WALKING

That's right.  Our little guy is walking.  Not just taking a few steps; but full-blown meandering around the house whenever and wherever he wants.   Things will never be the same. 

It all happened rather quickly.  He was taking a few unbalanced steps for his physical therapist last week, then after she left, he kept taking more and more until he realized he could do it on his own. He can even stand still and balance himself without moving.

Hard to believe this is the same kiddo who spent eight months in the hospital attached to so many machines that he couldn't even turn over without setting off several alarms and ripping tubes and wires from his arms and legs. 

He even has his first real pair of shoes.  He was specially-fitted last weekend with those little white baby shoes and some custom orthotics to help correct some over-pronation (inward slanting) of his feet when he walks.  His PT thinks the problem will resolve itself in a matter of months.

Even though he has these fancy new kicks he still prefers to go shoeless, not surprisingly.

every breath he takes

There hasn't been a single night in Zachary's 18 months that he hasn't been on a ventilator or been given supplemental oxygen to help him breath and heal from his scarred lungs.  That could change soon, relatively speaking.

We got great news from the pulmonologist yesterday who told us we could stop giving Zachary the extra O2 he's been getting (which he only gets now when he sleeps) unless he needs it!  So as long as the O2 saturation in his blood remains above 92% he won't need the extra oxygen. 

That's good for a couple reasons.  First, there are side effects to prolonged administration of O2 in children, such as reduced respiratory drive and dependence on the additional oxygen.  Second, it is another obstacle that needs to be hurdled before we can stop putting Zachary on the ventilator at night, which if all goes well, could happen as soon as September.

Right now he gets about a 1/4 liter of flow when he sleeps on the vent.  That equates to about 23 percent O2.  (The air we breathe is about 21 percent O2, so you can see it's not too much).  The extra boost has helped maintain his oxygen saturation above 92%, which studies have shown is really important for kids like Zachary with chronic lung disease and pulmonary hypertension.  Our "sats" as those in the know refer to them are normally about 95% or higher. 

Zachary has taken a couple naps since the new orders and has done well without the added O2.  He kept his sats above 92 percent without any additional oxygen.  When he slept last night though, he needed a little booster, probably because he was sleeping deeper and breathing more shallowly.  He was able to maintain his sats with just 1/10th of a liter.   Not bad for his first night if you ask me.

Oops, as I am typing his sats have dropped below 90% while he's napping.  It went back up quickly though so I'm not giving him any O2 just yet.  I know his sats because we have a pulse oximiter, which is a machine that allows us to continually monitor his O2 saturation and heart rate.  There's an elastic band we put around his foot to which a probe is attached that shoots light through his foot that makes the reading.  I like to measure my sats every now and then just to make sure I'm ok, but that's another story for another day.

The next big respiratory milestone will be a sleep study in mid June, which will help determine whether he can maintain his sats while sleeping off the vent without having the carbon dioxide in his blood rising too much and causing problems.  If so, the vent weaning can begin.  If not, no changes until a repeat sleep study in December.  Keep your fingers crossed.

walking . . . kinda

TEAM ZACHARY UPDATE

http://www.marchforbabies.org/personal_page.asp?pp=4157841&ct=4&w=5302475&u=zacharywhite

It's crunch time! 

Zachary's team in the March of Dimes March for Babies is in fourth place in fundraising for the walk, which takes place in just 29 days.  Please help us reach our goal of raising $3,500 to help fund research to stop premature births and help families affected by this life-changing event. 

If you are interested in walking with us, or donating to our effort, please click on the link above.

Thank you all for your help!

black and blue

It has been a rough week for both Zachary and Sammy. 

First, late last week, Zachary grabbed the cat's ear and somehow separated the lining from the rest of the ear, causing it to fill with blood.  Sammy went to the vet once to have his ear drained but the blood kept coming back, so he had to have surgery, where he got 20 stitches, to put everything back together.  He's doing fine, though his ear will probably be floppy from now on.  And I'm not sure he'll be as accommodating when Zachary tries to grab him in the future.

