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. 

 

 

 



Drumroll please......

See that tube?  It's days are numbered!
For the first time since May 27th, Tiernan has gained weight.
Considerable weight.
For the past several months he has held firm at 24 lbs 1.5 oz.
But today?
Today, he is 25 lbs 5.1 oz!
And that is since his last weight at GI on June 27th. 
Oh, and may I remind you all that he has been tube free since July 21st?
!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I am beyond thrilled with this news! 
He had a gain of OVER A POUND eating
all. by. him. self!
But wait!  That's not all!
In a matter of days, yes, days, we will more than likely be, as Dr. Stefanelli (cardio) says, "popping that button out of his belly"! 
In case you missed that, I'll say it again.
Within days, we will be taking the tube out for good. 
I kind of hope they say to take it out on Friday. 
Friday is his 2nd birthday.  That would be an awesome way to celebrate him turning 2.

The ONLY somewhat frustrating part of this whole visit was due to a lack of communication and consensus on the part of the dietitians.  Several months ago, you may recall if you are a faithful reader here, Judy (whom we don't usually see) recommended we use the tv and distractions to get him to eat.  I, somewhat reluctantly and guilt ridden, complied, figuring we would trade that bad habit for lots of calories and deal with the habit later.
Apparently now is later.
Today, Jessica, Tiernan's main dietitian, said absolutely not.  We should not be doing that.  So I am trying to put aside my considerable irritation with them for not presenting the same information to patients they share and begin the retraining process.  So now we need to eliminate any grazing and only feed him or allow milk every 2 to 3 hours.  We need to establish clear "cues" that show him it is time to eat, and turn it into play time. 
[sigh]
Got it. 
The only reason I am okay with this is that Jessica is fully aware and accepts the fact that he won't be getting 1000 calories per day anymore.  At least in the short term.  She is also okay with a possible weight loss if that is the result. 
So with the imminent removal of our safety net, we will be trading one challenge for another.  That is a fact.  However, I am beyond ready for this challenge.  I know he will continue to improve at this chore called eating.  I hope he might even someday learn to enjoy food. 

Please pray things go well with the removal.  We will attempt the least invasive method first.  We will remove the tube and cover it with gauze and an ace bandage for a few days.  When it is somewhat closed, we need to leave it open to air for several hours each day.  During meals we can cover it and then wait a half hour and remove it again. 
It will mean only sponge baths until it is completely closed.
It will mean leaking when he coughs or laughs or cries hard.
It might not close on it's own. 
And let's face it.  As my friend Amy says, there are Most Kids, there are Some Kids and then there is Tiernan.  :)  The mere fact that he is getting his tube out only a month after ending tube feeds is pretty unusual.  Most Kids keep it without using it for 6 months or so.  But not Tiernan. If there is a road less taken, Tiernan generally finds it and takes it. 
That road could include a laproscopic surgery to staple it from inside.
Again, that sometimes doesn't fully work either. 
I suspect he may need the following intervention.
General surgery to stitch it all up on the outside. 
We shall see.  I guess it can take up to a month to close on its own, so we will have to wait and see what his little body does. 

Please pray he thrives without this tube.  Some kids have to have them replaced.  This would be a horrible setback. 
In the meantime, rather than worry, we will celebrate all his victories!
Adios Tubie!!!!  Don't come back.  :)

there's no place like home

especially for a kiddo with eating issues. 
wow.  [shakes head in amazement]
last tuesday we returned from tiernan's first road trip to montana.  you can read more about that on the TnT Brothers blog if you like. 
prior to leaving, the wee t had made such fantastic progress on the wean from his GT.  he was regularly eating and drinking over 1000 calories each day all on his own.  he was doing so well, in fact, that we had eliminated his weany little 120 mL bolus altogether for the last 2 days before traveling.  he was sleeping through the night.  all was well.

until...
[cue dramatic music]
we embarked on our epic adventure.

and then he went on strike. 
he stopped eating most everything.  it was a daily battle of the wills to get him to eat things he normally gobbles up.  our big ticket items like yogurt, avocado and cheese were pretty much unacceptable. 
he would eat crackers, fruit and IF i followed him around outside i could sneak in bites of cheese and fruit bar while he was on the go.  oh, and he drank his milk. 

the other problem was he would get mad by the end and we were so desperate to get food in him we kept pushing and that inevitably resulted in massive pukeage. 
and it took j and me a surprisingly long time to realize that he is, in fact, in charge of what goes in his mouth and if we force it, we will be sorry.  and also covered in puke.
by the last 3 or 4 days of the trip we had relinquished control and tried to trust that he would return to his previous eating patterns upon return home.

this whole process was stressful and frustrating and messy and yet, i have come away having learned a great deal about my child. 

are you ready for this?

he is a normal 2 year old when it comes to his philosophy on eating.

he wants to be in charge and do it himself.  if he can't do that then forget about it. 

i had two really wonderful visits with some dear friends during this visit.  camille and emily.  they are two beautiful and fantastic mothers from whom i got much encouragement and understanding. 

Camille:
we met when I was a first year baby of a teacher at Big Sky High School.  She was a junior in my advanced girls choir.  we got along so well that when i moved out to washington we have become friends via fb.  (love that fb)
anyway, she has 2 gorgeous little girls, the youngest of whom is like tiernan's female alter ego, only without the heart stuff.  man.  she is so similar to t with her lack of eating.  although, where tiernan will eat better with distractions, this little one can't have ANY distractions.  zero.  a phone ringing during meal time will derail her.  camille looks at going on vacation as a time when her baby will lose weight.  ugh.  so frustrating.  ultimately, i must say, camille is amazing with her and inspiring to me.  it is so helpful to have a dear friend to commiserate with throughout these experiences.  fortunately i have several.

Emily:

we have been friends since high school.  she has 3 beautiful and creative little girls who all just eat, eat, eat!  her youngest is a few months older than tiernan and she was an absolute marvel to me!  the girl can pack it away!  awe inspiring. 

see that bowl there?  full of cereal? that little one ate all of it and then a second helping!  now, emily said that is unusual...she was really hungry that morning, but even one bowl full is so cool to see.  i think tiernan was impressed too.
not enough to copy her, but impressed even so.

at one point a question was asked...
is is difficult to see other kids eat so well?
interestingly, i can't recall if emily asked me this or if i asked myself.  hmmm.
either way, the answer is yes.  and no.  watching a child eat and really enjoy food is exciting to watch and super annoying at the same time.  honestly though, i get more joy than frustration. 
and watching emily's approach to mothering reinforced what i was already beginning to suspect.
i need to let tiernan do it.
and since arriving home, he has...more or less.
by our 2nd full day home, i had already eliminated his bolus again.  we are officially 5 days into the complete wean and he is doing great.  mostly because we are trying to let go.
he is so much more willing to eat things that we put on his tray if he can pick them up and we just back off.  i am even finding he needs less and less tv to distract.  he hasn't thrown up once since we got home. 

*******side note*******
i suspect the altitude in missoula messed a bit with his tummy.  could it be that his heart had to work harder and was affecting the way his entire system worked?  don't know.  a question for Dr. S

so, it appears we are back on track and though we had a wonderful time in missoula, i do NOT intend to leave home very often. 

he really likes to just have his bag and reach in to get his treats.  :)

he has discovered the joys of Flynn Sauce aka ketchup.  the fries were okay, merely as a delivery vehicle for the ketchup.  and if he couldn't do it on his own, he wouldn't do it.