Dear Dr. Kirshbom,
(This letter has been a long time coming, but if you have or have had small kids, you know how things can just slip away …)
You performed an AV Canal repair on our son, David Moses, on 8/12/2010. At the time of his surgery David was 4 ½ months old, and had already endured a 92-day NICU stay – he was born at 32 weeks’ gestation, weighing 2 lbs, 13 oz. David has Down syndrome and faced multiple other health challenges before his surgery.
We just wanted to let you know that David is doing fabulously. He is now 22 months old, and weighs about 23 lbs. He is not standing or walking independently yet, but will pull up to stand on anything that will hold still, and he is cruising along the couch proficiently. Medically, we are thankfully at a point where most issues are just regular-kid stuff – stomach viruses, pinkeye, etc. David received the Synagis/RSV shots last winter, and again this year. Medication-wise, he has Prilosec 2 x day, Xopenex and Pulmocort 2 x day in his nebulizer, Levothyroxine 1 x day, and a multivitamin – that’s it! A couple of months ago his nutritionist finally gave her blessing to take him off of formula, so now he does whole milk. He still eats some Stage 2 and 3 baby foods, but he mostly eats table food and is working on feeding himself with a spoon.
As with many life events, and especially many David events, the heart surgery process did not unfold much the way we expected. The first month or so afterward was incredibly stressful for us. David had a new, complicated medication schedule, and we ended up in the ER the day after we came home from Atlanta, because he had been screaming inconsolably for hours. This turned out to be the result of a horrendous case of gas – we’d had to start thickening his formula after the surgery, and the Simply Thick stuff they gave us had built up gas in his intestines until he was miserable. Once we abandoned the Simply Thick, figuring out the right proportions of formula and rice cereal was a huge challenge. We also had frequent cardiology checkups, and we followed up with your recommendations to see a pulmonologist and GI specialist. All these doctors are in Asheville, over an hour away. The first few echoes showed some remaining valve leakage, an ASD and a VSD. After a few months the septal defects had corrected, and the remaining leakage is mild-moderate, not requiring intervention. But initially, it looked as though the operation had not gone as smoothly as you’d indicated. I cried through most of our first pulmonology visit – everyone was telling us different things, there was so much information to try to sort through, and all in all we were frustrated, confused, and still scared, which we thought maybe we wouldn’t be anymore after the surgery was over.
That was the most difficult aspect, the huge psychological letdown we felt right after the surgery. It’s not that we believed everything would be fine after that (he was still so small, and obviously the Down syndrome thing is pretty permanent). But for us, the surgery was a huge event – we’d thought about it every day since we found out about the defect while I was still pregnant, we counted down the time, and when David appeared to have done well, we were ready to celebrate. But all the medical providers were ready to move on to the next problems on the list – there was no acknowledgement of hey, he lived. This tiny baby has lived through this awful surgery and whoo-hoo, how amazing.
But/and: David’s pulmonary pressures have decreased steadily since his surgery. Last July, his cardiologist (Aaron Pulver in Asheville, we really like him) stepped him down from continuous oxygen to nighttime-only. That was a great step for us, since David was just beginning to get really proficient at crawling, and having to drag around even the travel-size tank was slowing him down. At his last cardiology checkup (Jan 2012), Dr. Pulver seemed to be hinting that if his next echo in July looks as good or better, he might discontinue the O2 altogether. We know the echo doesn’t give an exact pulmonary pressure measurement, but Dr. Pulver said there’s no reason to suspect they are abnormally elevated, because there is no thickening of the heart muscle or any other secondary sign. We know there could be a catheterization in his future, but there’s no reason for one now.
We don’t know what exactly the future holds for Mr. David, but then again we don’t know what’ll happen for our other “typically-developing,” son, either. I think we are in as good a situation right now as we could be – we have a medical team we like and trust, Early Intervention services have been reliable, and we still have a lot of support from our friends, family, and church family. We have become involved with the local Down Syndrome Association, and have made individual connections with a couple of families who live close by. Most importantly, though, David is doing so well medically and developmentally – it’s such a relief to be able to say confidently, “he’s fine.” We have finally begun to believe that we have a good grasp of his situation, we are the ones who make the final decisions, and we are his best advocates.
Enclosed is a picture of David at Thanksgiving 2011, when he was about 18 months old. As you can see, he has a delightful smile and a head full of crazy-curly hair. He’s gorgeous and wonderful and funny and all-around awesome; I can’t imagine our family life without him. Thanks for fixing his heart. You said you would, you said you did, for awhile we doubted it but it is in fact fixed. Also attached are a couple of entries from David’s CaringBridge website, which has also been an important source of support for us. Feel free to read at your leisure, as I’m sure the life of a pediatric cardiac surgeon is pretty busy. But these are entries from right before, and awhile after, his surgery, and I think they do a decent job of describing what we were feeling at the time.
Thanks so much, for fixing his heart.
Sincerely,
Joanna, Matt, Simon, and David
No comments:
Post a Comment