Monday, May 26, 2014

Neurology Follow Up and the World's Cutest Alarm Clock

We only had to go the hospital once this week but it was kind of a long day. On Wednesday, we had a physical therapy appointment scheduled in the morning but when we arrived at the hospital, I realized that I'd forgotten to bring his most important anti-rejection/immune suppressor medication with us.

I'm lucky if I can remember who my husband is.

Luckily we live near the hospital so we quickly loaded back up in the car and drove home to get it while I called to reschedule our appointment. After getting to deal with the PCH phone tree, I was able to leave a message with the therapy desk and reschedule the appointment for that afternoon. We got Max his medication and headed back to the hospital for a blood draw (Max's favorite!) Luckily they only had to draw one small vial of blood to check his magnesium level as opposed to the four or five vials they need when testing his anti-rejection med levels, blood counts, and God only knows what else.

We were prepared to wait for the IV team but once again, they showed up in a matter of minutes after we arrived. Someone had clearly received a talking to about our routinely long wait times because this is the second time in a row when the IV team has shown up almost immediately. It actually took longer for the lab draw station to get the order from the heart center than it did for the IV team to show up. This, of course, seemed ridiculous because the draw station and the heart center are on the same floor. The orders need to be faxed in but it'd be so much faster to just walk over and pick them up.


The draw went well and we were able to head home for a couple hours before returning for Max's physical therapy appointment.

Physical therapy also went really well. Max's left shoulder is still good and none of the stiffness has returned. Now we're all focused on Max's head--he does really well with lifting it up when he's leaning his head back but he needs to work on lifting it forward. He'll get there and no one seems particularly concerned yet, especially because Max has a big head.

Our baby is a bobble head.

We found out this week that it's in the 75th percentile . . . which isn't really surprising considering that Jon and I both have big heads.

It's facts like this that make me glad I had a C-section.

Sorry for the visual.
Here's a puppy.

The big appointment for the day was the neurology appointment which was a follow up to the head ultrasounds Max received while he was in the hospital. He had a small cyst on his brain and initially, we heard about this not from the neurologists but instead from a random resident during rounds who, while presenting Max's case, mentioned casually that he had a cyst.

"He has a WHAT?!"

We've been really anxious about this appointment because with everything else Max has been through, we really needed for his brain to be okay.

As it turns out, we didn't need to worry. The neurologist said he looks fantastic and the kind of cyst he had was very small and was in his spinal fluid which the body apparently cycles out and replenishes. Max's first head ultrasound took place the day after he was born in order to get him approved for the transplant list and the cyst was present but small. He had two more ultrasounds after that, the last one on February 18th, and it had already shrunk down to only about 1-2mm in size. The neurologist we saw was so unconcerned with it that she didn't bother to order a head ultrasound during our appointment. When she examined Max, she said that neurologically he looked perfect and we'd just keep an eye on his development.

We might do a head ultrasound when Max goes in for his six month biopsy and heart catheter in August but otherwise, the doctor thinks Max is fine. She said that these kinds of cysts are super common and often just go away on their own. As with Max's baby anemia, the cysts are not unusual but they're not often noticed because most babies don't need a head ultrasound right after they're born for transplant list approval.

Some of this "normal" shit starts out being as scary as entering symptoms into WebMD.
"Let's see . . . runny nose, coughing . . . yep, it's cancer."

Everything looks great on Max at the moment which means that we don't have ANY appointments this week! I mean, I still have to go to the hospital pharmacy to pick up prescription refills but still. It's kind of a big deal that we don't have any appointments because this is the first week since Max was discharged from the hospital that he hasn't had to see any doctors.

"But, Emily," you might say, "if you haven't had to go to the hospital then why are you updating the blog almost a week later?"

I'm so freaking tired I feel like my eyes are bleeding.

Max and I had some issues with establishing breastfeeding and for a while, I thought that it was never going to happen. If I wanted him to have breast milk, I was going to have to pump and give it to him through a bottle. However, almost two weeks ago Max all of a sudden decided that he was super on board with nursing and that was what he wanted to do. Which was amazing!

Until I realized I couldn't pawn any of the middle of the night feedings off on Jon.

But it's a sacrifice I'm willing to make. I'm exhausted and can't see straight (the fact that I'm using a computer is incredible) but I know that these middle of the night feedings are temporary. I don't know how long they'll last but I'm assuming they'll stop before he goes to college.

In the meantime . . .

Even when I'm feeling too exhausted to move, I just look at this face and it makes me forget that I'm running on 20 minutes of sleep in the last 48 hours:


  1. I shared this post with one of my co-workers. She has a question, " How many times did you have to stop and check on Max while you were writing."

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