I am concerned it may get infected in this process, but worry is no good for anyone, so we will just wait and see how he does. 

 

We will keep it wrapped for the next 2 days and then begin leaving it open to air except during meals and OT sessions. 

 

Thank you all for the copious amounts of encouragement and support you have given during this nearly 2 year ordeal.  I know he would not be where he is today without having had it, but I will certainly not be waxing nostalgic over this experience.