Cardiology + GTube Surgery Update

Thanks Great Aunt Vikki + Jordan for the beautiful silver bow!

When I decided to publicly announce Evanna’s GTube surgery date, I was aware that there would be a risk of things changing. When you work, live and breath healthcare – you learn real quick the inner workings of it, and how the system works.

Unless a procedure, test or surgery is an emergency, things have a tendency to get bumped (generally for other emergencies) on a regular basis. I can’t tell you how many surgeries (I can for sure think of two at this very moment...both her first open heart surgery and her first diaphragm plication), tests (CT’s, xrays, etc) and procedures (bronchoscopies) that we experienced bumping. While there was a lovely opening for us on December 31^st for Evanna’s GTube, just a day later, the clinic called me realizing we had bit of a hiccup – we need an anesthesia consult! You see, this will be Evanna’s FIRST surgery here in CALGARY at the Alberta Children’s Hospital.  The other 7 have ALL taken place up in Edmonton, and not only are they the heart experts, but they know Evanna pretty darn well (and in return, I know quite a few of the anesthesiologists by name too). So while this is a fairly straight forward surgery (let’s just say that out of all of Evanna’s surgeries, Nick and I are placing this one at the bottom of the list of ones to be nervous about), Evanna is “still Evanna”, and on paper she freaks people right out! So before we step foot into an OR here in Calgary, they want a consult with anesthesia done first. I definitely don’t have a problem with that, as it’s better to be safe than sorry, but I’ll probably just tell them to get a hold of her Stollery records, and even call Dr. Cave (he’s one of the main pediatric anesthesiologists, head of the PCICU AND our primary intensivist up in Edmonton), as he knows Evanna VERY well. We understand there is always a risk when going under anesthesia, and being that ACH doesn’t deal with heart babies too often, I definitely understand them being extra cautious. We’ve never had a problem in the past, so I’m sure once they double check everything, we’ll be set to go. At the moment we’ve been rescheduled for January 14th, so that’s still not too far away.

Evanna watching "Frozen" while getting an ECHO done

12 Lead ECG (EKG)

Today we had another Cardiology appointment. Our cardiologist just wanted to have Evanna checked out before the holidays (her ECHO continues to show Evanna remains stable), and talk about New Year plans in regards to her heart. Dr. Fruitman presented Evanna to the Western Canadian Conference last week, and it was decided that before they determine a Cardiac Cath is necessary at this time, they want some new imaging done (in the form of a CT Angiogram) to see what her collaterals have been doing the past 7/8 months. Back in May, her collaterals (the tiny vessels that Evanna’s body created to get blood from her heart to her lungs) on the right were doing okay, and so they want to see if they need any further dilating or to just left alone. The collaterals on the left are definitely VERY concerning, and on most days I don’t like to think about it. They were incredibly narrow and Dr. Rutledge couldn’t even get a wire through them last time – meaning they are at a huge risk of occluding (blocking off). While the medical team isn’t too hopeful that there will be much change (and they could already be blocked off), I’m still holding out for a miracle. Again, when people look at Evanna, they only SEE her respiratory issues, but that will resolve – it’s her heart that is and will always be our biggest concern. So I know MANY people keep Evanna in her prayers, and if you want the ONE specific thing that is the MOST important to us – it’s for her collaterals to GROW. Nick and I are not unrealistic, but we’re still in a place of hope and this show is far from over.

Minus our worries about her left collaterals, Dr. Fruitman and Patty (our main Cardiac RN) are just thrilled with Evanna’s progress since we’ve been home. They think she looks absolutely amazing and continue to compliment on a job-well-done on our end as her parents and advocates. With our new lower concentration of calorie intake, Evanna has lost weight…but that’s actually okay! Between September – November, Evanna’s weight just skyrocketed, and was being overfed. So we diluted her formula and hope she relatively maintains her current weight while we wait for her length to catch up. Last night, Nick’s mom even noticed that Evanna doesn’t look as “puffy”, and trach care isn’t as hard to do, as we can get to her neck to clean her tracheotomy. Most heart mamas reading this will probably be weirded out that our “heart baby” is gaining too much weight, when normally they have the opposite problem…but it’s because Evanna is supported by a home ventilator – so she doesn’t require as many calories, as her body doesn’t have to work as hard. Basically it’s a tough little balance to determine what the best level for Evanna is, and it’s going to be ever-changing for years to come.

We didn’t change up any of her meds, but with an upcoming surgery, we just want to leave things as they are until after January.

We didn’t set up a new Cardiology appointment yet, but Dr. Fruitman is going to talk to the general surgeon and see how long he thinks we’ll be admitted for the GTube surgery, when we think doing the CT Angiogram will be best (either during the same admission, or a separate visit all together), and whether Anaesthesia needs a new ECHO (even though we just did one today) before her GTube surgery in 3 weeks.

On our way home, the Anaesthesia clinic called and scheduled a consult for the second week of January, and minus the CT Angiogram timing, everything is all set for a busy January.

xo The Irvine Family

Surgery #8 Update

So we got a surgery date for Evanna’s GTube, and it looks like we’re squeezing in one more surgery before the year is out! In true Evanna form, it also lands on a holiday – New Years Eve (a lot of Evanna’s major hospital events this past year all happened on holidays …. Cardiac arrest just days before Halloween 2014, airlifted by STARS to the Stollery Children’s Hospital on Mother’s Day, and Septic Shock on Canada Day)! Personally I am kind of okay with this date (I’m sure others would have asked for a different date), but because Nick happens to work (we’re working on that detail) and we didn’t have any New Years plans to begin with, I thought why not? Really I am just shocked at how fast this is all happening. Due to the fact that this is considered an elective surgery, I anticipated mid to late January, and even into February before we would see the inside of an OR again, so I was surprised to hear from the General Surgery Clinic just one business day after our referral went in, and a surgery scheduled just a few weeks after our consult appointment. Overall I’m really looking forward to a “tubeless face” and not have to torture Evanna with sticking tubes down her sweet little nose – she’s had it for WAY to long.

