Arden Update: May Medical Appointments

This past weekend we made a trip out to the city, where we spent 3 nights in order to fit in multiple medical appointments for Arden. I will admit that now that we’ve done this a few times, the trip itself seemed a lot smoother. Practice definitely helps! We drove down on Thursday afternoon, and stayed in a hotel close to the hospital, which was great because the weather was nice and we were actually able to walk to a couple of the appointments. 

On Friday we attended trach clinic at the Stollery in the morning and then went to see Arden’s pediatrician in the afternoon. 

Trach Clinic

At trach clinic, we see many parts of Arden’s team all at once. We have done trach clinic over the phone before, but never in person. Given all the progress that Arden has made within the past couple months, we were excited to hear what they had to say. 

First we saw one of our pulmonologists (lung doctors) and a respiratory therapist from respiratory outreach. With them, we talked about Arden’s off vent trials, and discussed what his goals will be going forward. I think it surprised them that he was able to tolerate being off his vent. Last time they saw him before we left the hospital in December, he was only coming off his vent for 2-3 minutes at a time and it was very difficult and stressful for him. Going forward, we will be extending Arden’s off-vent trials to 10 minutes 3-4 times per day. We tried a few of these trials over the weekend and they went incredibly well. Arden’s lungs must be getting stronger! We know that even as we begin “vent weaning,” he will likely need his ventilator for a few more years. But this is certainly a big leap in the right direction! 

We will also be taking the cuff of Arden’s trach down for short trials throughout the day. That means that during those times, The space around Arden’s trach tube will not be sealed off like it usually is. He’ll have to work harder to manage his own secretions by coughing and trying to swallow. It’ll be hard for him, but we’re sure that after some practice he’ll do great! Having that seal gone also means that Arden will be able to pass air around his trach tube, over his vocal chords, and through his mouth. And that means…he’ll be able to make sounds! We’ve already gotten the chance to hear his cries and coos during a few of these trials. Let me tell you, hearing our sweet boy make sounds is not something I will ever take for granted! We took videos and it’s been an emotional milestone for our whole family. 

Pediatrician

During our visit to Arden’s pediatrician, we discussed his ptosis, our plans with orthopedic surgery and physio, and a few other things. 

Many children with Escobar Syndrome are born with ptosis. We will be referred to an ophthalmologist who will take a look, and potentially do a quick procedure to lift his eyelids so that they will not impede his vision anymore. Arden has learned to cope with this condition, and often in pictures you’ll see him lifting his head upward, because it helps him to see better. Although this means adding another surgery to Arden’s list, and that’s always scary for us, it’ll be great for him to be able to see clearly without having to compensate with his posture. 

I also gave our pediatrician an update about the plans going forward for Arden’s feet/ankles/knees, and we discussed his scoliosis and our contact with Arden’s orthopedic surgeon for scoliosis. 

Arden’s Playdate 

Arden’s appointments ended up being split in two for this trip, so two of them were on Friday, and two were on Monday. Although this meant spending more time in the city when we’d rather be home, it gave us the chance to catch our breath, slow down, and enjoy some new experiences with Arden. 

On Sunday, Arden’s former NICU roommate and PICU neighbor Asher traveled to the city with his family to pay us a visit. During our time in the hospital, the Telliers became our friends, and people we could count on to understand much of what we were going through. Now, Asher’s mama is a friend and a confidante to me. Being a medical mom, it’s so important to have people in your corner who truly understand what you’re going through. To have someone to talk to that has truly walked in our shoes is a blessing that I cherish. 

After the Telliers arrived, Brodi and Asher’s dad, Cory, were able to go for a quick 9-hole round of golf, while Asher, Steph, Arden, and I walked to one of the treed grassy areas near the University hospital and had a little picnic blanket playdate. It was absolutely wonderful to do something that felt so “normal.” Arden has never had a playdate with another baby before, so he was definitely leary at first. To be honest he was even a little scared of Asher! However, they quickly warmed up to one another and happily played next to each other. The dads joined us later on, and we enjoyed soaking up the sun and visiting throughout the afternoon. 

Orthopedic Surgery/ Clubfoot Clinic/ Physiotherapy

On Monday, Arden’s first appointment was at 8:00AM…much to his dismay. I like to joke that Arden is a teenager in a baby’s body, because he does NOT like to rise and shine early in the morning! 

Due to covid, only one parent is allowed into most appointments, and with Brodi’s physio background, I asked him to attend this appointment with Arden. During the appointment, they took Arden for X-Ray and confirmed that he has bilateral vertical talus*. From there, they decided that the course of action taken would be serial casting. They placed Arden’s first set of casts from his toes to his thighs. These casts will be changed every week for the next 6-8 weeks in an effort to move Arden’s ankles/feet into a more correct position. From there, he will have to undergo a procedure to put pins in to hold everything in place. After some time, the pins will be removed, and we will continue treatment from there. We are not sure if further treatment may involve the use of braces/orthotics/etc. Unfortunately for us, this treatment of serial casting has to be done in Edmonton, which will mean weekly trips down to the city for re-casting. 

Following this course of treatment, Arden will also need serial casting in an effort to gain more range of motion in his knees. Currently, Arden’s knees are not able to straighten, and as such, their position is not conducive to walking. Although Arden’s current casts for his ankles/feet go up past his knees, they are not stretching his knees. Stretching the ankles, feet, and knees all at the same time would be far too strenuous for our little boy. If serial casting for his knees is unsuccessful, he may also require a tendon lengthening procedure, but that will be determined at a later date. We are hopeful that some of the serial casting for his knees may be able to be completed closer to home so that we don’t have to travel quite so often. 

At the moment, Arden is still feeling a little uncomfortable from his new casts but he’s been a trooper so far!

Scoliosis

Following Arden’s appointment with orthopedics for his lower limbs, he went to diagnostic imaging in the hospital to receive a series of x-rays for his scoliosis. His other orthopedic surgeon wants to see him soon so that he can approximate the degree of his scoliosis in person, and decide if treatment is required at this time. X-ray can be very deceiving in measuring the degree of scoliosis in infants/children because it is often based on the positioning of the spine during the x-ray. It will be important for the orthopedic surgeon to see what Arden’s spine actually looks like in person. 

Going Forward

The next few months will be busy for our family. In addition to weekly appointments in the city for casting, we will also need to see Arden’s pediatrician and physiatry (physical medicine) at the Glenrose at the end of June. We’ve enjoyed a quiet winter and spring for the most part, and now it’s time to take some big steps forward. It’s a little daunting for all of us, but we know that we’ll make it through. Our little man has shown us strength in so many ways since his arrival into this world, and we know that he’ll continue to do so. 

XO, Rayel

*Vertical Talus: Irreducible dorsal dislocation of the navicular on the talus producing a rigid flatfoot deformity present at birth. See more about congenital vertical talus here.