Our February Trip to Visit Arden’s Pediatrician

Arden’s trips to the city for any kind of doctor or specialist appointments are always a big undertaking. This time, we were in Edmonton for less than 24 hours. However, no matter the duration of the trip, we still need to pack the same amount of equipment and supplies. I have now developed a “travel list” for Arden, so that each time we go anywhere, I can look over the list and check off all of our items so that I know I have not missed anything. I also have duplicates of almost all of his supplies organized and ready to go so that we don’t have to repack everything for every trip that we take. [I will likely do another post on everything that we pack and our organization process for those who are interested in seeing how we do things. I know that as a new trach/vent/tubie mom, I would have loved to have a step by step guide on how to make things as easy as possible.]

On the Road

We have quickly realized that my vehicle is definitely not large enough to carry all of our supplies and equipment, while still having enough room to be functional on the road. Luckily, for this trip and our January trip, my amazing sister in law lent us her vehicle. It is much larger and makes everything a lot easier for us. We will have to look into purchasing a van or something else, but right now we’re not in a position to make any big purchases.  

When we are on the road, Arden needs to have constant care and attention, so I need to ride in the back seat with him. During this time, I am doing regular suctions, setting up and giving feeds and meds, and doing diaper changes on my lap when we stop. Brodi drives, and I swear it must be so hard for him to maintain his focus while all of these things are happening in the back seat. Arden isn’t a fan of his carseat. He can be feeling great on our day of travel, but as soon as he is confined in his carseat he becomes one unhappy camper. He usually settles out once we start moving, but those moments when he is upset can be tense. When Arden is upset or frustrated in his carseat, he often holds his breath. When he holds his breath, his oxygen saturation drops into unstable territory, and it can be stressful because there is really no way to bring his sats back up until I convince him to stop holding his breath. Usually his sats are never low enough to be dangerous during this time, but it’s certainly enough to give his mama a few heart palpitations. In all honesty, I do find it difficult to control my stress during these times. When I’m in the back of the car, alone with Arden, and he’s desating, I find that moments feel like many minutes, and I always feel a lack of control. Whereas at home I have all of his supplies set up and I’m able to move around freely to help him, in the car while we are moving it feels so much harder. 

Traveling with Our Caregiver

We have one caregiver who has been able to come with us on our trips to the city so far, and that has been wonderful. She is such a trooper, as she has to sleep in the front seat of the vehicle on our way there and back, and she looks after Arden overnight while Brodi and I get some rest. We usually stay in a suite hotel that has one bedroom and a living room and kitchenette. With that setup, when we arrive, Brodi and I do Arden’s care until 10PM, while our caregiver sleeps. At 10PM, we swap and Brodi and I sleep while our caregiver watches over Arden while he sleeps. Luckily, Arden is a great sleeper in any location. On this trip, he was ticked right off in his carseat and as soon as we were in the hotel room and he could be free, he was all smiles. For the morning, we always request a late checkout so that our caregiver can get as much sleep as possible before we leave to head home after our appointment(s). 

Packing and Unloading

Parking and unloading is another procedure. Recently we were able to get a disabled parking permit for Arden, which has been immensely helpful for us. Especially in the winter, we want to be able to get him inside as quickly as possible so that he is not breathing non-humidified, freezing air directly into his trach for any length of time. With our caregiver present, it takes all three of us to get Arden and all of our belongings from the vehicle to the hotel. And to be honest, it should probably take two trips but Brodi carries way more than he should so that we can usually do it in one. 

Our Concerns for the Doc

After the past few weeks, I had a few concerns to bring up with our pediatrician. When you’re constantly watching every factor of your child’s health, I can admit that it’s hard not to pick apart every little change. Arden has been teething for the past few weeks, and in a matter of a few days, he went from having 2 teeth, to having 6. Teething can be difficult for typical babies, and it has been tough for Arden too, with an additional layer of concern for me. His secretions have been copious, and they’ve gotten a lot thicker. I am sure that what caused his big desat and bagging incident last week was simply a mucus plug that got lodged in his airway. I was able to get it out and help him recover, but it was still very scary, and it is not a moment that I will soon forget. With secretions becoming thicker, I have noticed that his oxygen saturation is lower than what it had been. Where before I counted on it being 96% or above, a lot of the time now he will hover around 93% for long periods of time. We have also stopped lowering his oxygen to ½ a litre per minute, and have had to go up to 1LPM around the clock. 

In addition to the status of his oxygenation, I have also been concerned about the last conversation I had with our orthopedic surgeon for scoliosis. When we were discharged from the hospital, Arden had received scoliosis x-rays, and his curve measured at approximately 34 degrees. We took him for x-rays again on January 26th, and this time, our orthopod measured the curve at around 44 degrees. He wants to meet us in person soon, because the measurements taken off of x-rays cannot account for positioning, or any flexibility in the curve. But it was still concerning to hear that his curve may have progressed 10 degrees. Usually interventions will not come into play unless a curve is 50-60 degrees, so even if it is progressing, we still could have some time before action needs to be taken. 

Another concern that I wanted to address was the condition of his trach stoma. Last time we visited our pediatrician, he treated it with silver nitrate, and since then, the granulation tissue has subsided, but the skin around the stoma has continued to look “angry.” We keep it meticulously clean, apply wound cream and antimicrobial dressings, and it still doesn’t look as good as it once did. It sometimes bleeds and I know that it is sore for Arden because he despises trach care each morning and night. It breaks my heart that we have to do that care when it always makes him cry. Moms and dads have to do the “necessary evil” tasks all the time, but I often wish for Arden that he didn’t have to deal with it. A trach stoma is essentially an open wound, and I would love nothing more than for him to not experience the pain and discomfort that comes with it. 

