November ’21 Trip to Edmonton

This weekend we took a five day trip to Edmonton, and although the trip was planned primarily for Arden’s medical appointments, we tried to make it a relaxing and enjoyable time for our family. 

On Thursday night we drove down from Grande Prairie after Brodi had finished work, meaning we arrived in the city around 10PM. Arden had napped in the car and was therefore ready to party! He definitely stayed up late, and was feeling it a little bit on Friday morning when he had to get up for his first appointment at the Stollery Children’s Hospital. 

Unfortunately, Brodi and I became a little bit sick a week and a half ago, and had to be tested for covid-19. It was a scare for our whole family, as Brodi and I masked and sanitized like crazy in order to protect Arden. Lucky for us, our tests were negative, and after a few days, we breathed a sigh of relief! However, I have had a lingering sore throat and runny nose. I would not be able to pass the screening to go into the hospital, so Brodi and Arden had to go alone. This was the first time that I was not able to attend a procedure that required anesthesia with Arden, and I’ll admit that my momma-heart was a little bit crushed. I did however, use the time to nap back at our hotel and get on the mend. 

MRI, ECG & Echocardiogram

Arden’s first appointment on Friday morning was an MRI. During the exam, Arden needed to be super still, so they put him under general anesthetic. The trach Arden usually has in has a metal coil inside the silicone, so they ended up having to change his trach tube out for the MRI, and then put his regular type of trach back in afterwards. Brodi and I figured it was great timing because he was due for a new trach tube this week anyways. 

The MRI was a scan of Arden’s brain, spinal cord, and both knees. The first two areas to scan were ordered by the neuromuscular physician, and the third by the orthopedic surgeon that deals with Arden’s legs. 

The week before Arden was born, we discovered on MRI that he has something called a Mega Cisterna Magna. What that means is the fluid space behind the cerebellum in Arden’s brain was slightly larger than is typical. They have not discovered this anomaly to be the cause of any part of Arden’s genetic condition, and he does not have any cognitive limitations at all. However, they still want to monitor things like that as he grows.

When Arden was a newborn, it was also discovered that he has a “low-lying conus.” That means that his spinal cord goes down a little bit further than typical. It hasn’t caused any problems for Arden yet, but as he grows, there is the risk that the spinal cord could become tethered. That’s why it is important to monitor his lumbar spine as he grows. 

The primary reason for the MRI scan of the knees is to look at the vessels in the knee area in order to determine the next steps that can be taken by the orthopedic surgeon in order to make Arden’s knees more functional. Given that information, we may be looking at a fairly extensive knee surgery for Arden next year in order to help them straighten and gain more functional range of motion. 

Arden did incredibly well during and after the MRI procedure. We always worry because in the past when Arden has gone under general anesthetic, he often has had a hard time urinating afterwards. When this happens, they usually want to place a catheter. Every time Arden has had a catheter, he has developed a urinary tract infection. Luckily, this time Arden was filling his diaper shortly after his recovery from the anesthetic, and we had nothing to worry about! 

The neuromuscular physician called during our drive home on Tuesday evening to tell us the results of Arden’s MRI. The mega cisterna magna is no longer a concern, and the fluid space behind the cerebellum is now “normal” sized. Arden’s spinal cord is still sitting low, although it has stayed at about the same position since he was born. Typically the end of the spinal cord will sit around the L1-L2 vertebrae, but for Arden, his goes down to the L3-L4 area. The neuromuscular physician said she doesn’t know if this holds any cause for concern or not, so she has asked the neurosurgeon to take a look and get in touch with us. In the meantime, Arden’s pediatrician said he is not worried about these findings. We will know more about the MRI results of the knees when we next speak to the orthopedic surgeon that deals with Arden’s legs. 

On Friday Arden also had an ECG and echocardiogram scheduled for 2:30PM. Fortunately, they squeezed him in early, so Brodi and Arden didn’t have to spend any more time at the hospital than necessary. 

When Arden was a few weeks old, he was diagnosed with a heart condition called Ectopic Atrial Tachycardia. Essentially what that means is that he had an irregularly fast heart rhythm that would occur from time to time. For a long time, Arden had to be on various medications to prevent these episodes from happening. During an episode of E.A.T. Arden’s heart could beat anywhere from 175-230 beats per minute (BPM). Over the past year, Arden has outgrown this heart condition, and no longer requires medication for it. Friday’s ECG and echocardiogram were some of our last check-ins with cardiology. If both of those exams look normal, then Arden will be discharged from the cardiologist’s caseload, and we’ll have one less team to worry about! 

