Monday, 27 June 2016

Public G-Tubing

This weekend I fed Gideon at a small house warming party consisting of mostly strangers in their mid twenties to early forties.  This was the first time I used his G tube outside of our home.

We were in a fairly confined outdoor space, a small patio, so it wasn't exactly discrete.  I also didn't feel like I should isolate Gideon.  Everyone else was snacking and drinking so why should we go inside to eat?  For some reason, internally it felt like the old breast feeding debate reinvented.  Should I be concerned about making other people uncomfortable?  How would I feel if people stared?

I decided that all of it didn't matter.  I casually lifted his shirt, while distracting him with a book, and hooked him up to his extension tube.  I sucked up his formula in a syringe and went at it.  I had tried feeding Gideon orally, as much as I could, but it was hot and we were in a strange setting, so he was just not really into it.  I had to push more than I normally do into him via the tube.  It seemed to take forever.

Yes, some people looked uncomfortable, while others looked with wide eyes before turning to conversation with others.  Some had a sad look of pity in their eyes, others started up a conversation with inquiries into our situation.  Yes it came across a little awkward as I tried to talk to others, casually inserting comments into their conversations every so often, as I held a syringe and tubing in my hands.  I didn't care.  I was owning it. I was overcoming social taboos and claiming public G-tubing as normal.

I've never seen anyone g-tubing in public.  I'm sure parents do this all the time.  They really are more common than you might think; our surgeon said they do 2-3 G-tube surgeries every week.

I'm not sure what advice to give to others who come across someone G-tube feeding in public.  I think all the reactions we received were quite normal.  What I wouldn't do is intentionally make anyone feel out of place.  I don't mind answering questions about the G-tube or our situation with Gideon.  I don't mind ignoring the elephant in the room, in an attempt to normalize it.  What would make me angry is if someone assumed things about Gideon because of his G-tube and vocalized these assumptions or if someone verbally spoke up about loosing their appetite, while guzzling wine and asking us to be more discrete.  I'm so glad there was no one like that at our first G-tube outing.

I think the next time I see someone else G-tubing in public, I'll smile to myself-  as a nod to mutual understanding and in support of societal norms.


 


   

Friday, 24 June 2016

Coming to Terms with the Tube

I have mixed feelings about Gideon's G-tube. 

It looks so foreign, not in a cool way like a piercing or a tattoo but more like a workplace shrapnel accident.  I'm sure with time I'll come to embrace it but right now it's just hard to swallow.  I wonder if I'd feel different about it if he had it right away.  If Gideon couldn't eat at all right from the get go, I'd probably have nothing but praise for the direct access to his stomach.  The G-tube seems to mock me or challenge me.  It's trying to one up me.  I look at it and feel pressured to feed him, to get as many calories into him as possible. I offer Gideon a bottle and I try to coax him with songs and games, anything to get him to bite onto that nipple.  Right now the feeding plan involves me feeding him orally on a very set schedule.  Whatever he doesn't eat, I offer to him orally about an hour later and whatever he doesn't eat then, I put into the G-tube, followed by a "flush" of water.  The trick about it is that you don't want his stomach to be too full or he might throw up.  It gets even more challenging when I try and feed him solids.  These have less calories than the formula, sit heavier on the stomach and for some reason have not really been taken into account in "The Feeding Plan" given to us by the dietitian. 

I feel like I have a newborn again.  

So far we have only used the syringe to feed him through the tube.  There is also the option of using a pump.  With this option you hang a feeding bag on an IV pole and thread the tube through the pump, like threading a sewing machine.  You hook up the tubing to his G-tube and the pump will slowly feed him over whatever time frame you program the pump for.  This option might be helpful if Gideon is feeling nauseous.  Being able to feed him a large amount slowly over a longer period of time is much easier on the stomach than a quick large bolus.  Some parents even do this while their child is sleeping.  

We had a weigh-in yesterday and Gideon is over 18 pounds.  Obviously his growth is not as dramatic as we would like, but I know the G-tube will help us work toward our goals.

Bring on the catch up weight!   

