Saturday, December 31, 2016

|| a little Christmas miracle ||

Photo courtesy of Laramie Tracz Photography

Did December even happen? If it didn’t contain the biggest holiday of the year, it probably would have passed me by without even noticing. A few days after my last post, Evanna’s PICC line (what allowed us to be home while on IV antibiotics) clotted on us and so we had to bring her into clinic. They ended up inserting a PIV (peripheral IV – aka a basic IV) and decided to just admit us for the weekend until our transfer up to Edmonton on Tuesday (December 6) for surgery on December 8th…. which ended up getting bumped to a December 11th transfer (the same day my sister had another baby no less!) and surgery on the 12th. In between all of this, Nick and I quickly drove to Edmonton to attend the Stollery Foundation Gala that we’d been specially invited to attend – where we had a lot of fun and hope to attend in a few years when Evanna is older (as I know the foundation really wanted to see Evanna go).

Let’s just say that this particular admission resulted in several setbacks (not including that our surgery was originally slated for November 23rd), and was somewhat exhausting, as we tried to keep a busy little toddler entertained. Given our history, the admission was somewhat a “drop in the bucket”, but man oh man – it sure had its difficulties. Evanna’s improved overall health and stability actually caused several headaches, as not only our surgery but also the hospital transfers kept getting delayed due to more critical cases, and being smack in the middle of RSV season that magnified the situation. On the bright side (cause I’m a “silver-lining kind of gal”), the surgery itself went relatively well – and get this: we were only in ICU for 1 NIGHT!! Yuppers, considering the intensity that every OPEN HEART SURGERY is, this is just incredible and just shows you how far we’ve come. Evanna did lose a fair amount of blood postoperatively and they almost had to take her back to the theatre but it resolved on its own (it’s one of the risks I’ve talked about in regards to repetitive open heart surgeries). The recovery wasn’t the smoothest and it contained some heartache (ie. unable to remove her chest tube until postop day 7 and getting quite fluid overloaded), but once we were transferred back to Calgary, arrangements were quickly made to go home and we were discharged just in time for CHRISTMAS (which was completely unexpected)!

------------ Okay for documentation purposes (and save me a little time), I’m just going to copy and paste my social media updates from our December admission before moving on:

[December 2, 2016]

It's been an interesting 36 hrs to say the least.... so we had a dressing change on Wednesday that made our already "tough" PICC line nearly impossible to flush anymore. The HPTP/Infectious Disease clinic had us come into the hospital the following morning to assess and try a little TPA (aka a "clot buster"), but despite getting blood back, we still couldn't push stuff through after the first try. So they admitted Evanna last night to insert a PIV to continue with our antibiotic treatment and see if a longer run with TPA would help. Well today it was decided to just pull it (the line site doesn't look that great either), continue using the foot IV and NOT proceed with another PICC line placement. Because Evanna is being transferred to Edmonton on Tuesday for her open heart surgery on Thursday, they decided it was unnecessary to put Evanna under anesthetic twice within such a sort amount of time. Especially when they will be obtaining better access (ie. central line) WHILE she undergoes her surgery next week. So basically we are hanging out in the hospital for the weekend til Tuesday mornings admission.
This ACTUALLY somewhat works in our favour in a roundabout way. Months ago, Nick and I were invited to attend the Stollery Foundation Gala up in Edmonton on Monday night (a blacktie event for one of our favorite hospitals) and ran into logistical issues surrounding our hospital transfer when our initial surgery got bumped. Nick and I will now go up to Edmonton Monday afternoon, attend the gala Monday night, and meet Evanna with the transport team at the Stollery Tuesday morning (and we've arranged our personal nurses to be with Evanna all day Monday and aid in getting her ready here in Calgary Tuesday morning). Our cardiologist may or may not have laughed at the turn of events and how everything ended up working out, as this had been the topic of discussion for the past wk or so....

[December 7, 2016]

|| still in Calgary || I won't go into details right now, but I just got off the phone with the head of the Stollery PCICU (who also happens to be our primary intensivist) and made my concerns about this latest surgery bump well known (the one that was ORIGINALLY booked for November 23.....). There's a time and place for patience and grace, and then there are moments that call for the mama bear to come out and advocate for my medically fragile child [ NEW** surgery date is December 12th]

[December 11, 2016]

|| #edmontonbound || ..... finally. We are going by ground this time, but the team is so desperate to get Evanna up to Edmonton today, that at this point we don't care anymore (there were even talks of "discharging" Evanna, and Nick and I would quickly drive Evanna directly to the Stollery ourselves....but that's another story). Ohh, and my sister happens to be having a csection today, and LAST time she was in labour almost 2 years ago, Evanna ended up being emergently airlifted to the Stollery at the same time. Apparently Evanna likes to travel to Edmonton on the same day that she gets a new cousin. Our family may be slightly chuckling at this unique and weird coincidence of transfers and deliveries.
Prayers for a safe transfer to the Stollery

[December 12, 2016]

Evanna was taken back into the OR for her 4th open heart surgery earlier this morning -- making this her 10th surgery to date. She woke up super early and was literally bouncing around all happy as she rode down on the stretcher (which thoroughly entertained the operating room team). While this situation can somewhat feel routine to Nick and I, it honestly gets harder and harder to hand her over to the surgical team for a very invasive and major procedure. The risks become greater and greater everytime they have to "reopen" her, and I definitely found myself getting a lot more emotional and scared this morning then I usually allow myself too.

|| an update || I initially was going to do a full blog post, but I'll just do a quick update this evening and save the details for tomorrow. Evanna's open heart surgery went well and the switch out of valves went as planned. There was a lot of postoperative bleeding back in the PCICU, and they almost took her back to the OR to try and get a better handle on things. Thankfully things calmed down and the rest of the afternoon has been spent trying to keep Evanna nicely sedated (and if we're going to be honest here, definitely a typical Evanna problem lol). If history is any indicator, then I know we'll be in for a rough night -- so continued prayers would be greatly appreciated.

