A Reason To Party

Meet Noodles aka Lewis.  Notice anything different?

That's right.  He no longer has his gtube button.  Let's take a trip down memory lane shall we?

   +first there was the NG tube and the DREADED feeding pump
   +several different prescription formulas that ultimately didn't sit well
   +then we had the Gtube (trying out everything from a MINI One to the Mic-Key Low Profile)
   +Farrel valve bags and Hollister clamps to combat leakage as well as reflux
   +countless times the button has been accidentally pulled out
   +numerous times cellulitis caused from a skin infection around the gtube site
   +unfathomable amounts of time spent combing the internet for facts and solutions
   +four different medications to help with an unhappy, uncomfortable stomach and intestines
   +what seems like an inordinate supply of 2 ml, 5 ml, 6 ml, 35 ml and 60 ml syringes
   +at least a half dozen tubes of calmoseptine, bacitracin and triamcinolone ointments
   +bottles and bottles of stomahesive powders
   +silver nitrate sticks to burn off excess skin forming over his port
   +gauze pads, drainage sponges and elastic, tubular dressings galore
   + more weight checks then we could keep track of
   +and obviously much, much stress and worry

The tube was officially removed today at the doctor's office.  We are going to have a big party (just as soon as I can find some time to plan an appropriate celebration. Until then we will drink copious amounts tonight!).  This day truly has been a light shining in the darkness.  Thanks everyone for all your support you have shown our family with all our feeding difficulties over the years.  A new chapter begins.

We're taking Plan D for the dental game plan.  We have an appointment on Monday with one of the very few private practicing, pediatric dentists in Northern Virginia who can perform procedures under general anesthesia at Children's Hospital in DC.  LJ will be slated to have a root canal, two cavities filled, possible tooth extraction and sealants put on all his back teeth.  We are hopeful the bad tooth can be saved and will not have to be pulled but we have little control over it since it is causing Lewis a lot of pain.

Be Kind

"when given the choice between being right or being kind, choose kind."

- Dr. Wayne W. Dyer

Reunion with Old Tube-Weaning Friends

Happiness is a big ole hug from two, old friends who came to visit us this past week.  There's nothing like them!  Markus and Jeni of Spectrum Pediatrics (see this post), our wise feeding specialists, came over for dinner this past week...one night after they worked all day with another brave, tubie kid (little W) who is on the same intensive-tube-wean journey we were on this very same time last year.  I look back now and think about how difficult and challenging a time that was for us.  How much fear we had. LJ cultivated such a special relationship with Markus and Jeni; it is really so wonderful to observe.

Here is a photo capturing the first reunion.  LJ was giddy with excitement for them to arrive.  As soon as they were through the front door he practically leaped out of my arms into his old, friends' arms.  It was thrilling to witness! The total recognition of Markus and Jeni combined with the complete recall of the events surrounding his tube wean gave me utter conviction that we didn't harm him or his relationship with food one iota.  In fact, we did a 180 degree opposite.  LJ loves these two magic-makers and LJ as you may well know, has a love-affair with food.  Hard work pays off.

That night, we told stories, we listened to stories but mostly we just marveled at the road we've been on.  Its hard to see when the reality is what we wake up to each and every day.  But when your dear friends haven't seen LJ for a year, it somehow has more merit when they tell you what amazing progress they see.  I don't know why our individual points of view are so widely different from moment to moment; we are witnessing the same human being.  I suppose us parents need to take the time to see how the day unfolded and see what worked and didn't work.  I suppose its because as parents, we watch differently. Morning. Noon. Night. Feelings and thoughts arise and subside and there's always worry.  I suppose as parents we need to be quicker at seeing where we've been and putting forth our efforts on that next path without so many questions and doubt.

As Markus and Jeni continue their work, I pray for little W that he maintains his endurance and focus to stay on this road to becoming an eager eater.  Sending W's family the patience, strength and discovery of hope. With gratitude and awe for two old friends who took such beautiful care of our boy. With admiration toward little W's family.  There's something special about our old friends.

And with that, we raise a toast to LJ's tube removal in two weeks.  We have cause for celebration!

Dental Drama

Indecision makes me feel unsettled.  I wish I could tell you what we are gonna do about LJ's cavities but we don't seem to have a clear solution.  We met with the pulmonologist last week who expressed concern for LJ's airway being compromised if we get his cavities filled under some sort of sedative (eg valium or ativan).  He could aspirate if he's too conked out and unable to swallow his own secretions (which means it would go to his lungs and he could develop pneumonia).

Two cavities!! That's all we're talking about here.  Seems so ridiculous that two measly little cavities could stir up so much controversy at the home-front.  He is only 3 so I'll have to give him that.

That said, its all or nothing. We either try to get him strapped into a papoose board (think straight jacket) and go cold turkey without anything to calm him down in the regular dentist office setting & pray that we can talk to him and keep him calm enough that he won't aspirate on his own secretions.  (I'm making Josh take the morning off to help out with the hysteria.)  The alternative seems to be to have it done under general anesthesia at a different, private office where the dentist has the resources to protect kids like LJ with potential airway issues. Unfortunately, as we love our pediatric dentist, they don't have much experience with kids like LJ.  We've got a consult appointment with Office #2. There's still the chance that they may see LJ and recommend the procedure be done as an outpatient at the hospital.

I have an appointment for Office #1 to try cold turkey next Friday, March 16th.  And back up plan A is to book an appointment at Office #2 to try under general anesthesia.  Plan B, Children's Hospital.  Who knows what to do? Who knows what to do?  "We're going on a bear hunt.  We're going to catch a big one.  What a beautiful day! We're not scared....We can't go over it. We can't go under it.  Oh no!  We've got to go through it!"  ~ Michael Rosen

PS My dad is doing well.  He has a follow up appointment with the Orthopod today!  He might be going home on Thursday. Big sigh of relief.