Monday, 20 June 2016

Caffeine and the Walking Dead

Exhaustion.  There is no other word for it.

Yesterday after we were discharged, we drove to my sister's house to pick up Alexander's health card and to break up the drive home.  There were birthday veggie burgers, streamers, a dancing golden retriever, lot's of presents and of course cake and candles.  Alexander had a very nice birthday celebration, despite the chaos of discharge and long car rides.  The Ronald McDonald House even let him pick out a toy, before we left, from "the room that pirates leave toys in", in honour of his birthday.  This year's gifts seemed to centered around Star Wars, Lego and Dinosaurs.  We didn't get back home until after 7pm.  About 10 minutes after we got home, we received a call from the community nurse asking if she could come over for a consult.  It was close to 9pm before she left.  John and I both wanted to crash but Alex was having a hard time settling after all the excitement of the day.  It was closer to 9:30 before he was still.  Gideon woke up maybe twice last night and I'm sure my snoring kept John up most of the night.  This morning we had Physio and OT over and now the community nurse is on her way over.  I think I'm on my third cup of joe.

I just want to catch my breath- that or shower.  Hmmmm... breath or bathe?

Got to go, nurse is here.

Sunday, 19 June 2016

Discharge Today

They surgery team came in this morning and took out the buttons holding his stomach and gave us the all clear to go home!

What a great day!  Father's day, Alex's birthday and now it's discharge day too.
So much to celebrate!!!

Saturday, 18 June 2016

Upset Tummies

Alexander and John came yesterday afternoon.  It was so nice to be reunited as a family.  But then at supper time, Alexander began to throw up.  Really?  John told me he threw up during the night too.  Now they have to stay away from the room so Gideon doesn't catch it.  I'm a little worried he may have already caught it.  Last night Gideon threw up and he was really fussy and seemed both nauseous and in pain this morning.  He was refusing the bottle and was even pushing me away when I tried to hold him/comfort him.  He's doing better now with some anti-nausea medication and more Tylenol.  I just hope it's not going to turn into something more.  Part of the pain problem might be due to a hematoma (a swollen blood clot) that has developed by the insertion they made in his bellybutton.  It's also really bruised looking.  Poor little toad.  They are hoping to take out the buttons holding his stomach in place tomorrow.  These might be causing some pinching too and hopefully he will be in less pain when they are gone.

The good news is that Gideon passed his Milk test and they didn't see any significant signs of aspiration.  This means we can continue to feed Gideon orally and just top him up through the G-tube!!!  I am really happy about this because it would have been really hard on both of us if he had to stop eating orally.  It's such a comforting thing and a means of connecting with him.  Also, I'd hate to see all the hard work he's been doing to better his oral motor skills and the progress he's made in the fight against oral sensitivity issues with textures/tastes go all to waste.    

Here's to better days on the horizon and hopefully Alex will feel better for his birthday tomorrow.  Not exactly sure where the celebrations will be held if he's still sick.  Maybe we should just push it off a day or two.  Do you think he'll notice?    

Thursday, 16 June 2016

Winning the Battle

We had a really good night.  Gideon is not in as much pain, he is no longer taking morphine and they just took out his IV.  (Oh what a stinky stinky hand) He is alert and settled.  He's only thrown up three times- twice while trying to give him oral Tylenol through a syringe which he has always protested over and once after the first oral feed which he drank so quickly, it's no wonder he threw up.  I think the plan is to keep him in for a few more days so they can make sure the feeds are going well, to remove the buttons pinning his stomach in place, do a special test to see if and how much he might be aspirating and to make sure he his bowels are working.  Poor little toad has not pooped since Sunday.

Thank you to all my friends and family for all the love and support; the phone calls, emails, flowers, thoughts and prayers were really really needed and very appreciated.  My spirits were low but now I feel lifted.  I am far more at peace about everything and Gideon seems to be doing so much better.  God is Good and a Multitude of Prayers does Miracles!  