Ohh! And they also rolled Evanna out of the operating room on a "big girl" bed (not the hospital crib we're use too), and I don't know whether to be ecstatic at how far we've come or cry that our baby is no longer baby anymore #staylittleforever

[December 13, 2016]

|| postop day 2 || Evanna had a great night and only required a few additional PRN's (extra doses of sedation medication) to help with the pain. This morning they switched her from the hospital vent over to her trach and home ventilator (essentially what we consider extubation in our family lol). She's down to just one sedation infusion -- hydromorphine, which has also been significantly decreased, and hope to completely flip her over to Advil/Tylenol in the near future. Her central and arterial lines have both been removed and are aiming to have the pacing wires and chest tube out tomorrow (yesterday's blood loss is prompting the team to keep those in for one more day). This afternoon they started her on a little bit of formula/feeds and are hoping to transfer Evanna out of the PCICU and upstairs to the stepdown unit called "ICE" (Intermediate Care Environment) later tonight. Nick and I are somewhat unsure of what we think about this and can't believe how fast this is all happening, but the intensivists are ensuring us that Evanna is doing fantastic and this is "what's suppose to happen". >> that's right, our little girl who endured an almost 11 month ICU stay last year after her first open heart surgery, may make a break for it and transfer out of ICU in less than 48 hours! ------------------------------ This morning we received a very special + precious gift and I even cried while opening it. We got our hands on the new @themaddendelucafoundation monkey that represents one very special little boy who was also born with a special heart. An incredible foundation was created in his honor by his amazing parents, and it has provided so much support to other heart families and now funding some much needed research for congenital heart defects. Be sure to look them up!

[December 14, 2016]

|| postop day 3 || considering all the things we accomplished yesterday, we experienced quite the opposite today with an overall boring day. Evanna was transferred up to the floor last night and we're now in the "ICE room" until we're transferred back to Calgary. Evanna's drainage tube in her chest was still outputting too much blood, so the team decided to hold off another day before taking out her pacing wires and chest tube. This meant we could only decrease her hydromorphine infusion by a smidge, which meant she continued to sleep almost the entire day (which I know is a good thing for recovery purposes...just miss her happy bouncing personality). We've continued to increase her food intake via her GTube, and should be at full feeds by early tomorrow morning – then will see if she'll tolerant bolus feeding after that.
Current concerns is the lack of pee + poop, but we've introduced the regular tricks to hopefully move things along (diuretics and laxatives), and we're just hoping we'll see something in the next 12-48hrs. Infectious Disease is also heavily involved to talk about a long term plan moving forward. We will continue on IV ceftazidime and have replaced her oral Cipro (due to neurological side effects  that we were starting to experience prior to surgery) with tobramycin...which is also IV, both of which might be ordered for the next 4 wks – which means we could definitely see ourselves spending another Christmas in hospital – but we'll wait til we get back to Calgary before trying to sort that all out. This also means we need to insert another PICC line and they're trying to decide whether we should do that here in Edmonton, or wait til we're back in Calgary. At the moment Evanna's platelet count is low, so it's something they won't do anyways until they see some improvement.

[December 15, 2016]

|| postop day 4 || today Nick left and went back to Calgary – as he returns to work tomorrow morning. While we both welcome the little breaks and know it aids in keeping a healthy relationship (while also paying the bills lol), I still hate loosing my best sidekick during hospital admissions. To be honest – while I'm generally the one in charge of and good at advocating, dealing with the doctors and keeping all the medical stuff in order, Nick is better when it comes to being very attentive towards Evanna and caring for all her little needs. I can definitely take care of Evanna just fine on my own, but he's so much better with her, and their bond is so incredibly special.
Evanna's chest tube was still outputting too much blood and so we were again unable to take it out today, but we will continue to cross our fingers for tomorrow. We did however reach full feeds this morning and began to bolus feed throughout the day (vs continuous). We've also gotten a little poop + pee earlier this morning, which is a great sign that all her systems are returning to normal and hope we see more as the day unfolds (girl is so puffy). Her platelets have also improved, so they've put in a request for a PICC line insertion for tomorrow – but know there's a possibility that it might not happen til Monday. We're down to just one little IV (which was put in this morning) and so due to incapability with her antibiotics, had to switch her from IV hydromorphine to oral dilaudid – which so far seems to be tolerated just fine.
I want to thank Laramie (@laramietraczphotography) for stopping by yesterday to capture this very emotional moment. As you all know, documenting this journey through photos and words has become incredibly important to me over the past 3 years and has become my biggest outlet to process and cope with our situation.

[December 16, 2016]

|| postop day 5 || it's been a bit of a rollercoaster over the past 24hrs – but overall, Evanna is still doing "well". Things are happening somewhat at a snail's pace, and it's times like this that I miss the PCICU – which has the ability to make changes more frequently and at a much faster rate. I'm trying to remind myself that Evanna is doing fantastic when you take last year into consideration, but it doesn't make the situation much easier at the moment.
Evanna's chest tube is still putting out a lot of blood (well, technically it's "serosang") with no signs of slowing down, and so the earliest we think it can be removed won't be til at least Sunday (if not longer....). We believe the biggest culprit is how incredibly fluid overloaded Evanna currently is, and so one of the ways for all this fluid to kind of "escape" is through her chest tube (which to be fair, is much better than accumulating in her lungs). Evanna was also quite miserable all day yesterday and into the night (retching and rolling around the bed in some pain), so I had the cardiology resident paged and we came up with a new game plan around midnight. We flipped Evanna from oral to IV lasix (a diuretic) and gave her two suppositories yesterday. Basically we are trying to clear Evanna of poop and move fluid off of her as quickly as possible (though because we're not in ICU, they won't go as quick as this mama would like....). Since then, Evanna has had several bowel movements and 3 good diapers full of pee, so my anxiety level is dropping and I'm starting to calm down as she has been much more settled today.

On the plus side, they removed her pacing wires this morning and she got a PICC line just after 4pm, so I feel like we've still had a very productive day despite the chest tube delimma.
Prayers that we can continue to clear/dry Evanna out (though not too dry, as her heart requires a "fluid preload"), and the chest tube will slow down so the team can safely and successfully take it out.

[December 17, 2016]

|| postop day 6 || look who sat up for a few moments today -- chest tube and all (no smiles...but who could blame her)! Just like the meaning of her name, this girl is one heck of a "young fighter" – the meaning of Evanna's name, and continues to be so incredibly strong and brave. They did a few dressing changes this afternoon (sternal + PICC line), and the nurses couldn't believe how well behaved she was for a toddler – as she lied so patiently and perfectly still during the procedure. This little girl makes me so happy and I'm so proud to be her mom.

The chest tube is finally starting to slow down and output less surosang fluid, and so my fingers are crossed that we'll finally be able to take it out tomorrow. After that we can begin talking about a transfer back to Calgary and slowly work on a discharge plan (though, I'm not holding my breath for Christmas...)

[December 18, 2016]

|| postop day 7 || chest tube is finally OUT, and some much needed cuddles were accomplished today. We think Evanna is experiencing some slight withdrawals now that we've discontinued her hydromorphine, so it wasn't all fun and smiles this afternoon like we had hoped for (not to mention the endless linen changes). She's been throwing up all day – but we don't think it'll last long, being she was only on sedation drugs for less than a week.

