It's been a doozy of a week since we've been home. While it's been wonderful to be home, it hasn't been relaxing!
The schedule we've been on to give Max his antibiotics every 8 hours has been pretty tiring. I would stay up until almost 12:30am to give him his final dose, then we were up again at 6:00 am for his first dose. Pair that with round the clock tube feedings (which he's still working up to his regular schedule), and I've been pretty stinking tired! Catching up with housework after being gone for almost 3 weeks was a chore too. Then, Monday, we had to take Max into the ED at Children's because there was a site on his incision that looked infected. This was one of Steve most exciting visits, as he got to "assist" the surgeon in checking the incision for infection by holding Max while they lanced the scar area. Ick - Ick - Ick! I don't handle blood on most occasions, but blood on my baby and I'm a bowl of jelly. Luckily it was not infected, and Max didn't feel a thing, thanks to the magical emla cream. And I didn't pass out, but I did get a glimpse of what was going on and I couldn't shake the wobbly feeling for a while. ICK!
This morning we had to go in for his follow up CT Scan. They wanted to get a good look at his abdomen to see if the infection and enlarged intestines had cleared. We were down to the hospital by 7:00am, and back home by about 9:30am after the quick scan. While home, we let him rest a bit, and ate our lunch before heading back down to Children's for our follow-up appointment with his pediatrician. A last minute scheduling conflict let us get in to see her rather than the nurse practitioner he was scheduled to see tomorrow.
I want to stop here and talk a bit about how amazing our pediatrician's office is. Max goes to the Special Care Clinic at The Children's Hospital in Aurora, CO. All of the doctors in the clinic specialize in treating kids with complex medical needs. When we came in this afternoon, we didn't expect much more than a simple follow-up after his hospitalization, but we got a reminder of why we drive 30-45 minutes each way to see all of his doctors at Children's.
When his doctor came in, she brought with her a psychology student who was shadowing her. She especially wanted to introduce her to Max and to us. She wanted the student to see how although Max doesn't talk, he's very smart, and knows everything that is going on. She wanted to show her first, that you can't underestimate the child because of what their outward abilities may look like. And, she wanted to show her how Max interacted through the appointment.
Then she talked to us about coming in the Spring to talk to medical students, residents, physician assistants, physical therapist, and others about Max. We'll work on our "talk" to them, but again, she wants these new students to see that Max and so many other kids like him have so much more going on than at first glance.
Then we got down to business. We were chatting a bit while Max's IV's were finishing up. She checked the radiology report from earlier in the day. He was given a good report, and everything looked cleared up. She checked on his incision, and the new area the surgeon reopened earlier this week. She asked how his seizures were (still no seizures...holy camoly we still can't believe it...through this all!) and how he was sleeping. All with a good report.
At that point, the doctor had the nutritionist come in and talk about his food, and she left to order his labs and to talk to Infectious Disease about their recommendation about the antibiotics and the PICC line. We chatted with the nutritionist about his feedings, and about the new formula recipe we're using. She had been working closely with the Metabolic Clinic while we were inpatient to change his formula around to work with protein restriction for his metabolic disease.
Once we got all of the nutrition part sorted out, a resource nurse came in to pull the labs from his PICC line, rather than needing to go to the outpatient lab, and have him get poked. While she was drawing the labs, his doctor came in and said that Infectious Disease were pleased, and we could discontinue the antibiotics, and the nurse could pull the PICC line when she was done drawing the labs. Waaahoo!
The rest of the appointment was a breeze. We got the PICC line out, and chatted a few more minutes with his doc, since HOPEFULLY we won't see her again until Spring! But, I left there with such an appreciation for Children's, and all of his doctors being there and working so well together through the Special Care Clinic. In those couple of hours in the clinic today, we got sorted out with radiology, got blood draws, and the picc line removed, talked to his nutritionist, who is talking with metabolics. If we were still with our old pediatrician's office, each one of those things would have been a separate event, and different clinics. I'm really thankful we've got such a great solid base to coordinate all of his care.
I'm also glad to be getting ready to go to bed, and not having to stay awake until 12:30am to finish IV medicines! He will continue eating by the pump for a while longer, as the CT Scan did show his intestines are still not completely back to normal size, and we don't want to overload them with too much food at one time.
Hopefully it won't be another week before I update. But, who knows! I am still catching up on everything, and it seems the more I check off my list, the more I find needs to be done. I'm just thankful we're home, he's feeling much better, and he got such a good report today.
Now this sleepy momma is going to bed!
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