Our first stop this morning was with the amazing Dr. Campbell, the Director for the Center of Thoracic Insufficiency Syndrome (TIS). He's known for inventing the VEPTR device that has dramatically changed the lives of many, many kids and their families.
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| Will playing peekaboo with Dr. Campbell |
We did the standard meet and greet with Dr. Campbell and he said Will was doing very well. He was happy to see that Will's chest wall had slight expansion when he breathes, which is a good thing. There was some rigidity there, but even seeing slight expansion is encouraging. Think about when you breathe... take a deep breath....you should be able to see lots of expansion in your chest when you take a deep breath. With Will, his chest wall is kind of rigid and he can't really get a lot of expansion. That's a concern but thankfully he does have some expansion there. His chest is still measuring small, less than the third percentile, BUT I'll worry about that later. Dr. Campbell also took a quick peek at some x-rays they did this morning and he doesn't think Will has any spinal cord compression that is typical with about 60% of Jeune patients. This is great news in that Will won't need surgery for this.
After meeting with Dr. Campbell, we had a quick meeting with anesthesia to discuss what they will be doing on Thursday when Will has his MRI and CT Scan. He will be under general anesthesia for this and it makes us quite nervous. They think he will handle it well and he'll be fully monitored during the whole process to make sure he doesn't begin having any respiratory complications. Please say a prayer / send happy thoughts that Will comes through anesthesia like a champ.
We also met with a general surgeon, Dr. Nance, that helps Dr. Campbell with VEPTR surgeries. He said it looked like Will would be a good candidate for surgery if it's needed. He was pleased with his weight (almost 18 pounds) and said Will should do quite well. Obviously, the VEPTR surgery would be incredibly difficult for any child to go through and he cautioned us about the risks for infection, etc.
So all-in-all, we didn't learn a whole heck of a lot on day one. Thanks to my other Jeune moms I kind of knew what we were going to hear today, and we had done so much research coming into it that there just weren't any surprises. We still have many other tests and appointments this week and we're hoping to have some initial feelings on whether the doctors think Will needs the surgery by the end of the week. The full team of doctors that work on the cases won't be meeting for another couple of weeks, though, so we won't have an official recommendation from them until early February likely. Soooo, we wait and we try to stay healthy in the meantime.
One of the highlights of the day was getting to meet these two amazing moms in disguise. :) I was so, so happy to finally get to meet them in person after talking and messaging back and forth over the last few months. They are such an inspiration to me and are such a blessing in our lives. Please continue praying for their kiddos, too. All three of our babies were born with Jeune Syndrome just a few weeks apart.
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| Mandy (Madden's Mom), Audra (Aubree's Mom), Mary and Will |
Thank you so much for your continued well wishes and prayers. We don't have any appointments tomorrow, but we have our big pulmonary function test on Wednesday morning. We'll check back in with updates after that. Good night from Philly!
I am glad to hear it has gone so well so far. These doctor visits can be such a rollercoaster ride. You and Will will share that special connection with these families all your lives for sure. What an unexpected gift in life.
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