Nick and I of course are NOT looking forward to being admitted, when it seems like we just got discharged, but hopefully this will be the last “surgery” (we still have some cardiac procedures planned in the very near future) for a long time. I really think “no surgeries in 2016” can be our theme lol.

I called the Cardiology Clinic this morning to let them know and keep them in the loop, as we are in the middle of figuring out Cath plans. While we’ll get more information at our next Cardiology appointment next week, the Cardiac Nurse (Patty) informed me that it looks like the Stollery Medical team would like for Evanna to have a CT Angiogram here in Calgary before making further plans, but I’ll be sure to update everyone once we know more.

As for other updates, we are definitely keeping very busy. We’ve begun to do some “Taste Therapy” with Evanna, and she’s doing alright. She plays with the pureed foods, and will put her fingers in her mouth from time to time – followed by making a funny face. I do forsee that this will be a long process, but that’s why I am happy that we’re proceeding with a GTube now, as it should help with some of the food aversion, and there are some negative problems with having an NG for a prolonged amount of time (tunneling in the nasal cavity, continued vocal cord irritation, etc). 

We’re also doing physical and occupational therapies, and Evanna has definitely made lots of progress since we’ve been home. While I had hoped she would be sitting up on her own by now, just a few months ago she would cry and have a major desat when we did tummy time with her, and now we can’t keep her off her tummy and is such a rolly-polly (which means she’ll often disconnect herself from her home vent several times a day).  Evanna is also down to 3L of oxygen and doing great. I know the respirologist said they don’t often makes changes during the winter months, but once we get the Gtube and Cardiac stuff behind us, I definitely am going to push another trial to see if Evanna can handle 2L.

We’ve hired and are training a few more homecare nurses to help cover a few days shifts (we get 20 hours a week for DAY purposes), and be backups for nights. I will say that we’ve been pretty blessed in regards to our homecare staff. In the trach world you hear of some awful horror stories when it comes homecare staff, but we’ve been fortunate in finding some awesome girls who have been reliable, and they just absolutely love and adore Evanna. One benefit to homecare is the goodnight sleeps I get….which is something you never hear a new mom say, but our circumstances are unique, and I’m just trying to look on the brigtside – plus it won’t be like this forever and it’s for Evanna’s safety.

I go back to work for a few days a week at the end of December, which is kind of exciting. I will mainly work on Nick’s days off, and I'm glad it will get me out of the house and have some adult face-to-face interaction. Just another step towards some normalcy. I have some exciting plans in the works for 2016 and we just submitted our final upgrades for the new house, so hopefully they’ll break ground sometime in January.

xo The Irvine Home

Evanna’s New Nursery Reveal

Designing a nursery for a new baby is something that every mom loves doing and thinks about from the moment she finds out she is pregnant. Due to so many unknowns, we originally just got a crib set up, but had major plans in mind once we brought her home.  When Evanna was able to come home at just 10 days old (which we didn’t expect), Nick’s mom and sister rushed around getting the rest of the room set up (changing table, antique rocking chair), while my mom and sister finished washing and folding all of Evanna’s clothing. For those 5 months that Evanna was home, she primarily slept in our room in a bassinet beside our bed (thanks again Kassandra for the bassinet), and it was only just before we went up to Edmonton for her first open heart surgery, that we began transition Evanna to her crib.

When it came time to think about bringing Evanna home again after she got her trach, I knew things had to change and we had to make space to accommodate her new equipment and night staff. I’m apart of a private trach mama Facebook group, and people often share their child’s room setups. It was definitely helpful and I got a few good ideas from them, but I was dead set on making sure her room would still be like a baby’s room and NOT a hospital room. My main focus was to make sure we kept it clear of things we didn’t need and still make it a space that was both cute and functional.

Finally, since I was pregnant, I absolutely fell in love with these children play teepee's and knew I wanted to have one made for our own home. Earlier this year, when Evanna was still in the ICU, I contacted Courtney from Tnee's Teepees about a custom order. I thought it would be a great slurge for a long overdue Christmas, Birthday and coming home gift which now includes a second Christmas. She loved the idea and I provided her with links to fabric that I fell in love with on minted.com. I also became aware of a local quilter named Cherisa of The Blanket Thief and asked if she would make a quilt to coordinate a matching blanket to complete the look. I am over the moon with the results and while it's more of a decorate piece at this very moment, I know Evanna will love playing in it years to come (her cousin Alexa already proved my point as to it's awesomeness, as it was a complete hit with her). The Teepee, Quilt + matching Floor Pillow arrived this past month and  so I was finally able to finish Evanna's room and take some pictures!

** Before you scroll down through the pictures, there are technically a few things missing that are added when Evanna goes to bed – like the humidifier has a pot that is filled with distilled water, and her feeding pump that we use in the living room until we bring her upstairs. You also can’t see a large emergency oxygen tank under her crib encase she either needs to be bagged or the power goes out. Anyways, there are a few other things, but I’ll explain below. Enjoy!

This was made by Evanna's Uncle Kris. He is super talented, and I would love to pass along his information to anyone interested in their own creation

The Custom Felt Name Banner was given to us by one of our new night nurses. It was made by a family member who owns an Etsy Shoppe - link provided near the end of this post

Stunning handmade quilt made by The Blanket Thief. 

Custom Teepee created by Tnee's Teepees // Evanna's dress from her Baby Blessing can be seen in the background

Storage to hold trach supplies. Additional supplies are kept in Evanna's closet and our basement // Our emergency trach kit is contained in the blue bag // Custom Evanna CHD doll made by JennyLynnDolls 

Evanna's Home Vent, Humidifier (missing the pot and distilled water) + Suction Machine

Cozy corner for our nurses to sit, watch Evanna and do their charting. We originally had an antique rocking chair in Evanna's room that belonged to Nick's mom, but it wasn't the most comfortable chair to sit in for a 10 hour shifts, so we switched it out for a bigger arm chair.

