Progress Progress Progress

Lots of progress lately for Mr. David. He is walking more every day – walking more often than scooting, and walking longer distances. He is learning some new signs, sort of. He’s still doing his version of “please” and he makes sort of a general, almost-clapping sign for most everything else. That makes sense to me, because the other signs (help, more, finished) all begin by bringing your two hands together, so it’s not surprising he has not differentiated them just yet. He’s also taking a more active role in mealtimes, shaking his head when he doesn’t want something and pointing at what he does want. He wants to feed himself more and getting frustrated when his skills don’t quite match up to his goals. His first word, “okay,” has progressed from “m-kay” to “okay” and he seems to be using it to convey actual agreement (before he would say m-kay or shake his head in response to a question, no matter what his answer really was). He still shakes his head plenty of times when he doesn’t mean it, but he is usually grinning when he does that, and it’s quite cute. He’s also making the silliest, cutest faces, and gives kisses upon request. It’s pretty great.

Two pages (Photos and Quality of Life - More Photos) seem to have disappeared. I'm working on this, but in the meantime here are some brand-new shots to tide you over:

 

(These are all from a recent trip to my Dad's - we stayed with him for a couple of nights on our way to Wilmington. Not sure if you can tell, but Simon is looking into the binoculars with his eyes closed).

Surgery Summary

Happy Anniversary, David!

Two years ago today David had successful open-heart surgery to repair his AV Canal defect, at Children’s Healthcare of Atlanta. I have written plenty about what the (emotional) experience was like for Matt and me. This is a summary of what David went through physically – some of it is hard to read, and the pictures are hard to look at, but this is everything we had to see and think about, so I’m not too sympathetic:

This is an article in the online magazine for the University of Texas. It is sort of worshipful, in the way a college magazine is going to be about an alum and chief surgeon. This was not David’s doc nor his hospital, but I imagine it’s pretty similar. The images are all stock photos, none are of David, nor did they accompany the article:

Excerpts from “To Save a Child’s Heart: Chuck Fraser and the Unbelievable Life of a Pediatric Heart Surgeon,” Tim Taliaferro, Alcalde: 

“They keep it meat-locker cold in the O.R. It smells of sterilizing chemicals. The bypass machine, a maze of tubes and tanks, whirs quietly next to another machine that keeps the temperature of the patient’s blood below freezing, inducing hypothermia. It hums like a refrigerator. Several monitors show a continuously updated bank of color-coded numbers with coordinating line graphs. The surgeon’s saw, high pitched at first, drops several octaves when its teeth meet breastbone.

Today’s operation, a complete atrioventricular canal defect  surgery, is a complex one, even for Charles Fraser, BA ’80, chief of congenital heart surgery and cardiac surgeon in charge at Texas Children’s Hospital in Houston … Fraser likes his operating room silent. He doesn’t tolerate chit chat. You can feel the force of his concentration, a total, all-consuming focus. He’s a meticulous surgeon, preferring to make his way deliberately rather than quickly through the layers of flesh surrounding the heart. When he gives directions to his assistants it’s in that nearly inaudible voice one stop above a whisper. Everyone’s on their toes. He gets everyone’s acknowledgement before stepping up to the table, crossing his left foot over his right, and holding out his hand. “Scalpel,” he says.

… Every heart surgery has four basic steps. The first involves opening the chest by cutting through the breastbone. Step two is getting the patient on bypass. For a surgeon to open up a heart, he or she must stop it, requiring a machine to then circulate and oxygenate the body’s blood. They call it bypass because the surgeon will insert tubes into the aorta and the inferior and superior vena cavas that will divert or bypass the blood away from the heart. Step three is stopping the heart and repairing it. Step four is getting off bypass and sewing everything back up.

Each step takes considerable time, and each has its particularly tricky moments. Choosing the size of the bypass tubes is one such moment: a tube that’s too big could damage the artery or vein, while one that’s too small might hinder bloodflow. And moments before you begin the bypass, the patient must be given blood thinners, which means from that point on any cut or puncture will be much harder to stop from bleeding uncontrollably.

Once the patient gets on bypass, the room goes totally quiet. The monitors that had been softly beeping go mute, and after an injection of potassium into the surrounding coronary arteries the heart very suddenly ceases beating. Now, with one quick movement, Fraser slits it open.

Even though he’s seen the insides of hundreds of hearts and has seen many scans of this one, Fraser can’t know exactly what he’ll find until he looks inside. No two hearts are exactly alike, and when dealing with congenitally defective hearts, anything is possible.

… Yet something happens the first time you peer into an infant’s open heart, formerly beating, currently stopped, while a surgeon manipulates its innards, correcting with scalpel and stitch what went wrong when some tiny strands of genetic coding crossed. The sight defies belief. This isn’t a real 5-month-old on this operating table, with its chest sawed open and its strawberry-sized heart sliced down the center — it can’t be.