Here's the poor guy shortly after we got him back from the vet.

Zachary had his own mishap earlier this week when he slipped on the stairs and cut his mouth near the gum line.  We couldn't stop the bleeding so we had to take him to the ER, where it took them some time to get it under control.  We were all covered in blood by the time we got to the hospital, though he was the calmest one among us.  I guess after all he's gone through a little blood is no big deal.



Busy couple months ahead

There's a lot going to be happening over the next couple months on the medical front.

Tomorrow (well, today actually since it's 3:01 a.m.) we're visiting the surgeon who put in the trach to evaluate how things are going with that.  The bleeding we saw a few months back has all but stopped, though we did get a trickle or two earlier today.  Seems like whatever was causing it has abated.  We've had a few issues with granulomas, or skin growths, around his stoma (the hole in his neck).  But they don't seem to be causing too much discomfort. 

Next week we're seeing the pulmonologist.  We have good news to report in that Zachary has been weaned from supplemental oxygen when he's awake and wears his speaking valve without problem.  He still gets O2 when he naps and overnight while he's on the ventilator.  Next big event is a repeat sleep study in June to see if we can start lessening the time he's on the vent at night.

The following week it's off to the pediatrician for his 18-month checkup.  Can you believe that?  In some ways it seems like he was born just yesterday while in others it feels like he was born years ago.  I think I've aged ten years in the past 18 months.  Look like it too.

After that we'll be seeing his new cardiologist, who is monitoring his pulmonary hypertension.  He wants to do an ultrasound of his neck because he thinks he may be at increased risk for blood clots based on some enlarged veins in his neck and chest.  We'll keep you posted on that.  And he'll do an echocardiogram of his heart to see if there's been any improvement with the PH and if he wants to put him on a regimen of, believe it or not, Viagra!  The little blue pills help open blood vessels in the lungs, which lower pressures and results in less strain on the heart.  I'll be sure to ask what to do about an erection lasting longer than four hours.  I wonder if he'll think that's funny?

And starting in May, the dreaded tube wean.  I'll do a separate post on that as it nears, but basically, we'll have some feeding and nutrition experts with us every day to help us try to stop feeding Z-man liquids through his stomach tube and instead feed him solely solids by mouth.  From what we've heard it can be a traumatic experience for all involved, since the plan is not to give him his formula if he refuses to eat by mouth.  The idea is that eventually he'll get hungry enough to eat whatever we give him.  We'll see.

Not a lot of rest for the weary, but hopefully good news and continued improvement.

Zachary does the zoo

Zachary went to the zoo for the first time this past weekend.  He was all dudded-up in his monkey jacket and yellow sun hat, as you can see here:

I think he was more interested in all the kids who were running around looking for Easter eggs than he was in the animals, though he did seem to take a special interest in the baby pigs:

The zoo was a smallish community type place where one can easily see all the animals in less than an hour, which is a good thing since Zachary was falling asleep after about 45 minutes.  I think he enjoyed it, though perhaps not as much as mommy and daddy did having a more regular baby outing.

We're trying to get him out and about more often for longer periods because we have decided to drive to Florida in June for a family reunion.  It will be a 15-plus hour drive so we are trying to get him accustomed to being in the van and seeing new people, places, and things so he's not so overwhelmed, though I am sure he will be regardless of our efforts. 

We are also starting to think about how to pre-position medical equipment and supplies to ensure that we have what we need while we are there.  Packing isn't as easy as it used to be when you have to take ventilators, oxygen canisters, suction machines, and all the other needed and just-in-case paraphernalia.  (Our days of packing the night before to go to Europe or South America are most certainly over)  As an extra precaution, we're also mapping hospitals along our route just in case something goes awry along the way. 

So as the weather gets warmer we're looking for other places to go.  Any ideas?