Morning Update & Orthopedic Consult

No real changes overnight. The Ped Surgery team came in this morning and worked a little with Elias' G-tube. He has a leak around the site, which is fairly normal in the beginning, so there has not been too much concern. They are just attempting to adjust it to ensure it heals properly in place. They also removed the IV from the left side of his head and replaced it on the right side. Elias is very difficult to find veins for IV access, so they usually have to go in his head. By doing this they have been able to reposition him to his left side and he seems much more comfortable.

Rewinding Just A Bit

With all that was going on last week we did not really get into what happened with Elias' ortho consult. They finally came in on Thursday morning of all mornings. It was the hand surgeon and his resident team. He obviously had no idea what he was walking into with Elias doing so poorly. His nurse did not want to ask them to leave because she knew we had been waiting for so long for them to finally come. She told him that he could be brief in looking at him, but that now was not an appropriate time. He was actually starting to teach his residents. Elias' nurse spoke up and asked him not to teach, to please evaluate him quickly so they could finish working on him. He was unstable and it was very evident. It was certainly a time that this doctor should have used a little discretion about proceeding. The ortho team found us in the family waiting room. They introduced themselves, and without thinking I blurted out, " You guys sure picked a hell of a day to show up!" I'm not really sure if my inflection came off as being distracted, upset, or just a complete smart-ass. However, I was assured by several of the nurses that all three would certainly have been appropriate. They explained to us that Elias is missing his radial bone in both his arms. OK, we knew that much, but we humored them. He continued to explain that it was really too early to consider surgical options at this time. We told him that we understood that, but the purpose of the consult was per occupational therapy's request for validation on how and what to splint, as to not hinder potential success when it is time for surgery. He relayed to us that he is not a fan of splinting and that nothing OT would do was going to help or hinder the process. OK, great thank you for your time, you obviously did not understand the reason you were called out to see him. After discussion and follow-up with OT (with their complete dismay by the response) and the NICU doctors, the ortho report was very vague. So they are initiating a dialogue to possibly coerce a slightly more lucid response. Sometimes, doctor to doctor conversations can yield better results than doctor to patient. To be completely honest, this has us very glad that Elias will not need any surgery for this right away. We are having serious doubts about wanting to use these orthopedic doctors, based on the visit and lack of response. Thankfully they are part of another hospital and not the one we are currently staying. At the very least we will want to seek another opinion, which will probably involve some traveling. Elias getting the best care is what is important to us and that is the bottom line. As for splinting, we are going to continue once Elias is stable again. We, along with OT, feel as though they have been beneficial, if for no other reason than increased range of motion.