Happy and Healing!

We have been home for over a week now and Ayden is really pretty happy. He sleeps until 10 AM if we let him, but maybe that is the normal 12 yr old on winter break in him. 😁 He still needs the occasional nap on days that he is more active, but I think regaining strength will take time.

We went to his previously scheduled "well child" appt. on the 30th. It was a good follow up and while we don't have all the answers yet, we have a few indicators. His immune panel revealed no residual effects from his vaccines. Basically, his body looks like a nonvaccinated child. So he got a few shots and we will redo the panel in 6 weeks to see how his body responds. None of this is really surprising, afterall our whole special needs journey started with HSV encephalitis at 7 mos. We were reassured that the HSV would not flare again by so many doctors, and then...it did, at age 2. The crazy thing about all of this is Ayden is always asymptomatic until whatever it is gets so severe that it needs immediate action. As a mom it puts me back on high alert, something I have tried to move past for years now. I knew when we left the ER that Friday morning they were wrong, and they were. I have to go back to trusting my gut and be "that mom". 🙄 Our pediatrician reminded me I have his cell, and need to call him. I reminded him he was supposed to be on medical leave at the time. Thankfully, it was his management that Saturday night that got things rolling in the right direction. I would feel better if I knew for sure the antibiotics he is on will work and it won't come back. We don't know the cause of the pnemonia so that doesn't help either. I know it is common not to know, but I am hoping the new chest x-ray next Thursday and follow-up with the surgeon on Friday will show the improvements that put my mind at ease. I plan to get back to work, but Ayden will not go back to school until next Wednesday. His IV antibiotics will finish Tuesday AM and the Home Health will remove the PICC line and discharge him from their care that day. Grandma will be in charge for a few days with Daddy popping in if he can. Unfortunately, this is not over as there are still questions, but clinically my ornery little booger is back, with a smile of course. In fact, to add stress I had to email our neurosurgeon this AM because the doctor and his dad both noted his shunt tubing protruding. It is, but fortunately the Neuro team is not concerned.

They said the weight loss from the hospital and growth spurt probably just have us noting it more than before, but they said they loved his smile in the pictures. 😁 We do too! Thank you again for the prayers, follow messages and texts. We are almost back to our normal. 😉