"Evanna's Room" Sign by Kris Jensen (Message me for contact information) // Arm Chair, Glass Table, Medical Cart & White Storage Unit by IKEA // Custom Teepee by Tnee's // Custom Blanket & Teepee Pillow by The Blanket Thief // Custom Name Felt Sign by Felt from the Heart 

The only thing I would love to add is some book shelves, but now that we’re moving next summer, I’m trying to avoid putting more holes in our walls and can wait until after we move. Hope you all liked it, and overall I’m quite happy with how it turned out. 

xo The Irvine Family

Cardiology/FEES/New Pediatrician Update

We did it! Our week of multiple medical appointments has come to an end, and considering our terrible weekend leading up to it – it actually didn’t go as bad as I thought it would. Evanna handled herself like a champ and maybe – just maybe, is getting use to car rides.

First up was Tuesday (Dec 1) with our back-to-back appointments on opposite ends of the city…oh and did I mention that it was also on a day that Nick had to work? I arranged for one of our day nurses to work (we only get about 2 days a week of daytime nursing hours), but based on Evanna’s weekend (she was incredibly retchy), I was anticipating the absolute worst. Thankfully Evanna seemed to finally get over this episode (which I’ll talk about more further down this post), and our nurse was a great help. First was Evanna’s RSV shot, and while that went well, I was definitely a nervous wreck in that waiting room – THAT’S RIGHT, I have now become that mom full of panic and anxiety as my child had to sit in a room full of strangers and more importantly – icky bugs. When your child is more prone to catching a virus (via the trach) and an illness can equal a hospital admission, then you can see my dilemma. I never wanted to be one of those “helicopter moms”, but after spending over a year in hospital, it’s kind of the last place I wanna be right now (admissions are inevitable due to future procedures and surgeries…but I’d like to avoid unnecessary trips to the hospital, thank you very much).

We then headed up to the hospital for our cardiology appointment. I actually almost cried with tears of joy walking through those clinic doors as an OUTPATIENT – it just felt so good to be there for a regular checkup. First they did an ECHO, and though the tech had a mini wrestling match with Evanna’s legs – with the help of good ol’ Frozen, Evanna did very well. She then had an ECG (EKG) and then finally got to see Dr. Fruitman and Patty (the Cardiac Clinic RN). Dr. Fruitman said that her ECHO was stable (yeah!!), but it was definitely time to discuss Evanna’s next Cardiac Cath that was due last month. At the moment, Evanna requires a Cardiac Cath every 6 months so they can see her collaterals and maybe even try to balloon and stent them, but because we were trying so hard to get Evanna HOME and she was stable, her medical team (including her surgeon in Edmonton) decided it was okay to put it off until the New Year. So Dr. Fruitman stated that she would present Evanna in the next few weeks at Cardiac Conference (a conference between the cardiac surgeons and cardiologists in Alberta, Saskatchewan and Manitoba) and get Evanna booked. We also discussed on how to actually GET Evanna to Edmonton. Normally this is kind of an outpatient/mini admission procedure that we would drive up for, but Evanna isn’t exactly the best traveler at the moment AND she now comes with a lot of equipment/accessories. While it’s not done too often for an outpatient, it was agreed that we will admit Evanna down here at the Alberta Children’s Hospital and then transfer her up I believe by ground ambulance. Evanna is on quite a bit of oxygen and high ventilator settings, and overall it will just be safer for her to transfer her verses going by car. Over time as Evanna gets stronger and on less oxygen/lower vent settings we can definitely drive to Edmonton ourselves, but in the meantime Evanna is still considered quite “acute”, and we just want to do everything we can in the safest way possible.

Another major thing we discussed was Evanna’s calorie intake. Over the last several months, every time Evanna is weighed, it continues to climb faster than we would like too (and normally cardiac kids have the opposite problem). We’ve already decreased her calories a few times, but it seems like we haven’t found the right spot. You see, though Evanna is 19 months old, due to the fact that she’s supported by a home ventilator and still somewhat “sedentary” (which will change as Evanna continues to become more mobile), she does not require as many calories as someone else her age. It’s something we will always continue to tweak over the next several years, but in the meantime we have been given the go ahead to further dilute her formula (so she still receives the same volume for hydration purposes, but it will contain less calories), and see what her weight does over the next month or so.

We are booked for another cardiac appointment just before Christmas to see what came of the Cardiac Conference, and hopefully get a timeline for the Cath.

On Thursday Evanna finally had her FEES test that we’ve been waiting for a long time to do. FEES stands for Fiber-optic endoscopic swallowing evaluation (FEES). A thin, flexible lighted instrument (endoscope) is passed down the throat so the ENT can see the esophagus. I initially thought Evanna would fly through it, as she was completely orally feed the first 5 months of her life and it’s not like we have secretion issues (we never have to suction her mouth unless she’s puking), but it seems like we might have a longer road ahead of us then I thought. It has been determined that Evanna is somewhat at risk for aspirating as they saw “bubbling” secretions and her upper airway was inflamed and swollen. Dr. Drummond said this means that we’re looking at a longer road ahead of us in regards to getting Evanna back to feeding and to be prepared for one to a couple of years. He did however say that he would like Evanna to receive “tastes” of foods and that the ENT nurse will call us next week with instructions on how to proceed.