Wednesday, 15 June 2016

Caught a Break

I feel like a bundle of nerves; exhausted, on edge and chilled.  I wish I had more sweaters with me.  The xray study went well and everything is in place. (Thank you Jesus)  Gideon has been sleeping off the excitement and I've been trying to distract myself with a mediocre detective novel.  I keep envisioning the G tube popping out and imagine how that must feel.  I can't help but feel a little nauseous.

We have been given the OK to use the G tube again and that we can even try to do a little oral feeding too.  It seems that this set back was only temporary.  I just hope it doesn't have an impact on the pain management side of things.  The nurse brought in a big elastic pressure band to slip around his abdomen.  I guess this is to prevent more tubes from popping out.  I look at it and wonder if they trust me to move him around.  I know this is just the guilt talking, still I can't help but feel a ping of deflation.  Like I'm failing in this.

Things will get better.


Set Backs

I cradled Gideon this morning, with his head on my shoulder and his knees tucked high.  He fell asleep.  When I placed him back down in the crib, I heard a "pop" and Gideon was no longer so content.  Nervously I lifted up his gown. I swore.  Four letter words came flooding out my mouth as my heart began to race and my feet turned to pacing.  I rang the nurse bell, opened the door and my small voice said "Hello? I need some help.  I think his tube came out!"  Tears, panic, whispered swearing, consoling as the nurse went to find a catheter to place in the hole.  We had to wait for someone from surgery to come.  A smooth insertion and a quick tape.  Gideon was not too hard to console.

The nurses left and things were a little calmer.  I turned to distracting him.  He seemed uncomfortable and was moving around.  I checked his belly and the temporary tube had come out and there was more scrambling for nurses and supplies to find a tube that fits.  Where is the guy from surgery?  Now his tummy is leaking.  It's hard to secure the new temporary tube in place.  Did you just wipe those secretions with his gown?  Thoughts of antibiotics swirl in my head.  Please Lord, no infections.  He's fighting so hard.  He hates being held down.  He screams and I try my best to console.  The new temporary tube is in and layers of tape make a mess of the site and we wait.  

I feel shaky.  

I sit in a chair and they place Gideon on my lap and I try to make everything better, though my songs and comfort only go so far.  The doctor arrives.  He asks what has happened as I place Gideon gently back in the crib.  He inspects the mess left by the nurses.  His student holds down Gideon's legs that try there best to flail and I sing "Black Bird" by The Beatles while holding his arms.  Sticky, wet tape is removed to reveal the tube inserted into the stoma.  The doctor sucks back some stomach juices with a syringe to make sure the tube is placed were it should be before removing it.  Yellowy, brown secretions/juices bubble and ooze out the hole that leads to his stomach.  I think my eyes grow a little wide.  At least this time, the doctor asks for some gauze and he gently sponges his tummy.  He uses a syringe to deflate the small ball of fluid on the Mic Key G-tube that came out and then lubricates it before sliding it into the stoma.  He re-inflates the Mic Key (with more fluid than before to hopefully help it to stay in) and tries the syringe again to see if he can suck out any stomach juices to confirm the placement.  No dice.  By now my singing is having no effect on Gideon's demeanor and it feels like a slight failure on both our parts.  The doctor informs me that even though he couldn't confirm placement, he thinks that the stomach should still be attached, as the two buttons holding it in place seem fine, and that there is no play/wiggle room happening with the Mic Key so everything seems to be in place.  He will arrange for a study done under xray to confirm before we use it again.  

Worn out, it doesn't take long for Gideon to crash.  He's still sleeping now.  

I, on the other hand, am buzzing with adrenaline and coffee, nervously awaiting the porter to bring us to xray.

Please Lord may this set back not be too great.
The guilt is killing me.        

Tuesday, 14 June 2016

Unsettled Sleep

Last night was rough.

Gideon was really hard to settle when he woke because of his pain and he seemed more uncomfortable when I picked him up than when lying down.  The only thing I could do to calm him was to  bend down close and brush my hair across his fingers until he grabbed hold of it himself.  I'd chime in with the phrase "You found Mommy's hair" and for a moment he would calm.  I sang to him while he held my hair and he would drift back to sleep.  Sometimes it worked.  Sometimes I had to call the nurse.  The doctor came in this morning and suggested an increase in his pain medications.