The cardiologist on call this weekend happens to be one of our favorites here in Edmonton (doesn't hurt that her husband is one of our favorite intensivists too!), and she couldn't believe how amazing Evanna recovered after this surgery -- as she definitely remembers our last open heart surgery and the long hospital admission that followed suit. While assessing her, the cardiologist marveled at Evanna's very content nature and overall calm demeanor (not to mention how big she has gotten) and commended Nick and I on how well we've done as parents.

Talks of transfer are starting to happen, and the team has already been communicating with Calgary as we currently aim for Tuesday. We may not be discharged home by Christmas (due to the double IV antibiotic treatment course she'll be on until at least the 26th), but at least we'll be back in Calgary surrounded by family.
Thanks again to @laramietraczphotography for returning today to capture a few more moments of this admission. Can't wait to share the rest later!

[December 21, 2016]

|| taking a private jet at sunset -- talk about traveling in style || see you later Edmonton, it's been a slice! It's been a hectic few days, and it all started with our transfer back to Calgary. After finally securing a bed at the Alberta Children's Hospital, there was some confusion on how to actually transport Evanna there. It's protocol to always fly patients that are vented, but because she's very stable and the transport team was super busy with more critical patients (tis' the season), it was decided they wouldn't send us with a full crew. Well paramedics are not trained to operate in order for the transport to proceed – I had to accompany her, as I know my way around her Trilogy home vent. Nick was back in Calgary (and sick I might add), but thankfully my parents agreed to drive up to Edmonton that night and retrieve my vehicle for me. We're all settled on Unit 2 and planning our discharge.

Edit: I also wanted to add a cute little story. While getting unloaded from the ambulance at the Edmonton airport, one of the flight medics looked at me and asked "are you Nick Irvine's wife!?!" Turns out the flight paramedic used to work in Coronation where Nick was an EMT and is close friends with a very dear friend of ours!

[December 24, 2016]

Though we were suppose to be admitted until December 27, our awesome medical team pulled some special strings, and arrangements were made so we could be D I S C H A R G E D yesterday! We were fully committed to be in hospital through the holiday weekend – but on Thursday, the nurse practitioner came into our room and asked how we felt about going home early if it could be done. We immediately agreed, and plans were quickly put into motion (so though I didn’t talk about it in my last post, I can’t express how busy we've been trying to get all our ducks in a row in order to pull this off). Because Evanna is on TWO IV antibiotics for another 4 days, they’ve arranged for the HPTP homecare nurses to come out to our house every day and essentially do 2 line changes in order to properly administer the antibiotics she’s on (apparently she was the LAST child they added to the holiday weekend homecare list). Though we didn’t complain about being in hospital during Christmas, we are incredibly grateful that our medical team would go to great lengths to ensure we got to spend Christmas at home as a family (and away from all the icky viruses going around). So much to be grateful this holiday season.

------------------------------- DONE ------------------------------

**one tiny little and unique coincidence that I didn’t even notice until earlier this week (despite being written in my agenda that I hardly checked while we were admitted) was the day Evanna had her surgery (December 12), also happened to be the marker of “400 days” since our 400 day admission on November 9, 2015. A bittersweet moment for sure!

Though we were out of hospital and at HOME for the Christmas holidays, there was only a day or two of relaxation, as things were still quite busy with both personal and social plans (some of which I’ll reveal/talk about in my next post when I do a little 2016 review blog post… so stay tuned!). Just before discharge we were dealing with slightly lower oxygen saturations, but with a fabulous looking ECHO and blood gas (and no other symptoms), we went home and were told to just keep a closer eye on her (which we do anyways lol). Evanna is also on “sternal precautions” until January 23rd, which has been an interesting situation when you have a toddler who is heavier then she looks (a common statement we hear from nurses at the hospital lol) and still not mobile. Essentially we can’t lift her from under her armpits, but from underneath her bum like a newborn instead – so getting her in an out of her cherished exersaucer has been a work of art to say the least! We managed to salvage original Christmas plans with my family on the 24th, and replan things with Nick’s family on Thursday (Nick worked most of Christmas… so dinner had to be slightly delayed).

Evanna also had a mini cardiology checkup on Thursday (as we’re just over 2 wks postop, and like I already said, we’re all keeping a closer eye on her). She still has lower oxygen saturations, but Evanna’s iron level is lower than normal, so we believe that’s the reason – which is somewhat to be expected after a major surgery and considering the blood loss she also experienced. Evanna completed her IV antibiotic treatment coarse earlier this week and after seeing Evanna’s cardiologist, Nick took Evanna down to the Infectious Disease/HPTP clinic where they removed her PICC line! Our cardiologist is going to submit the cardiac cath paperwork in January, and we’re aiming to proceed with that procedure sometime at the beginning of February – but as we all know, it will happen when it happens lol.

Currently my agenda is starting to populate with all sorts of medical and therapy appointments over the next 6 weeks, but again, I’ll save those details for next weeks’ blog post. Nick and I have made some simple New Year’s plans this weekend followed by hosting a New Year’s Day brunch at our house the next morning (but I still hope to do an official “open house” party when feasible), and are happy to be slowly returning to “our normal”.

From our family to yours – we hope you all had a great Christmas holiday and all the best in the New Year!

xo The Irvine Family

Tuesday, November 29, 2016


This month has been one big holding pattern (what else is new?), and the planner in me is teetering on the restless end to say the least. Evanna’s open heart surgery (OHS) was originally booked for November 23rd (with a transfer via the ICU transport team occurring on Monday the 21st), but Nick and I both received several phone calls somewhat “last minute” the Friday before, alerting us that Evanna’s surgery was indeed going to be bumped. While the bump caused the obvious headaches (work, homecare arrangements and continued logistical issues with IV meds and cardiac monitoring), we actually were somewhat okay/not surprised by it and did what we normally do – continue to go with the flow. It was initially implied that the surgery would just be rescheduled for the following week but it actually got put off even longer than we had originally anticipated:


Apparently our surgeon did have some OR time before that date, but he is heading out of town for a few days, and did NOT want to do Evanna’s surgery just before going to the airport. That’s right – girlfriend has gotten herself quite the reputation, and so because of that, he wants to wait until he gets back before doing Evanna’s surgery so he’s around “just in case”. I still haven’t decided whether to chuckle, be thankful for the thoughtfulness/extra precautions, or annoyed at this whole scenario (a combination of all 3 perhaps?? lol), but it is what it is, and we’re already just over a week away from this date, so at this point it doesn’t really matter anymore. I know there is a small chance we could get bumped again, but we don’t think it will happen due to how much this is already being put off and a vegetation on Evanna’s valve was clearly seen (indicating her valve is definitely infected and needs to come out asap) on our ECHO last Friday.
We’re still making a few final tweaks in regards to the transfer piece, but that should hopefully be all cleared up by the end of the week (I may or may not be that annoying mom calling certain departments looking for some clarity as to a plan….)