The Appointment

For the six hours it takes us to drive to Edmonton with Arden, our appointments sure go by quickly. Due to covid-19 protocols, only one of us is allowed into the appointment with Arden. I spent the majority of the time in hospital with Arden and have built a relationship with our doctors and specialists, so usually I go into the appointments and keep Brodi updated.

I am relieved to say that our appointment and the conversations I had with our pediatrician were incredibly reassuring. Naturally, almost everything our doctor comforted me with, Brodi had already mentioned in the past two weeks. But of course I needed to hear it from multiple sources in order to have my mind put at ease. Essentially, Arden is still doing amazing since we’ve been home. 

Weight wise, he has been thriving. In hospital, he struggled to gain weight, and was tracking in the 3rd percentile on the growth chart. Now, he has jumped up to the 10th percentile, weighing 7.95kg (17.5lbs). Length-wise, he is shorter. He won’t fit on a traditional growth chart for the combination of length and weight, and this is something that we will see for most of his life. Children with Escobar Syndrome tend to be very short, so it’s something that we expect with Arden. In terms of nutrition, he has done very well since we’ve been home. In a couple days, he will be 10 months old, and when he’s closer to 1 year, we will likely switch him from infant to pediatric formula in order to support his growth. 

As far as ventilation and oxygenation goes, Arden is still doing well. He is stable, he has just had some minor ups and downs. With Arden, we have an oximeter on him 24/7, and we are so used to tracking his oxygen saturation and  heart rate. It’s important for us to be able to see these readings in order to know that Arden is doing well. However, watching those numbers constantly can also lead to increased anxiety. When most children cry, they are likely to hold their breath and desaturate a little bit. But there is no oximeter to tell you it’s happening. With Arden, we see the numbers go down and it can be hard not to worry when they don’t immediately jump back up. Arden’s teething has taken a lot out of him in the past few weeks. Teething can be difficult for a lot of babies, and I need to remind myself that during teething times, he is not feeling 100%, and we will notice changes in his baseline. Brodi tells me this. I tell myself this. But sometimes when days of change turn into weeks of change, it can be hard for me to remain composed and optimistic. After telling our pediatrician that we try to keep his saturation above 96% at all times, he laughed at me and said it was a completely unrealistic goal. “Aim for above 90,” he chuckled, “No one is 96% saturated all the time.” With that in mind, I am reassured that Arden is still doing well, and that even with the teething, his oxygen requirements have barely increased. In other words, he’s doing great, his mother just needs to relax! 

Secretion management has also been a little bit more difficult lately, but our doctor reassured me that all of the thoughts Brodi and I had on the matter were correct. Teething has likely caused more secretions to build up and become thicker. However, as long as they don’t become yellow, green or purulent, everything is okay. Our pediatrician reassured me that the big desat incident he had last week that required me to bag him was in fact likely just a mucus plug. The fact that he recovered quickly afterwards was a good sign. 

In regards to his trach stoma, Arden didn’t require any silver nitrate treatment to be applied during this trip. That was a relief, because it can be incredibly uncomfortable for him. However, at the beginning of February, we did have his stoma swabbed for bacteria, and it had grown Staphylococcus Aureus. This is a bacteria that normally lives on the skin and sometimes in the upper respiratory tract. It can cause problems if there is a lot of the bacteria or if there are other symptoms that suggest an infection. At the time, his trach site looked irritated and red, but it did not appear infected. Without other symptoms to go along with the bacteria growth, we chose not to pursue a course of antibiotics. Yesterday our pediatrician explained that we made the right choice. Arden’s trach stoma still does not look as beautiful as it once did. The skin is very sensitive, irritated, and requires some healing. However, we were told that it isn’t nearly as bad as we thought. Our doctor prescribed Arden some Bactroban ointment, which is used topically to treat bacteria present on the skin. The ointment should take care of any growth of staf aureus and ensure that it won’t cause problems later. Other than that, all we need to do is keep the area clean and be patient. 

Although we weren’t able to see our orthopedic surgeon for scoliosis on this trip, our pediatrician commented that his curve doesn’t look nearly as severe as the measurements from his last x-rays suggest. In fact, he commented that “it looks more like 24 degrees than 44 degrees.” So that was incredibly reassuring for me. We will hopefully book something with the ortho soon so that we can get a more specialized opinion.

Our drive home was fairly smooth. It is long and uncomfortable, but just like everything, Arden handled it like a champ. For everything that our little man experiences, he really is the most resilient baby. On our drive home, he settled into his carseat and was able to have some great naps. When we arrived at home, we could tell that he became more relaxed, as if he knew that we had returned to our happy place. 

What Comes Next

We will have more follow ups coming with the orthopedic surgeon for scoliosis, and next month we will be getting in touch with our other orthopedic surgeon (for feet/ankles/legs), the occupational therapists, and the clubfoot clinic to begin making plans for his feet and legs. But for now, our pediatrician is happy with how Arden is doing, and he doesn’t need to see us again until April, unless we are coming to the city for other specialist appointments. For now, we will continue to work with homecare, Occupational Therapy, Physical Therapy and the SLP here at home to continue supporting Arden’s development. This mama is breathing huge sighs of relief, knowing that our little man is doing well and continuing to make gains at his own pace. I’m also sending out all the appreciative energy to my wonderful husband, who has continually reassured me and listened to all of my worries over the past few weeks. I know that we will enjoy the rest of the winter and the peace of being at home will continue to nourish our souls. 

XO, Rayel