Chest Wall Reconstruction for Pectus Carinatum

About 1.5 years ago, as a result of ricketts (brittle bone disease), Kyle was diagnosed with Pectus Carinatum (pigeon breast). Although the surface appearance is more mild, the ribs are sinking far in to his lung cavity. The risk, depending on the severity (to be determined), is great since it inhibits lung capacity. Kyle still has BPD (chronic lung disease), a condition resulting from prematurity and using high pressure vents on immature lung tissue. Because of this, his lungs are still under-developed for his age. In time they will heal, but not for a few more years at least. The added condition can inhibit this process.

As time has gone on, the chest wall malformation seems to be worsening (not self-correcting). Last week Kyle was referred to the Chief Surgeon with Children’s Hospital in Chicago, who also specializes in Cardiothoracic Surgery and Chest Wall reconstruction. Our appointment is toward the end of June. If you know of anyone that has been through this, please let us know . We’d like to know what questions to ask, and what to expect should surgery be required anytime in the near future.

Thank you,
katra

First Steps

That’s right… Kyle took his first steps today towards walking independently. He’s been cruising for 1.5 years now, and using his walker consistently for 6mo. For the past 5-6 months or so, he’s been practicing standing, and is still a little shaky – but standing. I guess he decided that he was ready to start trying to walk on his own, too. Fortunately for us, Karl was right here when it happened, so we both got to see it. Of course we cried, and cheered and gave him big kisses and high fives – I mean how could we not? It’s one of the biggest accomplishments of his life. About an hour later, he worked up the courage to take another step. So we’ll just start building on that, one step at a time.

This picture below taken a couple weeks ago. He’s clapping because he’s so proud of himself :) On the picture book below, you’ll see a boy standing in the upper left corner. We’ve found a great collection of picture books with kids doing all sorts of activities, and his desire to imitate them, has helped us better teach Kyle how to do certain things. They also help in communicating, a trick we learned from his preschool. Where he can’t say the word, he’ll point to the object or picture to allow that to speak for him. However, his speech has come a long way. He knows and identifies his entire alphabet, counts to 20, counts down from 10, identifies multiple animals – the list goes on. School has made a major impact on his education. Being around other children his age, in a learning environment, is helping Kyle overcome so many obstacles. Did I mention that he even finger paints now? He was so threatened by anything that had an odor or made him think of food. Now he plays with real food, uses spoons to take food off of my plate and pretend eat or feed us directly. It’s just incredible how well he’s doing.

In other news… Kyle had his tonsils and adenoids removed, as well as having his 3rd set of ear tubes placed – YESTERDAY. We had to stay in the hospital last night for observation, but were released and home before noon. Yesterday was pretty rough, and he was on oxygen for about 12 hours. After that, the pain meds seemed to be working better. This morning he woke up at 5am, all smiles. The tonsils were causing an obstruction, and creating difficulty in swallowing and breathing. Because of the inability to swallow, he had turned in to a water faucet with all the drool. There’s already been a big change in that area, with minimal drool today.

We’re also fearing an upcoming drs appointment with Kyle. Over the years, due to nutrition shortfalls early on, Kyle has developed Pigeon Breast (pectus carinatum). With clothes on, it’s not so obvious, but with his shirt off, you can see that his chest plate protrudes more outward, and unlike most PC cases, Kyle’s ribs push deep in to his lung cavity – almost caving under. It’s that particular problem that’s creating a serious issue in Kyle’s health as he grows. The problem has already been growing, but during his last growth spurt, Kyle’s ribs did not extend downward like they should. Instead, they curled up further in to his lungs. As time continues on, this begins seriously limiting his lung capacity and growth. Since he already has BPD, he’s at greater risk. His future will likely include a minimum of one major surgery, with additional surgeries not being ruled out. We meet with the Cardio Thoracic dr in June, and the Orthopedic surgeon next month.

Update on Ian…
The baby hasn’t been doing so good. Serious tummy troubles – and I feel like I’m to blame. I had a botched root canal last friday (being finished this coming friday), and had to go on two meds that are not compatible with breastfeeding. I only had a few days of milk in the freezer, so I had to give him formula. We noticed a big change right away. Projectile to general spit up, extreme fussiness, decrease in bowel movements, and a rock hard tummy. Signs we’re all too familiar with from what we went through with Kyle. I had to call the dr to see if I could discontinue the medicine. Since it was in my system for 48 hours, I could – but then I had to still wait 24 hours to breastfeed again. So this afternoon was the first time Ian has breastfed in nearly a week. He was so happy – but he’s still having a hard time. Today, he’s only had one nap, and just laid down for bed. I’m really hoping that the breastmilk will get his bowels moving again, and release some of the pressure and discomfort. Formula truly is horrible stuff.

On the upside… Ian has been playing under his playmat like a little pro. He whacks everything, grabs toys, and has begun bringing them to his mouth. It’s so cute. He puts his little hand in the air, steadies it, then goes crazy smashing things as quickly as he can. He also loves talking to you – agoo, ahh, and then little laughs and smiles. He’s also figured out how to click his tongue and has begun blowing bubbles. Ian also stares and smiles at Kyle, and of course Kyle just LOVES him! Here’s a picture taken a week ago: