Luke does indeed have tracheomalacia and additionally he appears to have some level of laryngomalacia. The tracheomalacia was diagnosed following a fluoroscopy on Thursday. Hopefully it is something that he will grow out of as he gets older and since the severe narrowing of his trachea doesn't seem to be impending his ability to eat and grow, its something I think we can put to the back of our minds for now.
Heart Surgery Update
Last week, we also received some second opinions on the timing and location for Luke's open heart surgery to repair his AV Canal. We haven't come to a decision yet on where or when we will do anything, but we have learned some new things to think about...
Boston initially suggested that we do surgery between 8-10 months, definitely before 12 months of age. Nationwide Children's in Columbus suggested 15 months and Cleveland Clinic is suggesting 18-24 months. Obviously there is a wide disparity amongst their thoughts. Some of the variables at play that are driving some of the different schools of thought include:
- Potential for pulmonary hypertension. Luke doesn't appear to be showing signs of this yet, however once it comes on it will negatively affect his lungs. We want to do surgery before this starts...
- Potential for neurodevelopmental delays. Since they will stop Luke's heart for the surgery and will place him on a lung heart bypass machine to breathe and pump his blood for him, there is a huge risk of oxygen not getting to his brain for a split or maybe even multiple seconds - hence the potential for brain damage and further delays. Since we know that Luke is already pre-disposed to delays because of him having Down syndrome, this is an even greater concern. There might be some benefit to him being older for the surgery as he may at that point be at a decreased risk for additional and substantial delays. I need to learn more about this....
- Technical skill of the surgeon completing the procedure... the AV Canal is apparently pretty straightforward to repair, but they will also have to work on his mitral valve and if they are off even just one millimeter with the repair, Luke could end up with either a narrow mitral valve (which apparently his anatomy might already predisposed to) or a leaky mitral valve. If he were to have a leaky valve, it could lead to a second and third follow up surgery to repair and could adversely affect his life expectancy.
- Follow up care... if we go to Boston, we need to be comfortable with the fact that if Luke were to need emergency surgical follow up care once home, it's unlikely that we would be able to get to Boston and we would have to make do with taking him to a center that doesn't know his history.
- Depending on the source you look at, Boston is #1, Columbus is #4 and Cleveland is #14. Other centers such as Philly and U of Michigan also rank high.
On a brighter note, here are some pics of the boys before we took off for Nationwide Children's on Thursday morning.
Matthew has always loved tractors, but what was once a love seems to be becoming a fascination for him! All he talks about are tractors and he loves to tell us that they go "brrmm brrmm". It used to be Dustin who waited for the Fastline to come in that mail, now it seems that Matthew is just as excited when it arrives!
Matthew continues to impress me with his love for baby Luke. He kisses him multiple times each day... we are blessed for them to have such an awesome connection! Luke continues to get better with his head, neck and trunk strength. He sat in his Bumbo seat for close to 30 minutes that morning!!