The moment Dr. Drummond said all of this, I immediately asked about a GTube. Now that we know this will be a long term thing and getting back to oral feeding will be a longer process, I feel like an NG isn’t for us anymore. Yes, it involves another surgery, but there are lots of benefits to a GTube and we can finally get rid of the darn NG. Nick and I do not enjoy putting an NG down her nose and I feel like we’re getting to a point we’re it’s a little detrimental (causing a little bit of trauma and the inflammation) verses being a benefit. It can also cause oral aversion as it can actually get in the way and be an issue with feeding therapy when it’s safe to finally feed Evanna (it’s a tube going down your esophagus, so I’m sure she feels it every time she swallows). Finally, the GTube will allow us to feed Evanna other stuff besides formula, as some other GTube mamas have stated that we can feed her some "blended" foods and will get me all those resources when the time comes. Dr. Drummond said it’s definitely something we should consider, but to talk to our pediatrician about to put a referral in for us.  

On Friday we finally got to meet our lovely pediatrician. We actually had a different pediatrician last year before Evanna’s first open heart surgery, but Nick and I weren’t huge fans of him. When I began to talk about the situation to another local 22q mom (who happens to be a family physician herself), she mentioned Dr. Culman who apparently was very knowledgeable and had lots of experience with both medically complex kids and has a few 22q11 kids under her care. So just before we transferred out of the PICU back in August, I asked if they could get us a referral, and thankfully she accepted Evanna as a patient. During the appointment we talked about Evanna’s retching episodes and stated that after talking to several 22q moms, I feel Evanna has something called Cyclic Vomiting Syndrome (CVS) as it’s listed as one of the symptoms of DiGeorge Syndrome. As there really isn’t a test for CVS, it’s hard to diagnose so Dr. Culman asked me what treatments others were doing. I first asked if we could get a prescription for Zofran to help elevate the severe nausea Evanna experiences and well go from there. There are a few other things that other 22q moms mentioned to me for treatment options and so if the Zofran doesn’t work, we’ll try those and maybe even consult with a GI doctor.

We then brought up a GTube, and Dr. Culman agreed immediately. Most kids with trachs have GTubes anyways, and an NG is only meant to be used as a short term option. A GTube is a safe and reliable way to feed a child for a longer period of time. You don’t run the risk of formula going into their lungs and if Evanna gets sick, there is a secure way to give Evanna meds and keep her hydrated. They’re really easy to keep clean and change out and once Evanna doesn’t need a GTube, you just take it out and the hole closes on its own. Dr. Culman said the process can take a few months however (it’s not an emergency surgery… so we now have to learn to be patient for surgeries – something we’re generally not use to lol), but she’ll put in the referral immediately.

So that’s basically where we stand from a medical standpoint. I feel like we’re still in that “transition” period of being home, but as more and more time passes, I know we’ll see the inside of the hospital less and less. Everyone is happy with how Evanna is doing and we will continue to move forward as Evanna allows us too.

Basically in the immediate future, we are going to continue to work on Evanna’s development (PT rescheduled and will be coming this week!), and she has a Cardiac Cath in Edmonton at the Stollery and GTube surgery planned over the next several months. As for other medical appointments for the month of December, we have a Complex Airway Clinic (CAC) appointment this week where we hope to lower her oxygen requirements from 4L to 3L and do a planned trach change. Then we have another RSV shot in a few weeks and a Cardiology follow-up just before Christmas to find out the Cath timeline.

We have some fantastic Christmas plans for Evanna, and I can’t wait to enjoy our first real holiday at home (in Canada, Thanksgiving was back in October)! We’ve almost been home for an entire month and we’re thrilled at how smooth everything has gone so far. We have amazing friends and family who have been so accommodating, and I feel like we’re finally getting back into our old routine. Our friends have been so great and I feel so blessed to have them, as we’ve had several get togethers over the last several weeks since we’ve been home, and knowing how much work it is to take Evanna out, have allowed all the gatherings to be at our house. We’ve been having so much fun and I seriously can’t describe how amazing it's been to just LIVE!

xo The Irvime Family

DISCHARGED

So I know we've been discharged for awhile, and "Home" would probably be a more appropriate title... but I've waited a LONG time to write those words in a blog title! 

I swear I’ve started this blog post several times, but I either don’t save it properly or had much time to work on it. Then everyday, I get further and further behind and the task has become somewhat daunting. The last real blog post/medical update was back at the beginning of September, and we’ve made some major progress and hit some awesome milestones since then. The biggest is obviously our DISCHARGE on November 9!! That’s right, we are officially HOME, and this admission has finally come to an end. We obviously still have a long way to go in Evanna’s recovery, and unfortunately Evanna has several surgeries and procedure in her future, but right now, Nick and I are just savouring this moment and trying to not get caught up when thinking about the future.

I just want to quickly highlight some of the major milestones that haven’t been documented here on the blog and relive some of the awesome moments we had. So since that last real update, Evanna was successfully transitioned from NJ to NG feeding. For almost an entire year, Evanna has been kept NJ feed for safety purposes while she was intubated, and then there never seemed to be a right moment to transition her, as something would happen (infections, surgeries, procedures, etc) to delay it. Finally once Evanna became line free and completely off sedation medication (withdrawals didn’t help either….), we were in a good spot to make the transition. With Evanna we can never do anything quickly, so I set out a plan to go nice and slow. Well, it did work, but we had to make tweaks along the way… due to the fact that Evanna was handling the transition well, but was becoming a “hangry” baby, we did speed up how fast we were increasing the amount of food we were giving her towards the end. Normally you would titrate the NJ feeds down while increasing the NG feeds, but for some reason, Evanna’s tummy doesn’t like 2 tubes going through it, so we had to completely stop NJ feeds, pull the tube and just feed Evanna through her NG. Overall, it was a stressful few days, and it was almost as painful as watching a baby go through withdrawals, but all was well once we reached full feeds and Evanna was able to rest comfortably (it’s moments like this where I wish you could reason with a baby lol).