… All these things hit you as you watch the painstakingly delicate handiwork a heart surgeon must perform to correct a problem without causing a new one. Infant hearts are tiny, the arteries and veins smaller still. There’s little room to maneuver the sharp surgical tools. The heart is bloody and slippery, and manipulating its shape or orientation to get at the chamber that needs attention calls for an elaborate system of strings, which must be passed through sections of heart muscle like a marionette then pulled gently to roll the organ left or right, up or down. Meanwhile, the baby’s life hangs in the balance.

On his way toward the heart, Fraser had cut a small piece of the pericardial sac, which surrounds the heart and lungs. From that he’ll create a patch to separate the two atria, another the two ventricles, and repair two valves that let blood into the heart. Measurement after measurement, stitch after tiny stitch, Fraser goes to work. His hands move rapidly and with purpose. He changes instruments often. An assistant squirts his hands down to keep the latex gloves from sticking. There are a few false starts, a couple of darnits uttered, but in time the patches are in and he stitches the heart back up. Three steps down, one big one still to go.

… Every time they try to back off the bypass, the patient responds poorly. The problem doesn’t appear to have to do with the heart, which is beating fine. Apparently the lungs are to blame.

Fraser seems mostly frustrated at not being able to do something. There doesn’t appear to be a surgical fix for the problem, so he must stand there, his hands restless, watching the monitor, hoping in the seconds between each update that the numbers will improve.

As the minutes turn to half-hours, the experience drives home what an audacious idea the notion of heart surgery is. There’s no such thing as a minor surgery. It is risky, intrusive, Promethean work trying to fix what nature got wrong. And even the very finest surgeons in the world sometimes get stumped.

Fraser tries again to back off the bypass, this time in smaller, slower increments. Ninety percent. Stop, wait. A few beeps and a slight downward slope on the graph. Then steady. Now 85 percent. A few more beeps but no crisis. Slowly, and with caution, they back off the bypass completely, and in time Fraser is satisfied that the patient is stable. He begins the long, slow effort to stitch up the child’s chest and wire shut its sternum. At 6:15 p.m., he finally steps away from the operating table for the first time.

When surgery goes well, and Fraser manages to fix and restart the heart, ease the child off of bypass, and sew up its chest; and when, after eight nonstop hours of intense concentration, he finally steps back from the operating table; and when, hours later, the infant opens its eyes and sees its parents’ faces, the whole episode seems, in a word, miraculous.”

To see David's surgeon, click here

We have had sort of a … not love-hate, but maybe love-dislike, relationship with both the surgeon and David’s regular outpatient cardiologist, Dr. Aaron. For the record, they both have fallen into the “love” category for over a year now. We totally acknowledge any dislike could be justifiably responded to with, “Hey, don’t shoot the messenger.” We met them both on two of the most difficult days of our lives (getting David’s diagnosis, and the surgery) so there may always be some degree of distress associated with them, no matter how great they are. And they are great, both of them. Hey, docs: You are the best at what you do, and we can’t thank you enough. Our beautiful little boy is doing so well, and you’ve both had a big part in that.  

I'll close with this image because Dr. Aaron told us before we left for Atlanta it was difficult to predict success because even with the best echo equipment, "the surgeon doesn't really know what he's got, until he's got the heart in his hands." This is confirmed by one of the paragraphs above, but at the time it was a really hard thing to hear. And of course David's heart was in his body the whole time, but this is still how I think of it. 

Miss(ter) Independent

I am currently (Friday, 11:30 a.m.) watching David taking an early nap – he was pretty worn out after his new home-based teacher worked with him for an hour, and I’m hoping an early nap and earlier wake-up time will help him get to sleep more easily tonight. He’s had a really hard time going to bed since we got back from our little trip. I think part of it is that he slept in his porta-crib all last week, and now he’s having trouble adjusting to being back in his little toddler bed. I’m hoping and assuming this will be over with soon, because there’s a lot of screaming (by him) and putting him back in bed involved.

The new teacher (her official title is Community-Based Rehabilitation Specialist or CBRS) was quite pleased with how he’s doing developmentally: verbally, gross- and fine-motor skills-wise. He is making some new little funny high-pitched squeaky sounds, and is working on the sign for “finished/all done.” She helped him build a wall of blocks and made up a little song to go along with tapping each block in sequence. He was able to tap the blocks in the same sequence and in the same way (with just his pointer finger) and he was (sort of) approximating the rhythm of the song, though with slightly different sounds.

