Wednesday, June 29, 2016

may's bronch + summer plans

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

Thursday, June 23, 2016

when life hands you another lemon

I think it’s fair to say that Nick and I have dealt with more than our fair share of “lemons”, and we have done our very best to “make lemonade” of it. We’re only four years into our marriage, and I know we have lots of trials ahead of us – but the fact that we’ll never “be out of the woods” with Evanna has made me feel like we should get a “free pass” on what I consider the more common lemons (if you get what I’m saying) …at least for a little bit. Don’t get me wrong, we have had many blessings bestowed upon us, and life is somewhat good right now (at least when you compare it to our 2014/2015), unfortunately it’s hard to not be disappointed when you feel like your family deserves nothing but a big fat break.

As a couple, we had always decided that once Evanna was discharged and I was back at work, that we would work on expanding our family again. We love being parents, and felt that we were more than ready to add another child to the family. We were cleared by genetics a long time ago (Evanna’s chromosomal deletion that cause her heart defects was completely random), and we feel a sibling would be so great for Evanna. Recently we started trying for another baby, and were pleased that just like Evanna, that we got pregnant right away. We were so excited, and began to tell close friends and family as we saw them in person (we told most of our family during Evanna’s 2nd birthday party), and would make it public once we got our family photos done at the end of June. I knew which hospital I wanted to deliver at, had an OB picked out (with the help of some connections), and made all the appropriate arrangements for blood work and ultrasounds. June 7th was my first ultrasound, and was so excited to get this formality out of the way. Now, I’ve had my fair share of ultrasounds and ECHOs with Evanna, and kind of know what the whole thing entails. During the ultrasound I could definitely see my 7 week uterus in in front of me, but I began to wonder where the heck the fetus was, and if I was missing something. Finally the doctor came and talked with me. He informed me that while I was indeed “pregnant” (again, my uterus was measuring at 7 weeks), it looks like it was not a viable pregnancy and for some reason, the pregnancy did not take. It happens and it's actually quite common (1 in 3 pregnancies end in miscarriage), and so I guess I learned that I too am not immune to common things either.  
I did my best to end my conversation with the radiologist as quickly as possible (I’ve had more than my fair share of “genetic talks”, and so I wasn’t interested in having another one), and I’m pretty sure I left them puzzled at my lack of emotions. It’s not that I wasn't upset and disappointed (because I truly was), but when you’ve had more devastating ultrasounds and conversations with doctors, you become somewhat desensitized to them. I got into my car and drove home to inform Nick (he was with Evanna) of the news. He was very upset when I told him, and we just hugged and cried for a few minutes, not saying much else the rest of the evening. We both agreed that while we were disappointed by the turn of events, that things could be worse (miscarried much later into my pregnancy, etc), and that obviously we will just have to wait a little longer for another baby. The week or so following was a little emotional, and I’ve experienced a few waves of different emotions. To be honest, there have been a few moments of anger and frustration. In my opinion I feel we have followed all the rules and done everything “right”, yet we keep getting thrown these huge curve balls. All of our current life trials are not of our own doing (I may or may not have some strong personal opinions about people who are in a pickle of their own doing from poor decision making… but that’s a different topic), and so I guess I’m somewhat at a loss as to what more Heavenly Father wants from us. Excuse me while I have a little Job (think popular bible story) moment.

As of today, my body is still technically 9.5 weeks pregnant, but there is no fetus and I’m still waiting for my body to figure that out and begin the miscarriage process (and yes, this means I am experiencing all the regular pregnancy symptoms – up until last week, that was morning sickness; and this week I’ve begun to start “showing”). If it does not happen in the next couple of weeks, I believe I will either be prescribed a medication that will kick-start the process or eventually proceed with a D&C (this is worst case scenario…but our family has a pattern with those). I am going away for a little heart mama retreat with some friends the second week of July (which means oodles of daddy/daughter time for Nick and Evanna), so I’m hoping this will sort itself out before I leave. We will then concentrate on moving to our new house next month, enjoy our summer plans that we have in store (hopefully Miss Evanna continues to behave herself), and continue to focus on Evanna and her recovery. We will try again when the time is ready, and hope this is just another little blip in this thing called life.

Thank you so much for reading this. I’m aware that this is a very sensitive topic, and l also know that my individual view of it may be a little different from others who have/are going through the same thing. I definitely know that I am responding to this situation much differently now then I would have before Evanna. The experiences I have been through over the past several years have definitely changed the way I think and the way I perceive a lot of things right now…but this too is another topic for another day.

xo The Irvine Family