The first week of October was a busy one for us. First I held a little party to celebrate #EvannasHeartHospitalversary. Many heart families celebrate the anniversary of their child’s first open heart surgery, but because we were still hospital, I felt it was important to celebrate BOTH milestones. It’s not very common for a child to spend an ENTIRE year in hospital (it does happen, but again, it’s not something you hear about everyday), so not only did I want to celebrate the one-year mark since Evanna’s first major OHS, but also our journey and everything that our family went through. It had been an incredibly hard year for Nick and I, and while it could have easily broken us, it only made our bond stronger. While I was proud of how well Nick and I endured, the night before October 6 was incredibly emotional for me. Our first year as family should have been spent making fun memories, but instead it was spent by our child’s bedside while she recovered from surgery after surgery and complication after complication. There were days that I hated social media, because while my friends were enjoying the holidays and family traditions, Evanna was intubated and fighting for her life. At times I hated “how unfair” our life was and was very angry at our predicament, but thankfully those moments were few and far in between. As weird as it sounds, I needed to celebrate this milestone, otherwise I might have done the opposite.  I had a special crown made for Evanna, invited our close friends and family, and arranged for a special cake to be made through an organization called Icing Smiles (blog post to come). It was a great afternoon, and it was great to see some people that I hadn’t seen in a very long time.

A few days after the party, Evanna finally went for a little trip back to the ICU for a trach transition. When we initially came out of ICU, they told us that out biggest hurdle towards taking Evanna home was the fact that Evanna had a cuffed trach. They really don’t like to send kids with cuffed trach’s home (not impossible, but something they like to avoid if at all possible), so it was decided that once Evanna was stable and spent a month out of ICU that we would try and switch Evanna to a cuffless trach and see how she would handle it. Well, we tried to do it at the end of September, but due to a bed shortage in the ICU and then Evanna’s party, it got held off until October 5. I often get people telling me that things will happen when they’re suppose too, and more often than not, it ends up being true. On the eve of October 6 (our Heartiversary), and on Day 365 in hospital, we took Evanna back down to the ICU and try to transition Evanna to a cuffless trach. We originally planned to spend at least 24 hours in the ICU to give the RT’s some time to fiddle with her settings, but within 6 hours of the trach change and no fiddling required, the intensivist stated that Evanna was doing just fine and didn’t really need to be in the ICU any longer. So once the resident completed the paperwork, Evanna was taken back up to Unit 2 later that night, and all was well.

After Evanna’s trach transition, we had a big meeting with her medical team to discuss where to go from here. Just before Evanna transitioned out of the ICU at the end of August, we had this huge transfer meeting, and it was discussed that Evanna would most likely not be discharged until closer to Christmas, and even that wasn’t a guarantee. However, due to how well the trach change went and how uneventful the whole process was, it was decided that maybe Evanna was ready to go home. Yes, there were still some small issues, but none that were big enough to keep us in hospital anymore, and so it was time to really work towards discharge. When it came time to pick a time frame, they asked for our opinion, and I asked if mid to late November was appropriate, to which they responded with yes. You see, with a trach (and vented) baby, discharging for the first time is not a quick process – Nick and I needed to make sure we were fully trained to take care of her, we had to proper equipment in our home, and have staff (who were also properly trained) in place to watch and take care of her at night time. This we were told would be our next biggest hurdle, but I was not about to let that stop us from bringing Evanna home. Over the past year, Evanna has garnered a little bit of an audience that just absolutely adores her and so I decided to use that attention to help us find nurses! Nick and I decided to do “self managed care”, which is an option here in Alberta that puts me and Nick in charge of who takes care of our daughter (yup – that’s right, we essentially are bosses, hire and train whomever we want), but are funded through Alberta Health Services (which means based on Evanna’s needs, we’re given a certain amount to pay for night nursing plus a little extra for day respite care). So I put an ad up on the internet, and pleaded for people to spread the word and share that we were looking for nurses – and it actually worked! Within a day, I had several resumes in my inbox, and by the end of the week, I roughly had 50 great resumes of people wanting to care for our little girl. It was actually a little overwhelming, and became an emotional process… over the past year, Nick and I felt like we only experienced setback after setback, and for once things seemed to being moving forward at a quicker rate and without any hiccups (so yes I cried, but because I was so happy and was feeling so blessed). A one-point Nick even asked me if this was really happening and if I thought Evanna was actually going to come home this time – to which I smiled and said “yes”. There were times where we would avoid using certain words like “home” and “discharge”, as we felt it always jinxed the situation, but I was so confident that “this was it”, that I used those words with confidence.

Now don’t get me wrong, the last few weeks before our tentative discharge date were filled with mini hurdles and a todo list that was a mile long, but we didn’t let that stop us, and we hit the ground running. We both got our CPR done (Nick needed to get re-certified for work anyways, so it was like killing two birds with one stone), our trach training completed (trach changes, suctioning, bagging, etc), NG/food pump training, vendors in place (fun fact that I haven’t been too public with on Evanna's FB page or my IG account – but my Uncle actually owns a large oxygen vendor company here in Alberta… so lets just say that he has made sure we’ve been well taken care of and a great support to our family through this entire journey/process. It’s been surreal that a company I grew up with is now in my HOME keeping my child alive!), staff hired and trained. Our timeline of mid to late November was actually pushed UP to the beginning of November, and I was getting my birthday wish of having my daughter home! We began to get more and more freedom within the hospital (even taking Evanna on unaccompanied walks around the hospital was a big deal in the beginning) and we even began to plan day passes to take Evanna out of the hospital and have a few quick trips home.

