The whirlwind continues!

Our whirlwind of doctors appointments continues!
You know we finally found a good pediatrician. As a matter of fact, we've been emailing back and forth because he wants me to stop by next time I'm there to get him set up with the medical home program.
Last week we had ortho. The good news is no surgery for now. He wants to wait until the last possible minute to do surgery because basically, Jaxson scares the hell out of him. The bad news is it will be needed, and he is wanting to see him every six months to carefully track the progression of not only his legs, but his spine. When he looked at him, he had red marks on his spine from pressure in his seat. Yesterday I say what looks like the beginning of a pressure sore. Yikes, that really freaks me out. I can't even begin to imagine how they would want to fix his spine! If it can even be done!

Yesterday was GI. I loved her too, but I knew I would because she was recommended by a friend. She asked me why I wanted to get him back on stomach instead of intestine feeding. My only real reason is because continuous feeds are not the most convenient thing to do! He'll never eat by mouth, so it really doesn't matter if he never uses his stomach and it shrinks. Again, she doesn't want to do surgery on him. I'm not sure why he scares people so much. With the trach, surgeries are a breeze! She wants to keep him on J feeds, and we are going to increase the hourly rate as much as we can so he can have more time off. Our only worry is J feeds isn't going to help aspirating on stomach acid, which is what he did in September. She switched him from zantac to prevacid, because its much stronger, and we wait until our pulmo appointment and get her opinion on fixing the nissen. I really do hate waiting, because with our luck he'll have a huge aspiration episode and end up in PICU!
I also asked her about what will happen when his GJ needs to be changed. I told her about our horrible experience in October at CHOC, where they put the wrong tube in and made a huge ordeal of sedating him. She wants him sedated and her to do the first change, because she's going to do some scopes and look at his esophagus and stomach. But after that interventional radiology should be able to do it.

Next week continues with cardiology and neurology. Fun stuff!
Everyone have a great weekend!

The boys snuck one of Arina's clips in Jax hair when he was sleeping!