the wall

It was bound to happen sooner or later. 

Zachary hit the wall this morning.  Not the one Pink Floyd sang about or the one I hit at mile 22 of the marathon I ran many years ago, but the one where he became so hungry he simply was unable to deal with his emotions.  And it wasn't pretty.  It ended up being about a half hour of uncontrollable crying followed by 15 minutes of laying flat on his back staring into space.  Could have been worse but it was tough seeing him so upset and signing for his bottle and not understanding why we weren't giving it to him. 

We're now on day 5 of the tube wean and it is clear that it is about to get ugly.  Real ugly.  We kinda expected it.  The therapist overseeing the wean called from Germany yesterday to warn us that, based on her experience and the progress we've made so far, she thought a big meltdown was coming in the next day or two.  And it will coincide with a further reduction in the number of calories and amount of fluid he'll be getting.  The last couple days he's only received about a quarter the usual calories he had been getting before we started this torture known as feeding therapy.

Right now we're forgoing his first two bottles and offering his purees and solids instead.  If he doesn't eat anything, he gets nothing until his 1:30 p.m. bottle.  That bottle may be on its way out too this weekend, along with the Pediasure (the high calorie, sugary, artificial junk he drinks) in favor of whole milk.  The therapists have explained that there's a connection between thirst and hunger and the willingness to try purees and solids.  We basically need to get him good and hungry before he'll be open to transitioning from simply licking foods to actually biting, chewing, and swallowing them. 

We feel like terrible parents to be denying him such a basic necessity of life, but it's for his own good.  And we are doing it under the supervision of his pediatrician, an occupational therapist, a speech therapist, and a physical therapist, so he's being well monitored for any signs of distress that would halt the wean.  It's still tough though, perhaps the most difficult thing we've seen so far in his short life, maybe even more so than the surgeries and blood transfusions, and tubes and wires that were commonplace his first eight months.  I guess it's because he's self aware now compared to then.

I just wish he understood short-term pain for long-term gain.

Now that's my boy!

There's never been any doubt that Zachary's my boy.  Sit us side by side and I look like his older, fatter twin.  But today confirmed it for sure when we found out that he has actually gained an ounce since his tube wean started two days ago. 

What?

Most kids lose weight, of course.  Some as much as 10 percent of their total poundage.  Zachary's doctor set a strict limit of 5 percent weight loss, at which time the wean would have to be put on hold.  But he has gained instead so far.  His care team thinks it is because he hasn't vomited since Friday and consequently is keeping in more than is going out.  (Thank you, Prevacid, for being the wonder drug that you apparently are).

Days 2 and 3 of the wean have seen him drinking more of his bottles and getting less water.  Soon he's going to start getting less and less of the formula by bottle until, we hope, he eats something, anything.   He's starting to explore some new foods, and by explore I mean lick.  He has tasted some beef jerky, spicy chips, salty pita chips, sour apples and nectarines.  Today we are going to try some pineapple chunks and mandarin oranges, maybe some frosted blueberry pop-tarts, and perhaps some Blazin' Buffalo and Ranch Doritos. 

Part of the therapy involves modeling so he can see us eat, so we learned quickly to buy things we don't mind eating too.  Probably the only time we'll ever have this much junk food in the house.  And before anyone starts thinking about making any fat jokes (you know who you are) I've lost 20 pounds over the past three months, though it has been tough not to snack away with my boy. 

So far so good.

developmental assessment

The City's social services board came today to conduct Zachary's developmental assessment and determine his eligibility for early intervention services. 

The result:  He is eligible for services for another year because he is at least 25 percent delayed in multiple developmental areas and exhibits atypical development.  Although he's 20 months old, he functions at the following levels:

Gross motor skills:  13-15 months
Fine motor skills:  12-15 months
Self-help:  12-15 months
Expressive language:  9-11.5 months
Receptive language: 8-12 months
Cognitive:  12-19 months
Social-emotional: 12-15 months

We think his report card is pretty damn good, especially considering all the surgeries and the fact that he spent his first eight months (249 days) in the hospital on his back.  His physical therapist and speech therapist think he's doing wonderfully as well.  He is farther along intellectually than physically, but everyone expects him to catch up in the next couple years, though he may always be a small little guy. 

So good going, little man.  We're mighty proud of you!

Tube wean (day 1)

This is gonna be brutal.