Now it just wouldn’t be right if we didn’t experience any hiccups towards the end, even up until the last weekend in hospital, and we unfortunately had to put up a small fight and convince Evanna’s medical team that not only was Evanna ready to come home, but that Nick and I were more than capable of handling her and had the proper experience and knowledge to take care of her. In both the discharge meeting and several side conversations, it was reiterated several times to us that Evanna is one of the more complex cases that has come their way in recent years (complex heart + complex airway = complex mess), and her safety was super important to them. While we were grateful for their concerns, and that they truly cared for our daughter, Nick and I began to see the hospital as a detrimental place and was beginning to hinder her progress. The biggest issue we had was with certain people not responding to Evanna appropriately when she was upset. When a trach and vented baby desats, they have a certain protocol that they follow to bring that child out of that desat – however, Evanna being first and foremost a CARDIAC baby, those rules for the most part do not apply, and if anything, it can make her angrier, desat further and take a longer time to recover. They began to discuss these as “episodes” or “events”, but funny thing was they never happened when Nick or I were there, and it was because when something was making Evanna angry, we were there to catch it, deal with it quickly, and in the appropriate manner. Whenever Evanna is having a desat, Nick and I know exactly what to do and never make a big deal out of it (ie. tell the nurse or make the medical team aware) because like with many cardiac babies, the best way to handle it is to calm the child down and support them through the “event”. Anyways, it became this whole ordeal, and it was frustrating because we couldn’t be there all the time and handle Evanna’s “episodes”. **I would like to clarify that it sounds a lot worse than it really is. Evanna is just being like any other heart baby with a VSD – when she gets mad or angry, cries and doesn’t take nice deep breaths, her heart will shunt, which means her oxygenated and deoxygenated blood mixes more than usual, and the deoxygenated blood gets circulated throughout her body. Then you bring a stranger into the situation who doesn’t know Evanna’s likes and dislikes, and can make her even angrier, and therefore a longer and more severe desat. Overall, Evanna is just unique in that she has lower oxygen saturations to begin with, is hooked up to a monitor, and so when she’s angry, her numbers can freak people out. It’s hard for some people to wrap their head around the fact that when trying to get Evanna’s numbers to come back up, they can’t treat her like a respiratory baby (which you can PHYSICALLY see with her trach and vent), but must treat her like a cardiac baby (which you can’t really see on outside as it’s less obvious). At the end of the day, we knew it was time to get Evanna home, because the hospital wasn’t the safest place for her anymore, and that things were beginning to shift and our home would be a safer place for her under our watchful eyes of people who truly knew Evanna best.

Finally, on November 9, we packed up Evanna’s final belongings and walked out those hospital doors! Well, technically we made a stop in the PICU, as when we transferred out of the ICU back in August, they asked if we could stop by before we actually went home on discharge day. Evanna spent a total of 13 months in hospital, but 11 of those months was spent between the Stollery and ACH’s PICU’s, and so we had built some major relationships with the staff between those two units. The timing was actually quite perfect – Dr. Mahoney happened to be working! She was the intensivist who pretty much saved Evanna’s life on Canada Day when she went into Septic Shock, and both Nick and I felt that it was perfect that she got to be the one to see us off, and be the final “medical” person that we saw before we walked out of those doors.

So, what have we been up too since we’ve been home? Well for the most part we’ve been trying to just catch our breath, work out the kinks, find a system, and get into a grove. After a year of our life being put on hold, we’re just trying to regain some normalcy and pick up where we left off. So what does that mean? Well, I’m actually to returning to work after Christmas part-time, but made it so I only work around Nick’s schedule. We also bought and are in the process of building a new house! While the timing hasn’t been the best (the day we got a quicker discharge date for Evanna, happened to be the same day we put on a hold on the lot), but if we didn’t act when we did, we would have lost out on this particular opportunity. We’ve actually been looking for a new house since Evanna transferred back to Calgary at the end of June, and I was hoping to move before Evanna came home, but nothing we found was within our price range nor had what we were looking for. At one point did find a great property with potential, but it sold before we even got a chance to look at it and I was so bummed out, however, turns out that an even better house was waiting for us, and I saw that things were working out the way they’re suppose too. Anyways, we don’t get possession until late summer, so other than attending a few house appointments here and there (like picking out floors and cupboards), it’s not really on our radar, as we have other things that consuming our attention right now.

Ahh – feels so good to be caught up! I have a few blog posts planned (ie. Evanna’s New “Nursery” Reveal, Icing Smiles, etc), and a few blogging projects I wanted to get done, but I felt I couldn’t commit to anything until I was at least caught up here.

Thanks for reading, following along and keeping our little family in your thoughts and prayers!

xo The Irvine Family

Anniversary of October 28

This anniversary has slowly been creeping up, and it's been on my mind for several weeks now. Over the past year, we have experienced a few events where we almost lost Evanna and we thought that everything was over – the first time being this day one year ago.

You don't forget the phone call from the hospital at 1AM telling that your child is in Cardiac Arrest and the doctor needs you to come immediately. You don't forget that the person on the other end of the phone had to tell you that 3 times before your shocked (and tired) body processed the words that were being said. You don't forget that while it was probably only a minute, it felt like 10 minutes before you could pull yourself together, pick a dirty shirt off the floor and rush down to the parking garage. You don't forget how slow you thought the garage door was opening so you would have a decent cell signal to call your husband who was a city away to tell him what was happening. You don't forget that despite there being absolutely no traffic between the Ronald McDonald House and hospital, for some strange reason, you still obeyed traffic laws and even waited somewhat patiently at the red light despite the circumstance. You don't forget parking illegally in the emerg parking lot and running as fast as you can up to the PCICU. You don't forget bursting through the ICU doors and running around like corner like a mad women to find beds and equipment cleared out of the way and your child's bed surrounded by some 30 people. YOU DON'T FORGET seeing the intensivist you had just met for the first time earlier that day trying his best to intubate your precious baby, while the transport nurse was doing chest compressions. You don't forget staff's eyes staring at you in shock, and for one brief moment you weirdly wondered if they're judging your unkept and greasy hair. You don't forget thinking that this was it – all the tests, procedures and surgeries didn't matter, and your child was going to not make it. You don't forget the strange comfort you felt, like someone had pulled you into a warm embrace and being okay with the outcome, no matter what it was. You don't forget your child's nurse coming over with tears in her eyes to hold your hand and watch as they continued to work tirelessly on your child. Finally, after what seemed like an eternity, you don't forget the transport nurse yelling out loud "I HAVE A HEART BEAT, AND IT'S STRONG!"

