Friday, January 9, 2015

11 Months, Chatty Cathy, and Health Updates

This is waaaaaay overdue and we have a lot of updates so hang tight--we're just going to dive right in! Let's start with the fun stuff.

We got to celebrate Max's first Christmas with him at home! The poor guy was sick (more on that later) but he still seemed to enjoy opening presents. Of course, being only 10 months old at the time, I'm pretty sure he didn't understand why we put up a tree with lights in the living room or why we suddenly had a new stack of toys, but the whole holiday was still pretty amazing. At one point, Jon and I weren't sure we'd ever get to celebrate a first Christmas with Max, let alone one at home in Flagstaff (although we almost had to be in the hospital--more on that in a minute). Max made out like a bandit and has been having a great time playing with his new toys. One of his favorites, a drum, gets double duty with the drumsticks; Jon and I are huge nerds and have waved the drumsticks around and said, "Wingardium Leviosa!" which Max thinks is hilarious.

We're so excited to teach him all about Harry Potter.

Physical Therapy Improvements
As regular readers of this blog know, Max is behind in his gross motor skills due to his transplant (although he's either on par or ahead with fine motor and mental development milestones). We realized that now, part of Max's problem isn't that he can't do things like sit up on his own or get up on his hands and knees--he's kind of lazy and just didn't want to. However, with his new drum from Christmas, he has more motivation to sit up and he's starting to do it for longer and longer stretches of time. The last time we took him to physical therapy, he also stopped screaming (he hates PT) long enough to do about 15 minutes of actual therapy.

Pictured: Max's physical therapist.

Chatty Cathy
The biggest development we've had is that at 10 months old, Max started talking! His first word was "bop" which is our word for pacifier. The first time he said it, he was holding his bop and staring at it very intently. Jon and I were floored! A couple days later, he said "poop" much to the amusement of his dad. As of right now, here is a running list of all the words Max has said:

  • bop
  • poop
  • again
  • more
  • eat
  • uh-uh
  • bot (for bottle)
  • no (shouted only once at a nurse who had to swab his nose--it was both sad and hilarious)
  • Da-ee/Dag/Gad (for Dad--all said while looking directly at Jon)
  • "It good" (first baby sentence!)
  • Mama (my personal favorite)
He's trying to say more and more words every day so I'm sure this list is only going to get longer. We're so excited that he's starting to communicate verbally!

11 Months
Max is now officially 11 months old and 11 months post-transplant!

Now the not so good updates:

A couple days before Christmas, Max came down with his first serious cold. He's been somewhat sick since October but this one was really bad. He got really high fevers (up to 102) and it was difficult for him to keep food down because the excess phlegm in his throat was making his gag reflex really sensitive. We had to give him his bottles very carefully and only let him take a couple swallows at a time time keep him from throwing up. This basically equates to spending every waking moment feeding him. However, we managed to get him to take in a high enough volume of food and he kept gaining weight and kept his medications down so we could avoid having to put an NG tube back in. Last week he seemed much better for about five days and then all of a sudden, a few days ago he just tanked again (high fevers, sensitive stomach, and behaving like he just doesn't feel well). We took him back to the pediatrician and she thought he might have developed something . . .

. . . like a sinus infection. After consulting with our transplant coordinator, we've started him on an antibiotic. We saw a noticeable improvement within just a couple doses but the amoxicillin seems to be making his stomach sensitive again. He's still getting the occasional fever but to us, he seems to be making very slow progress in the right direction.

It's all about the baby steps.
The Spot in His Mouth
The positive side is that it looks like it's slowly getting better. The downside is that since his doctors don't really know what it is, they want to go back in and biopsy it. We're refusing to do that until Max's Ear, Nose, and Throat (ENT) doctor looks at it again since no one from PCH has seen it in a month. We also might get a second opinion before we consent to a biopsy because it looks to us like it's healing, albeit very slowly. In normal people with functioning immune systems, a spot like this can take 15 weeks to heal. In a baby with a suppressed immune system, you can assume it's about double that (but of course there's no data on transplant babies with this because Max always has to be Patient Zero). We're not doctors but we're also not sure another biopsy is necessary and we want someone to at least look at it again since it's changed so much since a doctor looked at it.

Additionally, the concern is that the spot is an indicator of something else going on in his body that we just can't see. His transplant teams wants to do PET scan which we agree needs to happen. This is another source of anxiety though because I really want to do the scan but I'm kind of afraid of the possible results. As with anything involving Max, the spot could either be totally benign and just an angry canker sore or it could be an indicator of something much more serious. I'm trying not to dwell on that until we actually know something concrete but I can't help but worry--it's what I do.

My life in a nutshell.

When Max was in the hospital for his mouth biopsy at the beginning of November, we took him in to do a one bang MRI. He didn't have to be sedated and it was really quick. I even got to be in the room with him to help comfort him while it was happening. When we got the results back, we were told Max had a narrow channel in his brain for fluid. We were told that it could be nothing and he'll just grow out of it but then someone else mentioned (in passing, of course, because that's the best way to hear scary news) that it could be an indicator of something more serious. We felt comforted by the fact that neurology didn't feel the need to follow up with us while Max was still in the hospital but we were supposed to see them after his was discharged.

Trying to get an appointment with neurology, however, is nearly impossible. I left message after message and couldn't get through. When I finally did, they told me that they'd never heard of Max's neurologist (she's not a new doctor). Then when I finally talked to someone who knew who the neurologist was, she was out of the country. I tried calling when she returned and couldn't get through. Finally, I asked someone in cardio to help us and boom, just like that Max had an appointment.


We saw the neurologist on Monday who gave us . . . interesting news. Basically, Max has some extra fluid in his brain. When babies are born, they have a lot of extra fluid in their heads but as they get older, their brains typically close some of the open areas and fill in the area with gray matter. Max's brain, however, has not done this and he still has the pockets of fluid which could be caused by a variety of sources. For example, he was born with a janky, half of a heart that didn't pump his blood very well and it was replaced with a slightly older, stronger heart that pumps his blood very well. He's always had high blood pressure which is something we're now really trying to manage. Additionally, as I mentioned earlier, one of the canals in his brain is kind of narrow.

The good news is that Max still has fluid around his brain between his brain and his skull so it hasn't progressed to something called hydrocephalus. He also has the added bonus of the soft spots on his skull which act like pressure valves to relieve some of the extra pressure on his brain. As of right now, none of this seems to be causing him any problems per se. The neurologist told us that he's surpassing all of the mental and fine motor skill milestones so he's ahead at the moment.

Einstein ain't got nothin' on Max.

The narrowed fluid canal in his brain could either be an indicator of  a problem later or it could be nothing and he'll grow out of it. For now, we have to monitor him though because the extra pressures in his brain could cause issues so we have to keep an eye on him for changes in mental abilities, speaking, fine motor, and a severe increase in lethargy. If we see any of these red flags, we'll have to have a neurosurgeon put a shunt in that narrowed canal to allow for some relief of that extra pressure.

The joys of transplant and its ripple effect--it could either be nothing or it could be a huge surgery. The neurologist wants Max to come back in for an MRI in the next couple weeks to check the fluid levels in his brain to compare it with the one bang MRI he got when he was in the hospital in November. And then . . . I guess we'll just go from there. More than likely, it'll just get added to the list of things we're monitoring.

Makin' a list,
checkin' it twice . . .

So that's where we are! Those are all the major updates on Max from the last several weeks. We have a clinic appointment next week and we should have more updates soon on his sinus infection, the spot in his mouth, and the fluid in his brain. Until then . . . we're going to go play drums and Harry Potter with Max.

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