----------------------- CALIFORNIA UPDATE -----------------------
[click HERE if you require a bit of a background information about our California referral]

So we finally got our first bit of news from California last week as our cardiologist received Dr. Hanley’s initial opinion on Evanna’s case. He sent a letter,  and in it he stated that Evanna’s case is definitely on the extremely difficult side (even for him), and isn’t sure if there is anything he will be able to do. HOWEVER, before making any final decisions, he requires a new cardiac cath to see if there is anything he can rehabilitate (even within lung tissue). So what does that mean for us? WELL, essentially we are in for a very busy few months, and our upcoming OHS is creating even more logistical problems then we had ever anticipated. Basically we are still going to proceed with going up to Edmonton next week and replacing Evanna’s valve as originally planned (as Dr. Hanley agreed that we need to deal with this endocarditis before he will even touch her). We then will probably transfer back down to Calgary once she’s stable enough, and complete the regular “six week recovery” timeline (which puts us around mid-January). Then we will go BACK up to Edmonton (which I’m assuming another ICU transfer will have to be arranged) and do a cardiac cath and send those results down to Dr. Hanley for him to review. Oh, and did I mention that we’re also trying to book a bronchoscopy here at ACH (Alberta Children’s Hospital) around the same time to see if Evanna’s increased strength has finally reflected in her airway and make some vent weans? Oi.

Overall, while I wish we were given a clearer answer, we (our cardiologist included) were not surprised with what written in Dr. Hanley’s letter, and somewhat already knew what was going to be said (ie. requesting a new cath…we just didn’t want to put Evanna under this very invasive procedure without a really good reason).

So that’s where things currently stand and all I have in regards to updates.

Disclaimer: I know a LOT of heart/medical moms follow my blog and Evanna’s journey, and have been sent several messages (with only the best intentions) over the past year with suggestions about other places we could/should seek opinions from. I’m well aware of the fantastic cardiac programs at BCH, CHOP and Texas (do you know how many facebook heart mom support groups I’m apart of?? lol), and the incredibly high rankings they boast in the USA as “centers of excellence” for pediatric cardiovascular surgeries/programs and the absolutely amazing things they do. However, we are not going for the hospital but the SURGEON. Our healthcare system sends children from Canada to many different facilities all over the USA depending on the nature of condition, including the centers I just listed and more. Evanna has a very unique and rare congenital heart defect, and the surgeon that specializes in Evanna’s particular CHD is Dr. Hanley. He pioneered the “unifocialization” (the initial surgery Evanna had back in 2014), and performs surgeries on children almost identical to Evanna on practically a WEEKLY basis (one MAPCA mom overheard the CVICU nurses call it “unifoc Wednesdays”), and one of our cardiologists here stated “imagine half an ICU of just MAPCA kids – because that’s what it’s like”. He is the best of the best at what he does (even considered a “last resort” for many CHD cases), and it’s why our medical team here (our own world renowned/first class cardiac surgeon included) has approved this referral, because they know that if Evanna has a chance whatsoever – Dr. Hanley will provide it. Unlike any other pediatric cardiovascular surgeon, he is known for actually going into lung tissue to rehabilitate collaterals (which is what we’re somewhat hoping he can do for Evanna), and he gets sent cases from both around the USA and world (ie. China for example) to perform surgery on. I’ve stated it in past blog posts, but I’ll say it again: according to pediatric cardiovascular literature (and bluntly said to me by our surgeons team) – MAPCA’s is considered the MOST difficult CHD to manage surgically (don’t believe me? Read this article HERE where it’s stated right in the first paragraph). Please, please trust that Nick and I will always continue to advocate for Evanna as we always have, and will leave no stone unturned for our daughter, however, our options are limited and that’s just the reality. St. Louis -- the children’s hospital that is considered the “center of excellence” in the WORLD for pediatric heart/lung transplants has also recently released an article that “collateral dependent” children (ie. MAPCA kids who do not have native pulmonary arteries, and rely solely on collaterals for pulmonary blood flow like Evanna) will no longer be considered for heart/lung transplants due to devastating results (to avoid getting too graphic, basically they have not had one patient live longer than 6 weeks postop due to horrific complications). SO, as you can see, both myself and our medical team have exhausted every option and avenue, and while modern medicine has come a long way, it unfortunately still has its limitations today (which is why CHD research remains so important). Dr. Hanley is the “MAPCA guy” in the CHD surgeon world (which isn’t that big btw), and if anyone can help improve Evanna’s prognosis and quality of life – it will be him. It’s been stated by both cardiologists and parents that he likes a challenge, but I am also personally aware of cases that he has had to turn down too (essentially he NEEDS something to work with just like any other surgeon at other hospitals would too), and at the end of the day we have to consider what’s best for Evanna and how much more we put her through too.  
As always, thank you for your continued love, understanding, concern and support.

xo The Irvine Family

Wednesday, November 9, 2016

|| first HOMEVERSARY ||

In all honesty, this particular anniversary came up a little fast, and slightly out of nowhere for me (though we've been a little busy lately, with a LOT going on right now). This date has been written in my agenda for a few months now, but I still almost overlooked this particular anniversary and even almost forgot about it until just last night.

[NOVEMBER 9, 2015]

One of the greatest days for our family – after 400 days of so many ups and downs, and setback after setback -- we finally got to bring our baby girl home! Sometimes when I look back at those first few months home, I can’t believe we actually survived those very critical and somewhat unstable days (I get neasous just thinking about our first few trips out of the house). Even though Evanna was stable enough to come home, she was still quite sick and fragile. I often talked about how at one point she was too well to be in hospital (and it even was starting to become detrimental and somewhat dangerous), but she almost was not quite healthy enough to be home….however -- we did it nonetheless! Today Evanna is absolutely thriving at home, and has grown and developed SO MUCH over the past year. In fact, during our admission last month, I ended up having a great conversation with one of the Respirologists about how well Evanna has done since going home last November. This particular Respirologist admitted that she was one of the doctors who didn't think Evanna should be discharge last November and would  just end up readmitted in a matter of days (in all fairness, Evanna is one of their most complicated cases they've seen come through their hospital doors and had built herself a little "reputation" to say the we had a number of doctors somewhat try and delay us from taking her home that day). The Respirologist then told me that she is quite happy to see how wrong she was, and was just absolutely thrilled at how well Evanna has done under our care at home (and yes, I will take that has a little "head pat" for all its worth).