Simple Happiness

No posts last week because we were on “vacation” in Wilmington, NC. The quotation marks are to signify the status of Vacation for the kids, Endless Parenting Tasks for Matt and me. We had a lot of fun, except that David had a lingering tummy virus, and has not taken to the ocean any better than on our trip last year. Simon had a blast, on the beach, at the zoo, fishing on the pier … he is never going to stop talking about it, never.

Last Wednesday I had one of the greatest feelings I’ve ever experienced. Matt and Simon (and our friend Derek and his 2 kids) went to this Monkey Joe’s place, with all sorts of indoor bouncy castles and slides. I really didn’t think David would enjoy it enough to justify the price of admission (next year, I bet), and although I felt a little guilty about that, I’m so glad I didn’t take him in, because of what happened next.

He and I scooted a few doors down to the Harris Teeter, which has a small Starbucks café inside. I was a little apprehensive – David was getting fussy and sometimes those places don’t have anywhere to sit. There were several small tables at this one, but while we (I) ordered he was so grumpy I was afraid to try having him in the vicinity of a hot cup of coffee. But then the lady gave him some free juice, and that plus his regular snack of a cereal bar saved the day.

It’s a little hard to describe exactly how this was so great, because it’s such an ordinary happening, getting coffee. But my latte was extra-good, and once David settled down he seemed to enjoy himself. He looked at everyone who passed by, and he got lots of grins in return. He did great with his snack (no crumbs), didn’t offer to reach for my coffee, and did a couple of really good “please” signs (he’s picked that one up really quickly, only about a week) and even one “more, please.” He’s such a little delight, to everyone who sees and meets him. I remember looking at him several times and thinking, “I’m so glad he has Down syndrome.” That likely sounds odd to those of you who are not parents at all, or parents of “typically developing” or “neuro-typical” or whatever you want to use instead of “normal,” but … while of course we want people to see him as DAVID, not just as his diagnosis, and he is (much) more than his diagnosis, but wow, it’s in every single cell of his body and yeah, it is who he is. It affects how he hears and sees and learns and speaks. It affects the way his heart beats and the way his lungs work, and it’s the cause of his “short stubby fingers” and the extra space between his big toes and the toes next to them (he uses this to hold everything from crayons to small books).

There was a wonderful feeling of peace and calm, and I had one of my “it’s all going to be okay” moments, which have been few and far between of late, but this one was extra-long. Usually it’s only a few seconds, and by the time my brain really registers it, it’s gone. But this was … nice.

We had another lovely snuggly moment later at the beach, when David was busy being unhappy with sand, waves, and life in general. We’d tried holding him up on our waists while the waves hit our legs, dipping just his feet in the water, sitting him in the sand – you name it, it was disliked strongly by Mr. DM. At one point he was really crying hard and I had him standing on my lap, facing me with his arms around me and his head on my shoulder. I whispered over and over, “Don’t worry, I’m not going to let you go … I’m never going to let you go.” Part of that was literal – I would’ve sworn a blood oath that he’d never get so much as a bath again, if he’d just stop crying; but part of it was (a) overall parenting love/concern and (b) flashback to our time earlier, and my reluctance to ever let him out of my sight – to protect him from anything and everything bad in the world. And of course that’s impossible and not even (exactly) what I would want, but hey he’s only two so for right now, I’m okay saying, I’m never going to let him go. J

A less-blurry standing photo ...

David hanging out at Grandpa's 

Sy in the Surf

 Several of my pages (“Shiphrah/Puah,” “Exodus Things,” and “Selfish Scriptural Interpretation”) take Biblical passages that either (a) simply sound nice, like the Psalms, or (b) contain something I feel I can apply to our situation with David, without stretching it too far. In “Shiphrah/Puah” I talk about the “I drew him out of the water” verse in Exodus, and since I read that I’ve looked for a lot of passages having to do with water, the most recent being Moses parting the Red Sea. I read Exodus a lot, to find other stories about Moses. I’ve read a number of essays by parents or educators of children with developmental disabilities, and those that imbue such kids (especially those with Down syndrome) with some near-mystical, spiritual quality are almost always painfully hokey. Perhaps they have just never had my gift for words J, because I think I’m starting to see David Moses that way, a little. As if he is my guide, and as long as I stick with him everything will be okay (see above re: this feeling). He has changed our family and has changed my life, so much for the better. All the fear and fatigue we went through those first six months are repaid a million times over every time he makes one of his goofy faces or tackles his older brother in the middle of a tickle-fight. If he gets leukemia as a child or dementia in his 40s (he’s at risk for both) then yes, that is going to suck. And the first time some kid calls him a “retard” I will likely end up incarcerated (simple or aggravated assault, depending on how big of a jerk they are), though I would hope just for a short time. But right this instant, YES, I am so glad he has Down syndrome.