So many details are etched into my brain from that night one year ago. I don't think about that day too often, because we've had a few other close calls since then, but those memories still exist nonetheless. It was one of our longest nights of my life, but I clung to every word Dr. Aditia said, and was given so much hope when the charge nurse came to update me stating how well her blood gases continued to improve every time they pulled a gas. It was the first time she went on ECMO Alert, but it was only a precaution. We still don't really know what caused Evanna to go into Cardiac Arrest, and it truly was unexpected. It was a long night for Nick as he was on shift when it all happened, but thankfully his boss let him leave immediately and he drove for an agonising 3 hours to be at his daughters bedside. The night honestly feels like a lifetime ago, and unfortunately just one of many close calls we've experienced with Evanna. Here we are, an entire year later – same "admission", but practically just days from finally being discharged and taking Evanna home.

The week following was an agonising one. We were still under the impression that transferring out of the ICU wasn't too far off in the future, and that hopefully this setback was just a minor one. Evanna did undergo another minor surgery a week later and we transferred back to  Calgary with high hopes for a successful extubation. 

I get comments all the time from people who say they "can't imagine such a long hospital admission", but in all honesty – it was those first few months that were the hardest and most agonising. Hospital life was still so fresh and new to us at the time, and we hadn't planned on it continuing on the way it did. However, as weeks and months continued to pass us by, it became our "new normal" and we kind of grew use to our new life. I am SO glad that this chapter is finally coming to an end – we still have an incredibly long ways to go in Evanna's recovery, but this will be such a huge leap!

xo The Irvine Family

Blog posts from that week:

October 28, 2014 
October 31, 2014
November 2, 2014
November 4, 2014

Our First UNACCOMPANIED Walk!

While I need to do an MAJOR blog update (which I’m working on!), today’s milestone definitely deserves a post of it’s own! Today, Nick and I were able to take Evanna off unit UNACCOMPANIED (meaning by ourselves without a nurse or Respiratory Therapist walking behind us) and enjoy our new found freedom. We got her ready in the stroller with all of her equipment, and once an RT checked it everything over, we were sent on our way. This is the first time that Nick and I have ever had alone time with our daughter since her first surgery last October outside a hospital room. Yes we had to stay within hospital walls, but this is one huge step towards going home! I’m hoping and will be pushing for a day pass in the next several weeks, and hopefully we can be discharged soon after.

This actually brings me to an incredibly important topic. The final hurdle that we must cross before bringing Evanna home will be getting homecare set up and having night nurses trained and in place. Now that we have a tentative discharge timeframe, we can finally hit the ground running and hire staff to watch Evanna at night. So if you live in Calgary and are a LOCAL FOLLOWER, we need your help spreading the word. I will be doing a more formal post on our IG and FB accounts with further details on Monday, but the faster we can secure and train people, the faster we can go home!

Anyways, for your viewing pleasure, here are some photos of todays walk!

We found a cow!

Evanna's Special Heart FAQ Video [Part 2]

FINALLY – after so many technical difficulties, I have finished editing the FAQ video [Part 2]!

I talk about why the multiple transfers between Edmonton & Calgary, our sleeping arrangements, and what our day looks like. Also, watch to find out what question causes me to get extremely emotional. I hope you all enjoy this second video answering all of your many questions!

xo The Irvine Family

Evanna's Special Heart FAQ Video [Part 1]

FAQ VIDEO is done! I’m not an expert at “vlogging”, so it took me a little longer to edit than anticipated, but I think I finally got the hang of it (lots of trial and error). I ended up splitting the video into 2 parts as it would have been way too long to post the whole thing (even with me splitting it, the first part is still over 30 minutes).

In this first part I talk a little about our history and how we’ve gotten to where we are, her heart, transplants, gtube and of course her trach and vent (why she has it, my thoughts and feelings on it and how long she’ll need it for). Hope you enjoy!

[Side Note: The video is not over 39 minutes long, I’m just waiting for YouTube to trim it down to 34:35] 

Life on Unit 2

Things are going great! We’re still on the floor, and haven’t had to go back to the PICU (something that I was afraid would happen within days of leaving the ICU). We have still experienced some ups and downs over the past few weeks, but Evanna has continued to make great progress and we’re just starting to enjoy life with our baby girl.

Our first week out of the PICU was plagued with IV and line issues. A few weeks after Evanna’s septic shock episode (July 1st), and getting a fungal infection in her PICC line, the Infectious Disease (ID) team and the PICU medical team decided to put Evanna on an extensive antibiotic and antifungal regimen for SIX WEEKS! Even though there are oral versions of the medication they had her on, IV medications work best and the ideal way of administrating them, so Evanna needed to continue to have IV access for this particular treatment plan. The problem was that after her second PICC line became infected and had to be taken out, putting in another one for just a few weeks didn’t make sense and so we decided to try and get away with just peripheral IV’s instead – however they’re less secure and can easily come out or stop working. The day we were transferred out of the PICU, we still had about 10 days to go before we were done with all of the antibiotics, and unfortunately because Evanna’s IV’s kept falling out or stopped working, baby girl was poked a lot (and it was a rare occasion that they got an IV or blood work on the very first poke too!). Let’s just say that it was a day of celebration when she got her last round of antibiotics and the line was pulled out (ps. lines are NEVER pulled out intentionally in the ICU, even if you’re not using them…however, up on the floor, they have no problems taking a line out if it’s not being used. Just another difference between ICU life vs unit life).