--------- comparison between November 2015 + November 2016 ---------

Monday, November 7, 2016

|| housebound ||

This blog post was originally posted on Milk + Confetti. Check out the site for more mom related stories and advice.

photos by Guenard Photography

It’s my husbands second night shift of his regular 4-day work tour, which means I’m alone in bed trying to fall asleep. I can clearly hear my daughter’s home ventilator from down the hallway, and I just lie awake staring at the bedroom ceiling listening to the sound of her breathing. Tears are streaming down my face – but I stay exactly where I am as I don’t want to embarrass myself in front of the homecare nurse, nor wake my daughter up just so I can cuddle her to make myself feel better. Not since the eve of her tracheostomy surgery has body filled with this intense anger, and ask the myself the ever popular question -- “why us?”
Just a few hours earlier I had put daughter Evanna to bed, but while disconnecting her from the living room ventilator to carry her up the stairs to her bedroom vent (like we do every night) – something was triggered, and I felt this overwhelming sense of being a prisoner in my own home.

It had been an abnormal week where I only worked one day out of the house nor had any medical appointments booked, so “cabin fever” was raging its ugly head. Though I thoroughly enjoy the odd lazy day at home with nothing to do but binge on Netflix and play with my daughter – the social butterfly in me likes to get out often and enjoy life whenever I can. I’ve been able to keep myself heavily distracted the last few months with lots of personal plans, but “family fun” pictures posted by Facebook and Instagram friends have been flooding my newsfeeds, and they’ve been little sharp reminders of our current, but severe limitations.
When I use to picture what our family life would be like when my husband and I talked about having kids, I envisioned trips to the local pool, summer fun at splash pads, fun little weekend getaways in the mountains, and the casual outing to ice cream shops while exploring downtown – things considered everyday normal occurrences for the average family.  I couldn’t wait to receive our invitation to local mom + baby playdates and build some bonds with other mamas as we compare notes and share tips with one another. I never imagined that something so simple would be significantly impacted by the shear fact that it takes no less than TWO people to pack our daughter up, walk out of the house and load her into our vehicle.

EVERY . SINGLE . MOMENT. that our daughter spends outside our home is measured in battery life of our home ventilator + suction machine – if we have access to electrical outlet, and how many oxygen tanks we need to pack. On average, we currently go through a LARGE portable oxygen tank within 3-4 hours, and for safety purposes we always pack an extra 2 tanks in our trunk for emergency purposes only (ie. car accidently breaking down, get stuck in traffic, etc). So a simple afternoon out of the house means we are packing a total 4-5 large oxygen tanks, along with the rest of our medical equipment into our little SUV in order to keep our child alive and healthy. This doesn’t include our emergency trach kit, an emergency bagger in the very unlikely chance we experience mechanical failure of the vent, feeding pump and formula (which she receives every 4 hours), soothers, regular toddler toys and the almighty tablet (which we somewhat consider medically necessary, as it’s a tool we can use to calm our daughter down and bring her out of an oxygen desaturation).

I distinctly remember learning about the term “quality of life” in high school, but never did I expect to actually experience a reality where obtaining it was something we would have to work really hard at to achieve. While our quality of life has indeed improved since our year long hospital admission, our life is still greatly controlled by life saving machines and the restrictions they place on even the most mundane tasks. There are moments that terms like “house bound” and “house arrest” feel so very real, and I have absolutely felt trapped by our very situation. I often mourn the idea that we could never go on a family vacation due to oxygen alone, and an entire day trip would mean packing a minimum 10 large oxygen tanks.

I’ve experienced countless moments where I wonder if and when this situation will one day actually impact my medically complex child, and worry about it on a consistent basis. The months continue to pass us by, and things have continued to remain unchanged – so my anxiety about it and her quality of life continues to build. Right now she is still so blissfully unaware of everything and is the happiest little girl I know…. I just pray that we can either get to a point that we can either sprint off the home ventilator or wean off oxygen before she realizes these intense limitations she has just in order to LIVE and breathe on a daily basis.

Something will eventually give. I guess I’m just afraid of what that “something” will be. The possibilities range from finally able to make decreases and sprinting off the ventilator, weaning oxygen, to even her walking (meaning I can easily carry her vent and oxygen by myself and no longer require having to count on someone just so we can venture outside our home) – to the complete opposite of Evanna getting increasingly sick and we lose her. It overwhelmingly angers me that with the reality of her terminal prognoses, we currently can’t “live life to the fullest”, and emotions like guilt + sadness live like a large lump in my throat more often than I would like. I grow both impatient but increasingly afraid of the future. I want to press both the “fast forward” and “pause” button at the same time, and just wish someone could prepare me for what’s to come – a crystal ball would be really nice right about now.

I know – motherhood isn’t easy, but this particular “season” has been very hard to say the least, and I earnestly hope that we will be blessed moving forward and strengthened by everything we’ve had to endure. Our limitations and hardships are beyond exhausting (both emotionally + mentally), and I both crave and yearn for the normalcy that everyone around me gets to live. For the most part, we carry on day-to-day without giving it too much thought, but the days I do ponder about it, it comes at me like a bag of bricks and breaks me down a little. All I can do is try and pick up the pieces, glue myself back together and be the best mother I can be to the most deserving girl in the world – my daughter. I won’t give up and we will continue to press forward to the best of our ability as we’ve always done before.

xo The Irvine Family

Thursday, November 3, 2016

|| halloween + cardiac clinic ||

Man oh man, I don’t know if I like this whole “waiting around for a surgery date” business – especially when it involves a trip to up to the Stollery Children’s’ Hospital for open heart surgery. Excluding Evanna’s very FIRST open heart surgery (okay okay …and the GTube surgery), we haven’t had to wait for “that phone call” in a very long time. Normally (for us), it generally goes along the lines of “Evanna needs surgery”, is immediately flown up to Edmonton, and has surgery the next day. Instead of just a few moments notice, a couple of hours to pack, and hastily making several phone calls to family, homecare nurses, work, and the Ronald McDonald, we now have a handful of weeks to do all of that…. and I’m not sure if I like it. We had a check-in with our Cardiologist (more on that a bit later), and she chuckled at my remarks and stated “this is how it’s suppose to be!”.