This morning he woke up uncomfortable and sad. Right now he has settled - Thank you Jesus.

I need coffee.

Monday, 13 June 2016

Now Comes the Pain

Gideon awoke with a scream.  I tried to console him.  His monitor screamed in response.  Where is that nurse bell?  Morphine? Is that morphine you gave him?  Topped off with Advil?  Tears flow as my voice breaks and I can't even sing to him.  I hush and shush and rub his back and tell him everything will be ok.  I'm not sure if I'm consoling him or myself.  It hurts to be so useless.  It hurts to see him in so much pain.  I set him back down and find my voice again.  As I brush my fingers through his hair and sing softly, he calms to a quiet moan and drifts.  Sweet little one, I would take it all away if I could- God I wish I could.

Dirty Deeds

The surgery went well.  Gideon and I are now back in the room and he's sleeping comfortably.

Maybe it was the stress of waiting room, but when I saw him in the post op room, the reality of it all really hit me.  Two small white boxes sat on the crib with him labeled brightly, containing what I assumed were additional parts I would need to feed him with.  Gideon looked tired and small.  I felt nervous to pick him up, like his insides would fall out the moment he was cradled.  The nurse showed me his new addition and I couldn't help but cry a little.  My nose dripped as I tried to hide my emotions.  I dabbed it on my shirt cuff.  As I held Gideon in my arms I thought- What the hell have I just done?  Did we need to do this?  Couldn't I have just tried a little harder?  I was flooded with regret, remorse over allowing this invasive procedure.  How could I let someone put this dis-morphing, disfiguring, "thing" in my son?  What have I gotten us into?

I sang to him.  My voice soothed him as he drifted in and out of the anesthetic and his stats seemed to even out, with only the occasional alarm to advert my eyes to the monitor.  I kissed his head and cradled him close and cried only on the inside as the nurse called the transporter to bring us back to our room.  The anesthetist warned us that fluid could accumulate in his lungs.  The anesthetic is harder on him than before because of his history of repeated pneumonias.  I will have to be diligent with the chest physio.

After a short chat with the dietitian and little food on the stomach, I feel more level headed.  The nurse just gave him some medication via the G tube, so I guess it's been christened.  I think it will take some time to adjust to this new chapter -A learning curve of some sorts.  I already miss that smooth little belly that I would kiss and tickle; the raspberries that would make him laugh will have to now be a little askew.  The rational me is confident that we have chosen the right path.  The emotional me still feels a lump in her throat.

Thank you again for the love and support.              

Saturday, 11 June 2016

G Tube on Monday

I brought Gideon in to see the paediatrician after he threw up last Friday and they admitted him at our local hospital.  He continued to throw up and they couldn't get an IV into him.  They ended up putting a tube down his nose into his stomach to  feed him.  This was horrible to watch and pure torture for Gideon.  This tube came out twice while we were there; once I think he pulled it out and it came out from his nose. The second time it came out when he threw up and the end of the tube was coming out his mouth while going in through his nose... like that horrible noodle trick people do.  On Thursday we were transferred to the London hospital.  The plan is to have a G tube put in on Monday.  His current diagnosis is failure to thrive.  Even if the G tube doesn't stop the throwing up, it might help keep him better hydrated when he gets like this and it also could help with some catch up weight.
On the up side he didn't throw up yesterday and his oral feeds are getting larger. He's doing really well in my eyes.
Thanks for all the love and support.

Friday, 3 June 2016

Half Digested PediaSure Permeates My Life

Gideon has thrown up twice three times today.  His a happy little toad with no fever, cough or runny nose.  He looks perfectly fine.  He's active, he's playing and he's smiling.  What am I suppose to do?  In a couple of days, I bet there will be coughing or a fever.  He's going to get dehydrated.  How much do you want to bet he will have pneumonia before the end of the month?

F@$# this cycle! Enough is enough!