Our next problem was the withdrawal off Methadone. We had gotten Evanna down to just 0.1mg of Methadone every 24 hours for an entire week! That was a huge accomplishment, because it’s practically just a sniff! I felt that though Evanna may get a tad irritable when we discontinued the Methadone, she wouldn’t go into full out withdrawals – but boy was I wrong! Evanna got her last dose on Tuesday (August 25), and for the first few days, everything was great. Methadone has a very long “half-life”, so we knew that if we were going to see withdrawals, it would happen over the weekend. Well that Saturday Evanna began to get grumpy, and on Sunday (August 30) Evanna was withdrawing very badly – tachycardia, high temperature (high enough to warrant an order for blood cultures in case she actually had an infection), retching, gagging, thrashing around in her bed, etc. The pediatrician decided to start her on a low dose of Morphine, and while Monday wasn’t a great day either, Evanna began to improve and get back to her regular self. Overall it was an awful weekend, and I seriously can’t emphasize how horrible it is to watch your child experience withdrawals – let alone experience it again and again (since October, I have honestly lost count how many times we have weaned Evanna off of sedation medication which always sends her into withdrawals).

As of today, Evanna is only on .2mg of Morphine every 12 hours and we’re aiming to stop that either tomorrow or Friday. Morphine has an extremely short “half-life”, and so we don’t expect the same reaction off such a small amount.

The discontinuation of the Methadone happened around the same time that we discontinued her antibiotics and started her on the Morphine. This combination of events caused for some constipation issues, as antibiotics help the gut move along (even give you “the runs”), but Morphine is known to really slow things up, and so Evanna essentially got “backed up”. This was causing pressure on her stomach making her incredibly retchy and also tachycardiac. Once we realized what was happening, the pediatrician restarted her on some PEG (a type of laxative), and she soon began to improve after a few days. 

 

Okay, so I feel like I’ve only been talking about all the negatives, so let’s talk all the awesome things that have been happening! Obviously I mentioned that we are completely line free (technically she still has “tubs”, such as her NG & NJ feeding tubes, and her ventilator tube – but that’s a given), so for the first time since October, I have been given free range to put clothes on Evanna and dress her up in whatever I want. While it may seem boring, I have been more partial to sleepers at the moment, as while I’ve been able to put on some clothes on Evanna in the past – I could never put her in a sleeper. I may or may not have had a lots of fun shopping and gone slightly overboard lately on buying lots of new clothes for Evanna, but I do have a pretty awesome excuse….though Nick isn’t too fond of the bank statements at the moment lol.

With our new found stability and being on significantly less fluids when we discontinued with all the antibiotics, the cardiologist decided that Evanna needed some more calories (we also think Evanna got a little dry at one point which also explains her week of tachycardiness) and decided to order a slow increase of food to be given to Evanna.

Though it hasn’t been very consistent because of all our ups and downs, we are continuing to do lots of physical therapy with Evanna as she tolerates it. We obviously weren’t able to do much when Evanna was going through withdrawals, but she has been back to her regular self over the last several days, and so we have been able to do lots of exercises with her. Truthfully I would say Evanna is a good year behind of where she is suppose to be (completely expected given how long she was intubated and sedated for), but I know that with enough time and patience, Evanna will catch up. While we’re in hospital and when we go home, Evanna is closely followed by both Occupational and Physical Therapy (from my understanding, they'll be coming to our house at least once a week when we first go home) and work extremely hard with Evanna and what her needs are.

So what’s the next week or two going to look like? Well as soon as she’s off the Morphine we are going to finally transition Evanna back to NG feeds. We have to go extremely slow in the beginning so her stomach can get use to food again. Once that happens, we will be compressing those feeds and begin to actually give her some orally. Once we get up to a certain volume we can take her for a swallow assessment and continue to work towards complete oral feeding. With a trach and vent we know it’s not a guarantee, and that even a G-Tube is a possibility, but at the moment, both myself and our medical team want Evanna to declare herself and we all just want to wait and see what she’ll do.

Finally, in a few weeks at the end of September, we will be taking a PLANNED trip back to the PICU for a little sleepover. Evanna currently has a cuffed trach (the cuff kind of acts like a seal and doesn’t allow any of air that the vent is providing to escape around the trach tube), and it’s our biggest hurdle at the moment to being discharged. While we technically could go home with a cuffed trach, the respirologists here really don’t like having cuffed trachs “out in the community”. While I won’t go over the particulars of why that it, overall there are just more risks of having a cuffed trach at home vs a regular trach. At the moment, Evanna has a 3.5 cuffed trach, but she’s also a lot bigger than when we first trached her back in March. We are going to change her current out that trach for a 4.0 uncuffed trach and see if Evanna can tolerate a slightly bigger trach that’s uncuffed. So if you’re the praying type, while we appreciate prayers for overall health, transitioning Evanna to an uncuffed trach will be so wonderful and great, and can really get us on the path towards discharge.  

Earlier this week, we officially hit the 11 month mark of this hospital admission, and it’s slightly mind-blowing that we are so close to the one year mark. Never in my wildest dreams did I imagine that this would be our reality, but it will be and it’s kind of surreal. You read these stories and journeys of people who go through this situation (as you are right now), and I’m having a hard time believing that I am now a part of that “club”. You don’t ever think it’ll happen to you, but I’ve now learned that life is extremely unpredictable and anything can happen. I plan to write a completely separate post on all my thought and feelings as we hit that milestone, but I just want to thank everyone who has either followed our journey – either from the very beginning or just recently, for the incredible support, love and many prayers said on our family’s behalf.

xo The Irvine Family

PS. Thank you to everyone that submitted questions for the FAQ video. It was filmed it yesterday, and due to length, I decided to spilt it into two videos. I’m currently in the process of editing it, so hopefully I can get the first video posted sometime later this week. Stay tuned!