We went to DuPont recently for one last post-op appointment with audiology; we were also scheduled to see a nurse practitioner to do one last once over of Isaiah's port and such.
He was pretty grumpy for a good portion of the car ride, but a 5am wake up would do that to most babies. I tried to make up for the lack of sleep with toys, but I think I overdid it a bit.
Once we arrived, we made a bonus stop in Day Medicine, where Isaiah gets his Pam treatments, and got his port flushed with Heparin (this keeps the port from clogging and gives it the ability to be accessed when needed for Pam). This needs to be done every 4 weeks, and will be done every other month at home, but there were a few issues getting this going at home so we took advantage of the timing of our other appointments and weaseled our way in at Day Med to take care of this flush.
After a quick job flushing Isaiah's port, Dr. Bober stopped in to see us. I emailed him with a concern one of the night nurses brought up and he was following up to help relieve any concern there might be.
Ok, so... those that know me know I can be very straight forward and blunt so I'm just going to say it; Isaiah has a big head.
Those that are used to seeing Isaiah don't notice it as much...or don't want to admit to noticing it because they are afraid to offend/hurt our feelings. I've mentioned it in front of others; I'd relate the responses to if I would have asked them if my outfit made my butt look big when it in fact it made me look like a whale.
It's ok. It's a part of Isaiah's life right now.
So, like I said, one of Isaiah's nurses has also taken notice to Isaiah's head size. Although it hasn't crazily increased, it's noticeably large. For the past few weeks, this particular nurse has been noting Isaiah's soft spot in the paper work, so I knew this was coming. Along with his head size, she also brought up that Isaiah's eyes tend to do something called "sun downing"; this is when you can see the whites of his eyes above his pupils. You can sort of see it in the photo below.
She is concerned he has pressure on his brain, possibly hydrocephalus, which is a build up of fluid that leads to brain swelling.
Ok, his head size has been a concern to Dave and I for some time (so are the veins in his head that are more visible at times). Hydrocephalus is something that can be seen in severe types of OI, but we don't see many symptoms of it in him. Yes, his head is large, but his soft spot is still soft and not like a rooster top (meaning pressure pushing his brain up), he's not vomiting like he should star in the next Exorcist remake, and he's not constantly irritable. Although his eyes do the sun-downing thing, they can also look up and stay up, and if he had hydrocephalus they'd likely not be able to stay up as the pressure would make that hurt.
Also, a larger head and sun-downing are common in OI. I knew this but still reached out to Dr. B. because I started to play the "what if she's right" game and I wasn't going to sleep.
Anyway, Dr. Bober took a look at Isaiah's head. His soft spot is still large and soft. His head size is in the 90th percentile but it's consistent with his growth, and after a conversation that we later had with a neurosurgeon's assistant, we learned that the shape/size is also because of the flatness in the back of his head (his brain had to go somewhere while he was laying flat on his back with that heavy c-pap tube attached to him; it chose the right side of Isaiah's head.) At the end of the appointment with Dr. B, we were back to feeling confident that Isaiah does not have hydrocephalus as he has basically no symptoms (besides a big ole noggin).
(Did you notice my mention of a neurosurgeon's assistant? Don't panic.)
After seeing Dr. B. we met with the audiologist that performed Isaiah's hearing test during his surgery. Did I ever tell you the results of that? According to the findings that day, Isaiah has perfectly normal hearing in his left ear and a mild hearing loss in his right ear. We counted it as a win. At this newest appointment, the audiologist re-administered the newborn screening and this time HE PASSED WITH FLYING COLORS. No mild hearing loss anymore. Our baby can hear perfectly. We knew it but it's nice to finally see that in his test results!
After his hearing test, we met with an ENT who looked in Isaiah's ears for his tubes. Although he needed a cleaning, everything looked great. We were all done with our scheduled appointments, but while we were in getting the hearing test, Dr. B. had emailed me letting me know he got the ball rolling for a helmet for Isaiah.
We then met with that neurologist's assistant who also measured Isaiah's head, took a look at the shape of it, and felt that a helmet would be beneficial. He started the process of getting a script for a helmet for Isaiah. We made one last stop after this (mind you, Isaiah slept about 5 minutes since waking for the day at 5:30am and it was now noon) to the orthotics area. There, they measured his head (3rd time of the day, people), took pictures, and gave us information on what to expect with the helmet (a plaster of paris mold will need to be made, we'll need to take frequent trips to DuPont for adjustments, and we'll need a boatload of patience because it takes time to reform the shape of the head).
We started the morning with 3 appointments and when all was said and done, we had gone to 7.
And we had one exhausted baby on our hands.
Although it was a long day, it was a great one. We learned Isaiah's hearing is better than first thought, we learned his head is a-ok, and we started the process of getting him a helmet.
So who actually made it through this post explaining our long day?