A Lockhart Life Update….Finally!

It feels as if it’s been an eternity since I’ve actually had the time and energy to sit down and focus on writing a blog post. This spring has definitely thrown us some unexpected curve balls, and in general we’ve had a busy few months where the days seem to fly by. My opportunities to write usually only come when Arden is sleeping; either during afternoon nap or at night time. Lately Arden rarely falls asleep before his caregivers get here at 10PM because he’s so excited to see them, and then he has been up first thing in the morning signing “all done” and demanding to be released from his crib. That said, the “relax” time that I do get during the day is usually filled with tidying up and maintaining our house; tasks that have now become difficult to do during the times that our trach vented toddler is awake and on the go.

When Arden isn’t asleep, one of his favourite pastimes includes butt scooting all over the house and taking apart all the cords, tubes, and wires that keep him safe and healthy. Needless to say, I have to spend a lot of my day redirecting him so that he doesn’t compromise the very things that keep him alive and well. “It’s a good sign,” our pediatrician says. But we’ve always known that Arden’s curiosity and determination was a good thing. We know that he will progress in his abilities because he has a fiery spirit and a desire for more. 

On March 22, 2022 Arden tested positive for covid. It was a Tuesday afternoon, and on that Wednesday we were scheduled to drive down to Edmonton so that Arden could get his ptosis correction procedure done on his eyelids, and visit his pediatrician. He woke up in a state that was very different from how we are used to seeing Arden. Although our boy is not a fan of mornings, he is usually still spunky, happy, and ready to demand that playtime get started. On this particular morning, all Arden wanted to do was snuggle or lay down. Shortly after he got up, he went back to sleep on his chair in the living room. When he woke up, he would randomly cry, and just wanted to be comforted or hold my hand. At that time, he did not have any cold or flu-like symptoms, but I had a feeling deep in my stomach that something was wrong. On a whim, I decided to do a rapid covid test on Arden, and sure enough, it was positive. 

Arden getting covid is the one thing that we have feared more than anything else in the past two years. We knew that if he were to get covid, we would likely have to be readmitted into the hospital in order to manage the virus with the help of our medical professionals. After his test showed positive, I began calling to cancel and postpone his procedure and appointment in Edmonton, and to get advice from our pediatrician on how to monitor this illness at home, and how to watch for signs that he may need a trip to the hospital. 

That first day of covid was terrifying. Arden had a fever that wouldn’t seem to break for hours and hours, and our fiery toddler had turned into a meek little boy who just needed to lay down, cry, and rest. His heart rate was elevated to the 170s-180s multiple times throughout the day, and he needed to be put on oxygen during the day and night – something that he hadn’t required in months. During those first hours, I began mentally and physically preparing for what would happen if we needed to go to the hospital. Our area doesn’t manage complex kids like Arden, so I knew that if we took him to the hospital, he would likely have to be air ambulanced out to the Stollery in Edmonton. I flew around like a mad woman doing everything to comfort him, make the necessary phone calls, and ensure that our emergency bags were ready. 

Luckily, about midway through that first night, Arden’s fever broke. It was a HUGE relief, and suddenly everything else seemed more manageable. As scary as this virus is when you see it in your child, we have access to a lot of medical supplies that most families would not have. With Arden’s oximeter, we were able to very closely monitor his oxygen saturation and his heart rate. We knew when and if he required more oxygen, and we were able to give it to him because we have an oxygen concentrator machine. Whenever he did cough up larger secretions, we were able to suction them for him to help clear his airway. For days and days, our house became even more like a hospital scene, but that was fine by us, because we knew we had what it took to help our boy recover at HOME. 

It took a solid two weeks before Arden was feeling almost back to his baseline. In the meantime, Brodi and I also got covid. Luckily, when I started to get sick, Brodi had already taken time off work for our trip to Edmonton, so he was home and could care for Arden while I rested. The worst symptoms of covid only lasted two days for me, and then the next week and a half felt like a typical cold. However, those first two days were absolutely brutal. I had body aches that were so bad it hurt to roll over in bed, I was exhausted to the point where I slept 14 plus hours per day, and both my head and chest were filled with thick mucus that wouldn’t budge unless I breathed in the steam from a boiling pot of water on the stove. Brodi tested positive six days after I did, and fortunately his symptoms were fairly mild, and cleared more quickly than they had for Arden and I. 

