I wanted to wait until we saw our primary Respirologist in clinic post the bronchoscopy Evanna had in May and discuss our admission before I blogged about it. Obviously if you follow me either on my personal Instagram account or our family’s Facebook page, you would already have an idea of how it all went – but we were eager to go over the admission and discuss Evanna’s “future” respiratory wise with Dr. Dibartolo. To give a little background, Nick and I have been anxiously waiting for this bronchoscopy in hopes that after a year, Evanna’s trachea will have shown some improvement and we can begin decreasing her ventilator settings. After a bumpy April (our unplanned admission back to Edmonton in the PCICU), we finally were given a procedure date of May 16th. Nick had to work that day, and so with the help of one of our homecare nurses, we brought Evanna to the Alberta Children’s Hospital first thing that Monday morning. Due to the fact that Evanna was already going under anesthesia, we decided to ask General Surgery if they could quickly come change out Evanna’s PEG GTube for a button (it’s a much smaller and essentially a more “compact” Gtube). Evanna tolerated the procedure just fine, but unfortunately the Respirologist that performed the procedure came out and told me that even with Evanna’s current settings, he could still see some “malacia” (soft/weakness of the trachea); however, he felt we should still try Evanna at one lower setting on the home ventilator to see how Evanna would do. Evanna was taken back to the PICU to recover, and I quickly joined her to ensure she was being settled in properly. Like always, Evanna had a good snooze coming out of the anesthesia, and I admired her new GTube.
Over the course of the next several days, we tried fiddling with Evanna’s vent stings, but generally within 24 hours – she would exhibit a bit of respiratory distress, and they would have to go back to her original settings. As you now know, I was pregnant at the time (4 weeks), and so with a combination of pregnancy hormones – it was a pretty emotional few days for me. The trach life is extremely hard, and while we know we have a long ways to go, it would have been nice to see some progress, as getting to a point of “sprinting off the vent” would significantly make things easier (suffice to say, “what I wouldn’t give to just deal with an oxygen tank”).
Towards the end of our admission, they did send off a secretion sample, which tested positive for pseudomonas (it’s basically your average “everyday” germ). Normally we somewhat ignore those results as it’s very common for trach kids to colonize with that bug, but this time there were neutrophils found within the sample…meaning her body was fighting it. So while Evanna had a mini infection and wasn’t at her best, they decided that she would do well under our care, and sent us home with a prescription of tobramycin (it’s a drug we instil/administer into her trach several times a day for 2 weeks) for the pseudomonas. Several weeks leading up to the bronchoscopy, Evanna just wasn’t herself, and was exhibiting subtle symptoms that something was off. Within 24hrs of administrating the tobramycin, we noticed an immediate 180 in Evanna, and were pleased to see our very happy girl back (the biggest thing is she normally wakes up extremely happy, but for weeks we were experiencing quite awful mornings of major desats, terrible coughing spells, and an overall very grumpy baby).
About 2 weeks ago we finally had our regular Complex Airway Clinic (CAC) appointment and we finally got to discuss a few things. I think the first thing I asked was “we’ll be able to decannulate Evanna someday – right!?!”, to which our Respirologist chuckled and said “yes”. However we are now thinking that we could now be facing one of the more “longer trach journeys”, and instead of just a few years, we could be looking at many. They are still VERY happy with how well Evanna is doing at home, and they were THRILLED at how quickly she began to clinically improve after administrating the tobramycin medication. Now I know what you’re thinking – obviously we didn’t do Evanna’s bronch when Evanna was at her best and we should do it again soon, but with my #MedicalMamaDegree, I already knew it was much more complicated than that. You see, while maybe Evanna would have done better had she been at her best, and maybe we could have successfully weaned a setting on the ventilator –like all humans, we all deal with getting sick once in a while and our body overcompensates to fight whatever “bug” that has invaded our body. Basically Evanna needs to be on high enough ventilator settings that would support her even if she’s not at her best, which means that while Evanna could maybe handle lower settings when she’s well, we would see more devastating consequences if she fell ill and was not properly supported from a respiratory standpoint.
The respiratory team did decide however that maybe it’s time to plan a “combined clinic”. While they are EXTREMELY intertwined specialities when it comes to treating trached patients, we often see respiratory and ENT (Ears, Nose & Throat doctor/surgeon) during separate visits (and we see respiratory way more often than the ENT). The ENT is the one who surgically placed the tracheostomy, and they are the ones that run procedures and then eventually decannulate (take the trach out) the patient; but the Respirologist is the one who somewhat follows the patient on a more consistent basis and determines the course of action/treatment plan – essentially “maintaining” the patient during the duration of being trached (did I lose you yet?). Basically it’s good to meet with BOTH specialties at the same time to help paint a clearer long term plan that is mutually agreed on between the two specialty’s (sometimes easier said than done when it comes to doctors lol). So we have been booked for a “combined clinic” at the end of September that will entail having both our primary Respirologist and ENT present to discuss where we should go from here. They will probably do a basic bronchoscopy at that time (it’s way less detailed then an formal bronchoscopy that’s done in the OR and requires Evanna to be sedated) to have a quick look down her trachea, and maybe we’ll see some improvement over the summer and decrease a few settings then (not a guarantee by any means, but a possibility).
What this means, is other than completing our special immunology blood work in July (which just requires a quick trip to the hospital lab on a Thursday), we essentially have very little medical appointments this summer. In August we have one check-up with our pediatrician and one basic CAC appointment before our Combined Clinic at the end of September. We are waiting to hear about our next cardiology appointment, but we already know it also won’t take place until September either. So for the entire summer, we have just two little check-ups! How freakin amazing is that!?! We of course still have our more regular therapy sessions to continue to work hard on Evanna’s physical and cognitive development here at home, but from a medical standpoint, Evanna continues to do just absolutely amazing.
On a personal note (this blog isn’t always about Evanna you know….), I actually have several fun summer activities planned, including a girls cabin getaway in a few weeks, a night at the Calgary Stampede, and I’m even attending a music festival for an entire weekend in August with friends. September then brings a friend’s wedding that Nick and I are both a part of, and so that also brings a host of fun activities as well. Basically we’ve come to a somewhat steady moment (which I am fully aware it won’t last forever), and we’re enjoying it while we can.
xo The Irvine Family
PS. I know I don’t post too much on our family’s Facebook page, as I tend to reserve it for medical updates or major milestones/announcements, and I only post a few times a week on my Instagram, but for those who would love to see more casual moments of Evanna, feel free to follow me on Snapchat. It’s a place that I feel I can be less formal and it’s super easy to snap quick daily moments of Evanna. My username is kierra.irvine