Started the dreaded tube wean yesterday.  We started by withholding the formula he normally would get through his g-tube and instead just giving him water.  We normally let him drink his formula by bottle and then whatever he doesn't take orally he gets the rest through the tube.  But yesterday, instead of getting the formula in the tube, he just got water.  And he was pissed.  (See the attached video).

But the odd thing was, he didn't devour his next bottle.  Or the next one.  Or the one after that. 

Much to our surprise, he didn't drink anything at all, at 1:30p, 4:45p, or 8:00p.  We think it may be because he started taking an acid blocker on Friday because he was vomiting massive amounts, like 10 times a day. Good news is that he hasn't vomited since.  Bad news is that it seems to have suppressed his appetite.  Not the optimum outcome when his therapy is based on having him "develop a relationship with hunger."  I didn't make that up, by the way, that's what we're aiming for.

Today's therapy will be more intensive and hands on with two visits from the feeding expert.  We did get him to lick some Doritos this morning, as well as a sour apple slice.  And just now he licked some spicy beef jerky.  He turned down a rice crispy treat though.  Man I am getting hungry!

Keep your fingers crossed we make some progress today.

BARF

So my kid barfs. 

I know, I know, all kids do from time-to-time.  But my kid barfs, I mean, he really projectile vomits.  And he does it once or twice a day on good days, and three or four or more on bad ones, of which there have been many recently. 

When he was still in the hospital we were assured that most children outgrow these messy mouth eruptions after about a year of age.  But he's approaching two and things seem to be getting worse instead of better. 

None of his doctors have been able to pinpoint a specific cause for the vomiting.  The consensus seems to be that there's probably several reasons for all the spewing, such as:

• GERD, or Gastroesophageal Reflux Disease, which is caused by stomach acid coming up from the stomach into the esophagus.
• Delayed stomach empty emptying, which results in his earlier feedings filling up his stomach until there's not room for more.
• Bowel movements, believe it or not, some think he may be straining so hard to poop that it causes him to get sick (which is better than when he was a baby and stopped breathing when he pooped).
• Secretions, which when not suctioned fast enough makes him gag and eventually vomit.
• Tracheostomy tube, which may move in his trachea and make him choke and gag.

I think it's probably a combination of all these things.  He was on one medicine for the acid and one to speed his intestinal motility but they didn't work so well so we stopped them a while ago.  We thought it was better to have him vomit and not take all the pills, which have other side effects of course, than vomit and take them, and deal with their impact.  At one point, one of his doctors told us we should either discontinue the meds or double them.  Talk about confusing. 

The worst part about it isn't all the laundry (of which there is a lot) or the fact that our house smells like vomit (which it does) but the toll it is taking on him, both physically and psychologically.  It breaks our hearts to hear him wretch and know how scared and uncomfortably he is.  Makes you want to cry sometimes.  And all the vomit, along with all the antibiotics he received while in the hospital, have turned his teeth brownish-yellow and started wearing away at their enamel.

But there's no end in sight right now.  Some days are better than others.  And some are really, really, bad.  But he's such a trooper and soldiers on without missing a beat.  I wonder whether he thinks this is normal or whether he knows this shouldn't be happening? 

back again . . . new updates

Been a long while since my last post and a lot has happened. 

First, today is noteworthy because it was one year ago today that we brought Zachary home from the hospital for the very first time, 249 days after he was born.  In some ways it seems that the year has gone quickly while in others it seems like lifetimes ago.  Much has changed since then but a lot remains the same.  But we are all in a very different place now than we were then, for better or worse.

We also successfully vacationed to Florida for a family reunion.  Zachary traveled 1,920 miles back and forth in the van, met one great grandmother, two grandmothers, and two grandfathers, along with aunts, uncles, and cousins -- and more than a few admiring strangers.  The trip took about 17 hours each way, which included about 10 explosive vomits on the way down.  Fun for all.

He has also been recovering from his bout with viral pneumonia that landed him in the hospital for a week or so in May.  He's pretty much off the extra oxygen during the day that was helping him heal but still gets a little at night just to help him rest easier.  Hope we can avoid future lung infections, which are especially harmful to kiddos with bad lungs.

And we are less than a week from starting the tube wean that had been postponed last month because of the illness and resulting hospitalization.  The hope is that within three weeks he won't need the feeding tube for anything other than a safety precaution because he'll be eating age-appropriate solids and getting all his calories orally.  I am hopeful but not optimistic, though I learned early on not to bet against this tough little guy.

Hope to start posting more regularly again. 

Thanks for checking in!