The three of us having covid was stressful to say the least. The hardest part was seeing Arden have a huge regression respiratory wise. Before covid, he did not require extra oxygen going to his vent during the day or night, and now he needed it 24/7. Obviously with increased respiratory support, that meant no off-vent trials could happen. Where before Arden was doing 35 minutes off of his vent, 4 times per day, now he was on his vent full time. We were more than willing and able to give him the support he needed, but it was hard to see him have to forgo a lot of the play time activities that he had gotten used to enjoying. 

Today marks one month since Arden got covid, and he is still not 100% back to himself. He’s doing well, and we’re so proud of him for being able to manage this virus at home. To us, that’s a huge accomplishment and it’s all that matters. He is not doing as long of vent trials right now as he builds back up his stamina, he still has a lot of mucus, and he sometimes requires a bit of oxygen to boost his sats, but Arden is doing well, at HOME. And for that, we are incredibly grateful. 

After postponing Arden’s ptosis correction surgery, we learned that the new date for his procedure will be June 16th (tentatively). It’s a long way to wait and we were looking forward to our boy having a new view of the world for the spring! But it shall have to wait until summer. Our pediatrician has told us that Arden could take up to 8 weeks to return completely to his baseline respiratory status, and we are going to give him all the time he needs, while monitoring to make sure that he has all the support in place to feel 100% someday soon! 

Last week we had more appointments in Edmonton including plastic surgery, orthopedic surgery, urology, and Arden’s pediatrician. After having to take so much time off work due to covid, we didn’t want Brodi missing out on any more of our only income, so my mom and our night time caregiver, Agatha came with us. Mom drove and that in itself was a stressful enough job! On our way down on April 19th, we drove through an April snowstorm, and we barely made it to our 1PM appointments. When we got there, we were informed that we would only be seeing urology that day, and that our orthopedic surgery appointment had been combined with the plastic surgery appointment the next day. I was taken aback and disappointed that no one had given us a heads up before that day, but I figured it would be okay. However, the next day we arrived back at the clinic for our appointments at 9:30AM, and weren’t let in to get x rays and see the doctors until 10:20AM. It wouldn’t have been a big deal, except we had an appointment with Arden’s pediatrician at 10:30AM. While putting on an x ray vest to assist the techs with Arden’s hand x rays, I had to quickly text my mom the number to Arden’s pediatrician so that she could call them to say we would be late, and see if they could squeeze us in at another time slot that day. Of course I wasn’t able to call myself as I was communicating with x ray, plastics, and ortho! Luckily, our pediatrician’s office was able to squeeze us in to see him at 11:45AM… 15 minutes before the doctor had to leave for his rounds at the hospital. It was a very rushed day but by around 12:30PM we were ready to gather some sustenance and get on the road back home!

Arden has a few other big things coming this spring and summer. As many of you know, Arden’s condition causes him to have muscle and joint contractures. In his knees, it means that he currently cannot straighten them. Being able to straighten his knees would help immensely towards Arden potentially being able to walk one day. This year, Arden will undergo a procedure to place plates in his knees. The plates will essentially restrict the growth on the front of his legs so that the back can catch up. This is known as “guided growth.” As he grows, the plates will help to straighten the knees, with the hope that after approximately one year, his legs will be straight. With this procedure, and others, there is always the chance that the problem will reoccur once the plates are removed, and that his knees will again go back to being bent. However, this procedure is the least invasive option surgery wise, and the rewards outweigh the risks. 

The sun has been shining here over the past few days and I think that’s given our whole family a little burst of energy. This winter felt incredibly long for all of us. Last year, when Arden was littler, we didn’t seem to notice how cooped up inside we were, and for how long. We were able to keep him entertained in our house, and the winter really seemed to fly by during our first year home with Arden. Now that we have a toddler, his needs have changed, and we definitely felt the burden of winter. The cold makes it harder for Arden to breathe, because the air makes his secretions thicker. For most of the winter time, we aren’t able to take him outside for any longer periods of time. As people who previously enjoyed A LOT of outdoor time in the winter, this has been hard on Brodi and I. That said, as spring has announced its arrival, both of us seem to have gathered the energy to work on our own self care and well being. It’s important for our own mental and physical health that we continue to do some of the hobbies and activities that we love. Brodi has been making an effort to do simulated golf a few times per week, and I have recently started going to yoga classes again. We’ve made an effort to invite friends over for late night campfires in the backyard (when Arden is asleep inside the house with his caregiver), and we’ve been able to attend some family birthdays and holiday suppers. 

In four days, Arden will turn TWO! It’s hard to believe we will have a two year old on our hands! That said, this week I’ll be busy preparing to make his day as special as possible. I hope the sun shines down this week just to let our little man know how truly special he is! 

Until next time,

XO, Rayel