So Monday was Halloween. At one point I was 100% sure that we’d still be in hospital, but the stars aligned and we managed to get discharged just a few days before – meaning for the first time, we got to celebrate our FIRST Halloween HOME! I originally didn’t have plans to actually take Evanna out, but my mom called me on Sunday night and said they were coming over with my sister, niece + nephew…. which meant I had to figure out some logistics on how I was going to make the whole thing work (ie. both Evanna’s original and newly acquired medical equipment). Well I just happened to purchase a wagon for Evanna (it's suppose to be a Christmas present -- oh well), so I decided there was no harm in breaking it out a little early for a good cause.
It’s quite common for it to snow by Halloween here in Calgary (think snowsuits under Halloween costumes), but thankfully we had decent weather – warm enough that just a few layers were required. I was sure the wagon I purchased was on the larger end, but apparently Evanna’s “stuff” proved otherwise. I was able to get her emergency trach kit, suction machine, IV pump bag, and her ventilator in the wagon with Evanna, but I still had to pull out the oxygen tank carrier. We made it to about 7-8 houses before Evanna was DONE, but we still did it nonetheless, and we achieved this little milestone!

On Tuesday we had a quick appointment with our Cardiologist. The ECHO + ECG was done first (with a few compliments on Evanna’s excellent behavior), before proceeding to meet with Dr. Fruitman. Overall we’re just keeping a close eye on her prosthetic devices for any vegetation growth (which would prompt an immediate surgery), and our Cardiologist was just ecstatic with how great Evanna was looking. She has since reported Evanna’s status to our surgeon, and now we're just waiting for that phone call with a surgery date (again, aiming for the end of November). Plans are in the works with Edmonton and Calgary’s ICU’s in regards to transport, and we’re just trying to enjoy these last few weeks at home as best we can.

xo The Irvine Family

Saturday, October 29, 2016

HPTP Training + 4th Open Heart Surgery

"Little Warrior" Shirt c/o Jacob .Grace Designs

As medical parents, I legitimately feel like “we’ve done it all”. Okay, so I know that isn’t quite true, but going home with a GTube, trach, home ventilator, oxygen and IV therapy…. you can’t fault me for feeling that way. I didn’t think we could get anymore attached or tethered then we already are while at home – but guess I’ve learned that it’s still possible (however, I would like to boldly clarify that the trach/vent will remain as the most critical, intense and complicated of it all…it’s an airway after all). After cardiac conference this past Tuesday (which I’ll get to in a moment), we were officially given the green light to initiate the Home Parenteral Therapy Program (HPTP) and work towards discharge. A nurse from the Infectious Disease (ID) clinic came and met with me on Wednesday (October 26) to go over the basics and set up the timing and training of it all, but I’ll admit that I was a little surprised by a few small logistics. I guess the biggest surprise is the fact that though Evanna only gets ceftazidime three times a day, she is hooked up to the home IV pump 24/7 (we only disconnect her to change out IV bags once every 24 hours). I plan to post the mechanics of it sometime later next week, but basically even though Evanna essentially gets 3 doses of ceftazidime every 8 hours in the form of a “bolus” through her PICC line, to help avoid unnecessary disconnects while at home, the pump continues to deliver a very small amount (I believe it’s 2mLs/hr) in between each bolus. Talk about a small “pain in butt” -- though I’m still incredibly grateful that this is an option that we are able to utilize and allow us to take Evanna home – even if it’s just for a little while.  
On Thursday (October 27), Nick and I met with the ID nurse down in clinic where we spent almost 2 hours going over how to work the IV home pump and change the bag IV bag once a day. I had to chuckle because even though the nurse was showing us “best practice” that is taught to parents – Nick obviously did a few things “his way” due to his profession as a Paramedic (which the nurse didn’t mind at all).
Yesterday afternoon Evanna was hooked up to the home IV pump, and we were finally allowed to take her home. The homecare team came out this afternoon to walk us through our first bag change around 3pm, and will come again tomorrow. They will come again once more on Monday as they have to come every THREE DAYS while we’re home to prime and attach a new line regardless, but we should be good to go from there on out. I’m most nervous about Tuesday, as we have a follow-up appointment with Cardiology around the same time we have a “bag change” ….so that’ll be interesting to try and handle in the middle of an appointment (thankfully I’ll have one of our night nurses with me to help if needed).

OKAY…onto cardiac conference. Though it’s already been 4 days since Dr. Fruitman (our primary Cardiologist) came and explained the situation, I’m still trying to wrap my head around it all. It was decided by the Stollery surgical team that we do in fact need to transfer Evanna back up to Edmonton in the very near future and replace her hardware/prosthetic material (BOTH the conduit + valve). This is both because of the type of infection we are dealing with, and how long it took to clear from her blood stream. From an infectious disease perspective, Pseudomonas is an incredibly scary bug to have within your bloodstream. It’s not one easily cleared from the blood, and while it’s hard to see from diagnostic imaging, it more often then not likes to create an impenetrable “biofilm” around foreign material (ie. heart prosthetics). While every open heart surgery comes with an enormous amount of risks – the fact that have 4+ negative blood cultures makes them all breathe a little easier and not as hesitant to proceed with this plan of another OPEN HEART SURGERY -- Evanna’s 4th to be exact. We however have to wait until the end of November due to the rhinovirus/enterovirus (cold) that we experienced last week (the sole reason why we ended up in PICU) before the surgical team can proceed going back into Evanna’s chest.
This means that yes, though we are HOME from hospital – it’s only temporary (*cue tears*) for just a few weeks. We don’t quite have a date, but I’m assuming it will be sometime after November 17th, as that’s about 1 month from the positive viral swab we took in October -- but we will hopefully know more after Tuesday when we see our Cardiologist for follow-up. While it hasn’t been confirmed, I’m also 99% sure that we initially will have to admit Evanna down here at the Alberta Children’s Hospital so she can be medically transferred up to the Stollery Children’s Hospital due to all of her medical equipment (trach, ventilator, oxygen, etc), and I anticipate that we will be in Edmonton/at the Stollery for 1-2 weeks before transferring back down to ACH to continue Evanna’s recovery (this timeline is complete guess based off our own personal experience).