Weekend Outings

On Saturday, we decided to run a few errands as a family. We went out for lunch at Earl’s Restaurant, which Arden absolutely loved! He had a blast pointing all around the restaurant and watching all the action that was taking place. He was so amazed seeing all sorts of people and being in a new setting. After that we headed to Canadian Tire so that Brodi could check out some sales on tools, and Arden was delighted to pick out a new HotWheels car. He was so excited to carry his prize around the store in his stroller until we got to the till and paid for it. When we arrived back at the hotel, Arden had a nap with Brodi, and our night time caregiver, Agatha, and I went to the West Edmonton Mall to do a little shopping. Given it was Black Friday weekend, the mall was definitely chaotic, but we still enjoyed our time. I was finally able to visit my favorite store (Zara) after a few years of only ordering online, and boy was it lovely to see and choose the clothes in person again! The fitting rooms weren’t open which made things a little tricky, but I did a few “try-on” tricks (such as holding the waistband of jeans around your neck) to ensure the items I picked would fit. That evening we ate Sepps Pizza for dinner and enjoyed a relaxing night at the hotel. 

On Sunday, we met Brodi’s aunt and uncle Cindy and Darren for lunch, and had such a lovely visit! We hadn’t seen them in over 4 years (since our wedding in 2017!) and it was wonderful to catch up. Of course this was also their first time meeting Arden, so that was fun as well. Arden happily joined into our conversation and was delighted by another restaurant excursion. Later in the day we also took a drive hoping to see some Christmas lights, but the parliament grounds where we usually like to go weren’t lit up yet. We’ll definitely have to check out some lights closer to Christmas in our own area! 

Family Photoshoot

On Monday morning we had a studio photoshoot with Brandy Lee Photography, and it was wonderful to finally get someone else to take pictures of the three of us! Arden was a little tired and grouchy, so he wasn’t overly excited about the photo session. But as usual he stole the show and we still got quite a few cute shots! Monday afternoon was quiet. Arden napped hard after feeling quite tired, and we ordered in for supper. There are a lot of things we would love to do while in the city, but we are still trying to limit Arden’s exposure as much as possible. This weekend was very busy, and we didn’t want to bring him into any crowds of people. That said, it was an excuse for us just to relax and spend time as a family. We didn’t need much to occupy us, and it was great to ignore “the gottas” and just focus on our own wellness. 

Ophthalmology & Pediatrician

Our final day in the city on Tuesday held two of Arden’s medical appointments. First thing in the morning he visited ophthalmology at the Stollery in order to get a consultation about his ptosis. (Arden’s eyelids droop lower down than typical, and we want to make sure that he is able to see his world in its full potential!) During this appointment, the ophthalmologist decided that Arden will require surgery to correct his ptosis. The ophthalmologist said that he would like this procedure to take place as soon as possible, but that it will likely happen in January of 2022. He also discovered that Arden is “very” far-sighted, and will require glasses after surgery. This came as a shock to both Brodi and I! We are both near-sighted, so we never expected that Arden would have any troubles with being far-sighted. We can’t help but be a little sad that our sweet boy will need another device to help him out. However, we are already imagining how adorable Arden will be in his very first pair of glasses! 

On Tuesday afternoon, we visited Arden’s pediatrician for a checkup. Arden is now a whopping 23 lbs and 75 centimetres long! We will speak to our respirology team on Friday over the phone, but since Arden has been doing so well with his 20 minute off-vent trials, his pediatrician suggested that we push him to 30 minutes off the vent at a time. There weren’t many other changes that came from this doctor’s appointment, but we will get blood work done soon to see if Arden still requires the iron supplement that he’s been taking once per day. 

After 5 days, we are so happy to be home! On Friday we’ll have Arden’s trach clinic over the phone, and after that it will hopefully be smooth sailing until Christmas! Of course we will still have lots of phone calls and some house calls for various things, but otherwise we shouldn’t have to travel anywhere until after Christmas.

Happy Holidays, everyone!

XO, Rayel

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