Loves and kisses

Time for a Jaxson update.
The pediatrician search continues.
*sigh*
I was so excited to go to the one at Childrens Hospital Los Angeles, but when I got there, it was a dirty, overcrowded clinic. Yikes, I was immediately thinking this is not the clinic I want to be spending a lot of time at. Because its in the hospital, you see residents, and they report to an attending. The resident would be considered our pediatrician. I didn't like that at all. I know residents need to learn, and I'm ok with them coming in and doing their thing. But too many residents make decisions without consulting the attending, and I don't like that at all. We've had too many near tragedies because a resident said to do something, and the attending had not yet given the ok. Plus, the attending that did come in, I did not like at all.
I know I'm not going to get what I had in Utah, she set the bar way too high. But I do want someone that I can have a close relationship with.
Today I'm going to call UCLA's pediatric department. Its much cleaner, and not overcrowded. They also do medical home, which is what we had in Utah! I pray that UCLA will be the answer, we really need someone good!
We have tons of appointments coming up. We are going to be busy busy, trying to get this boy tuned up. Neuro is one I'm anxious to get to, and see if they agree that starting up the keto diet is a good idea. I want these seizures under control, before we get to a bad place again! GI I'm also anxious to see if they are going to fight me about fixing his nissen. I don't really want to feed him into his gut forever, and aspirating on stomach acid can happen again when it comes right up when he retches! The scariest one for me is ortho. That one is next week. His legs are terribly crooked, and I'm afraid that they are going to tell me his spine is just going to get worse. I just don't know what to expect from that appointment, except I do think a leg surgery will be in the future. A leg surgery also means casts on both legs for weeks. Not a fun thing at all! Cardio will be interesting. Because I hated my cardio in Utah so bad, in a way I fear that the cardio here will tell me a whole host of problems that were missed. That's just because I know he has a vsd, and I fear they are going to want to fix that. One thing at a time. Yesterday we did some bloodwork that endocrine wants, to check the function, or lack of, of his pituitary gland. Bloodwork is such a pain with this boy. I plan on fighting for a port for him. I just hope our new ped doesn't go against it. He has monthly labs, not to mention that he has no access if and when an emergency happens. In October, he blew through 3 IV's in 22 hours. It would have been more, but his horrible PICU nurse didn't check his IV all night, and it had infiltrated and proceeded to fill his entire arm with IV fluid! She's lucky it didn't cut off circulation to his arm!

For now, we just keep on keeping on with lots of loves and kisses. Because lets face it, that makes it all worthwhile!