------------------that’s not all------------------

Our HPTP journey won’t quite end after this next open heart surgery either – Evanna will have to complete another 4-week antibiotic course post surgery, and so if we experience a decently quick recovery, we will once again come home with HPTP.
While the details are all a little fuzzy, the cardiology team has also decided that it’s time to do another cardiac cath, as Evanna hasn’t had one since May 2015. I doubt they will do it before Evanna’s open heart surgery, but I’m not sure if it’s something they’ll do right after or have us come back up to Edmonton at a later date to complete. Cardiac caths on Evanna are a bit more complicated, as the routes they normally take are clotted, and so they have to go through her liver instead (which is a bit more risky). One of the main reasons they want to do another cardiac cath is to accurately measure the pressures in Evanna’s heart and send those results to Dr. Hanley in California….. which brings me to here: we have ALL of this going on over the next 4-8 weeks, and we still potently have California on the table. Oi

>> you may be wondering that if we're still waiting to hear from Dr. Hanley, why not just wait and possibly hold off on going back up to Edmonton/Stollery and avoid an "extra" open heart surgery, when Dr. Hanley could potentiality replace her prosthetic material and work on her collaterals at the same time? Well, now that Evanna is much more stable compared to 1.5 weeks ago, the surgical team believes the risks of going back into Evanna's chest have come down greatly and if and when we do hear from Dr. Hanley, we could be looking at several months before we could secure a surgery date anyways (he tends to book months and months in advance). It's better that we completely take care of this infection now and get Evanna in "tip top" shape before we potentially send her down to California --hope that makes sense to you. 

By now Nick and I are somewhat use to going with the flow and the odd curveball when it comes to Evanna…. but to say we’re currently a little overwhelmed at the moment would be a slight understatement to say the least. I’m trying to just focus on the current steps directly in front of us (home on HPTP and transfer back up to Edmonton), but I’m a little in disbelief when I think about all what has recently transpired, and everything that’s coming our way within the next 2-6 months.

Just a current glance of “our plate” right now:
– Trached child who is ventilated and on 4L of oxygen 24/7
– GTube feed every 4 hours (0200, 0600, 1000, 1400, 1800 + 2200)
– Manage IV therapy which involves changing and hanging a new bag every 24 hours (and know that this will be something we will have to deal with for at least the next 8-12 wks depending on the timing of everything…)
– Facilitating a HPTP homecare visit every 3 days so they can prime and attach a new line
– Continued juggling of our unique work schedules (full time shift rotation for Nick and casual/part time for me)
– Prepare for another hospital transfer and admission up to Edmonton for open heart surgery (though, at least we have a few weeks to prepare vs a few hours that we’re somewhat use too lol). This includes packing, arranging hotel/Ronald McDonald House, booking off work, informing and canceling any ongoing therapy appointments, etc
– Evanna’s very first dentist appointment (at the hospital) on Monday
– Check-up & ECHO with Cardiology on Tuesday
– Complex Airway Clinic & Infectious Disease blood work appointments within the next few weeks
– Quick personal trip/vacation to Seattle in less than 2 weeks with a friend (not that I’m at all complaining about this) that I hope to still attend and still have to make plans for (welcoming all ideas!)
– RSV shots every 28 days starting at the end of November (so happy that Evanna was approved for yet another year of RSV protection!)
– Resume physical therapy as much as possible before having to press “pause” once again for 4-6wks after Evanna’s OHS (ugh…this one hurts a little as I can’t emphasize just how far behind Evanna already is, and she’s soo darn stubborn when it comes to PT activities to begin with)
– Continue to stay on top of our night nurses schedules (my job), their paychecks (Nick’s job), and make appropriate arrangements with them once we get an Edmonton date.
– Squeeze in an immunology follow-up appointment when we find time (they’ve already called to schedule an appointment, but I had to ask them if I could call them back once we had a better idea of how our December/January will look like).
– Schedule a swallowing test with ENT asap
– Advocate for and book a new bronchoscopy with Respirology + ENT after the holidays

So this is where we currently stand, and we still are missing a few pieces of key information that I hope to gain over the next few weeks. We're so glad that Evanna is completely back to her baseline and at home with us -- even if it's just for a short while. Nick and I could definitely tell she was getting a little bored the past few days before discharge, but as you can see -- she is very happy to be home. Continued prayers + good thoughts would be greatly apprecitated at this time, and I'll update one I know more on both Edmonton and California. 

xo The Irvine Home

Sunday, October 23, 2016


I get a little anxious when I get behind on my blog, and though I’ve certainly gone longer between updates, so much has happened that past two (almost three) weeks…. with no signs of slowing down. Despite my Instagram or our Facebook page for the intermediate updates, this platform continues to be my singular place to document and journal everything. This continues to be a huge personal outlet for me, and it honestly does provide a bit of relief when I’m able to organize my thoughts and write them out.

At the beginning of October, Evanna began to exhibit some symptoms that she was coming down with something. We held out for a day or two in hopes to avoid a hospital admission -- as we have been given the tools to deal with minor illnesses at home – unfortunately, Evanna continued to deteriorate and we decided to pack her up and take her into emergency (October 5). Cardiology had alerted the ER of a potential visit, as we kept in contact with them from the moment Evanna became ill at home – and so along with her long list of diagnoses, we were immediately taken to the back and seen by the emergency physician without having to wait.
After being assessed by the pediatrician, we were then assessed by one of the ICU intensivists for a possible ICU admission (protocol with most trach/vent kids). We of course knew the intensivist very well from last year, but we all agreed that clinically Evanna was “well”, and an ICU admission was unnecessary at this point of time, and we could proceed with going up to Unit 2. However, the “trach+ vent hallway” on Unit 2 was full…. so we ended up being admitted to ICU anyways (such is life).

Within 12 hours of coming into hospital, Evanna’s clinical picture actually improved dramatically, and we began talking about discharge from the ICU and continue to support Evanna at home. However, the night before we intended to leave, her labs came back from the blood draw that we did in emergency, and they were positive for an infection (pseudomonas). They immediately started her on some antibiotics and we knew right away that we weren’t going anywhere fast.
The following morning (October 7) a bed up on Unit 2 opened up, and so because Evanna was stable, we transferred up to the floor and settled right in, knowing that without a doubt we’d be in for Thanksgiving (marking the only holiday to date that Evanna has spent each year consecutively in hospital… though we’re cutting it close and will most likely see that same milestone for Halloween too).
The first week or so was spent hanging out, talking to our regular specialists of the clinics we’re associated with (cardiology & respirology), and waiting for the infection to clear so we could proceed with a PICC line (a more stable IV line to administer the antibiotics through) that would allow us to go home. At one point another bumpbegan to grow at the top of Evanna’s sternotomy and directly beneath her tracheostomy site, which had Cardiology and Infectious Disease freaking out and when we starting talking and communicating with Edmonton to keep them in the loop in case we had to transfer back up for another debridement surgery.

