Sunday, March 9, 2014

Finally Home and One Month Post-Surgery

As mentioned in the last post, we FINALLY got to take Mighty Max home on Wednesday!

Since then, we've primarily been nesting at home with our boy and today we celebrated that he is one month post-transplant!

We've also been adjusting to his routine with his feeding schedule, meds, and so forth which has resulted in some very tired parents. However, it's kind of nice because it makes us feel like regular parents of a new baby. We would also take sleepless nights of getting up every ten minutes over him still having to be in the hospital any day of the week.

Just because Max has been released from the hospital doesn't mean he's out of the woods by any means--he's just in the less scary woods. He still has to go back for clinic visits at least twice a week and the doctors have ordered us to basically lock our doors for three months because of his fragile immune system. Even now, we have to keep a very close eye on his diaper rash because it could get him readmitted to the hospital.

He's only on one of his two anti-rejection/immune suppressor medications right now due to his magnesium levels (which are finally going up for the first time without the aid of an IV--yay!) and they're constantly having to monitor the one he's taking. It's a fine line trying to balance that medication because if it's too low, you run the risk of infection and if it's too high, his body becomes too toxic.

Like this, but with medication.

The doctors have told us that ideally we should keep people out of our house but if people do come over, they absolutely need to wash and sanitize their hands and preferably wear a mask, even if Max isn't in the room because people bring in outside germs that could really wreak havoc on his compromised system. Even at clinic visits, Jon and I are the ones that hold him and the doctors and nurses are careful to wear gloves if they touch him.

"Okay, now bring the baby over here."

Our transplant coordinator, while she stressed all of these precautions to us, told us that she knows it'll be hard since everyone is excited about Max and his homecoming but what's important is protecting his immune system so he doesn't have to be readmitted to the hospital and that there will be lots of time for hugs and cuddles with people in a few months when his immune system isn't in such a danger zone.

Even with all the extra precautions and the fact that our bedroom has essentially been turned into a hospital room with all the machines and equipment we need so he can be constantly monitored, it feels SO GOOD to have him here! Jon and I are still washing and sanitizing our hands like we have OCD and doing tons of laundry to keep everything clean, but having Max with us makes it totally worth it--even if he did pull out his NG (nasal) tube four times during his first night home.

I mentioned before that we have lots of clinic visits at PCH. We had one on Friday to get his medication levels tested and when we arrived on the cardiology floor, all of the heart doctors were having their photograph taken in the lobby. Max's surgeon was among the group and he started waving excitedly at us. They paused the photo shoot so Jon and I could scoot by with Max for his appointment but then all the doctors wanted to get a glimpse of Max and see how good he looks now that he's out of the hospital. The doctors all started to joke that maybe we should get Max in the picture with the doctors because he looked great. We laughed and continued on to our appointment.

Apparently, that wasn't really a joke. Max's surgeon came back to find us after the doctor pictures were done and asked if we'd be interested in taking pictures since the photographer was already there. We agreed but we felt a little apprehensive because we hadn't exactly prepared to be on camera. I was wearing a sweater that adds about four inches of bulk to my frame and Jon was wearing a beat up sweatshirt and neither of us was looking particularly groomed at 8am.

"Sure . . . we can take some pictures . . ."

But I suppose no one will be looking at us and Max looked adorable as usual.

The surgeon then ran around the hospital trying to round up all of Max's doctors so we could get as many of them in the picture with us as possible. The cardiologist who'd been with us since I was pregnant was unfortunately at St. Joseph's and one of our two transplant coordinators was on maternity leave so we couldn't get them in the picture. Our transplant cardiologist had apparently snuck out the back door of his office to avoid being in more pictures but when the surgeon got him on the phone and said, "But it's for Max!" he came back down and joined the group.

I keep forgetting that Max is actually a pretty big deal. I mean, he's obviously a big deal to us and to all of the wonderful people that support and love him, but he's also the youngest heart transplant that PCH has ever seen and the fact that he's recovering so well and so quickly is pretty impressive.

The photographer is going to send us a CD with some of the pictures of our cleaned up and photo-ready doctors, an adorable Max, and his homeless parents. Photoshop can fix that, right?


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