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?    

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!  

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.        

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.

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.