One of the biggest highlights from our first week in hospital was having a few good in-depth conversations with one of our trach respirologists about some major concerns I have about our “trach journey” and what I would like to see happen over the next year. Last month we had a “combined clinic” appointment with our respiratory and ENT teams, and I walked out quite disappointed and defeated with how it all went. Essentially I felt we got a “it is what it is” type answer for working towards weaning Evanna off the vent over the next year and the severity of our situation is not being taking seriously. After talking to the trach Respirologist, I was able to better convey some issues and concerns we had, and come up with a more concrete plan to book another bronchoscopy soon and to keep some additional options on the table should things remain the same by next summer. We also saw cardiology lots throughout the week as we are dealing with an Endocarditis diagnosis, and so they’re keeping a close eye on everything and keeping the communication lines open with Edmonton, but for the most part we wanted to see if we can clear things with antibiotics alone, as a debridement or even another open heart surgery would be a very big deal and pretty invasive.

About halfway through the second week, we noticed Evanna was getting a runny nose and concluded she had indeed caught a cold while in hospital. For the first several days it didn’t seem to cause any additional problems, but by day 5 (October 17) we began to experience issues with trying to maintain appropriate oxygen saturations. After hours of consistently bumping up her oxygen (to 10-12L) and administrating Ventilon every 2 hours (this helps treat wheezing and open the airways up), the unit called on the ICU to come assess Evanna and decide if we should transfer back down the ICU. Well, due to the fact that Evanna was surpassing the floor’s threshold and capabilities, they ended up just sending their transport team up to help pack us up and bring her back down to the ICU, as it was better to deal with this in a calmer state, than for things to progressively get worse and be rushed.

Down in the ICU they kept Evanna on 12L of oxygen, bumped her ventilator PEEP from 12 up to 14 and started her on a continuous Ventolin drip (it was hooked into the vent’s humidifier so that it could be pumped in through her vent tubing directly into her airway). By the next morning Evanna started to improve and we were able to decrease the amount of oxygen she was on. Unfortunately we learned that we got yet another positive blood culture that started to really worry the whole medical team, as it had been over 2 weeks since starting Evanna on IV antibiotics. On Wednesday (October 19) one of the cardiologists that is helping us send down a referral to California (there are two cardiologists helping us with our referral – Dr. Fruitman, our primary cardiologist and Dr. Rutledge because of our history and relationship with her up in Edmonton) to Dr. Hanley for other open heart surgery, came in and explained the current situation and how this infection is starting to become extremely worrisome and could potentially interfere with our entire California plan. Infectious Disease feels it’s time we transfer up to Edmonton for surgical intervention to switch out her conduit that they are certain is now “seeded” with Pseudomonas. While the IV antibiotics are somewhat clearing her blood, they think the conduit continues to “reinfect” everything. The problem with that, is it’s “easier said than done”, especially when we’re pursuing a different/another open heart surgery down in California by Dr. Hanley. So Dr. Rutledge informed us that they rushed the referral down to California that evening and have asked for an expedited answer so we can better plan on how to proceed over the next few weeks.

On Thursday (October 20), Infectious Disease and Cardiology decided to have a meeting, as they continue to somewhat disagree on what needs to happen. I was working, so Nick attended it by himself -- as we are continuing to try and work around each other’s work schedules so that one of us is always at the hospital with Evanna. Basically, Infectious Disease reiterated that Evanna needs surgical intervention, however Cardiology is saying that going back to Edmonton to change out the conduit is more complicated than it sounds. We are hoping to hear from California in the next week or so and essentially wait to transfer Evanna down there to have the open heart surgery we want to do and change out the conduit at the same time. However, in the same breath, the cardiologist made it known that she honestly thinks Evanna’s case is somewhat beyond Dr. Hanley’s capabilities and believes he will tell us that there’s nothing more he can do. If so, while our next option would be to go to Edmonton to change out the conduit, the cardiologist asked that we consider our options very carefully and weigh out how much we want to continue to put Evanna through, as again, another open heart surgery to change out her conduit is much more complicated than it sounds, and they really worry about how she’d do from a recovery standpoint.  


Nick and I have been through this before, and if anything, it just continues to get harder to talk about the older Evanna gets. We’re absolutely stunned that we are having to talk about this again so quickly, and it truly leaves you breathless.

So where are we now? Well they did a CT on Thursday to both assess the bump at the top of her sternotomy and have a fresher angiogram to send down to Dr. Hanley (which was immediately sent by FedEx). The good news is the bump continues to improve and I guess it’s a good thing to have fresh imaging for Dr. Hanley to base his decision on.
We finally got a PICC line yesterday morning as we’re running out of IV sites (which went well) and we’re somewhat in a very nerve-wracking “holding pattern”, as we wait to hear from both California and Edmonton with their opinions. As of today, we have finally gotten THREE NEGATIVE BLOOD CULTURES in a row, which is allowing us to all breath a little sigh of relief and feel a little less rushed with our decision making. Evanna has also back to her “baseline” from a respiratory standpoint (down to 4L of oxygen, etch) since catching this cold and so we transferred out of the PICU and back up to Unit 2 this afternoon.
Tomorrow is Monday, which means we’re in for a very busy day with hopefully trying to come up with a discharge plan. Yes, we have a PICC line, but Evanna is still on TWO antibiotics, and they generally don’t let you do Home Parenteral Therapy Program (HPTP) on more than one IV drug. I’m honestly hoping we can come up with some sort of compromise as the longer we’re in hospital, the chances of Evanna catching another cold increases – especially this time of year. Our most acute issue right now is Evanna has gotten a little “backed up” with poop this past week and is incredibly uncomfortable. We’ve been working on clearing her out the past few days (yeah laxatives), but we still have a little ways to go based on her grumpiness level and continued periods of retching (especially when we sit her up).

This hospital admission has been probably one of our most brutal to date emotionally (especially the past 5 days). We were admitted due to an infection (that is finally showing signs of clearing), but we’ve been forced to see the reality of our situation. At home, all we see is a happy and thriving Evanna, but the truth of the matter is, on the inside, Evanna is slowly fading. We no longer have pulmonary blood flow to her left lung (and there is NO way to surgically fix that…not even Dr. Hanley), and the fact we have not been able to make any progress in decreasing the amount of ventilator and oxygen support Evanna is on since last year, only confirms our greatest fears – we are eventually going to lose Evanna, and it’s only a matter of time (to clarify, it could certainly be several years, and a transplant is NOT an option due to how her heart and lungs are uniquely intertwined). We are still waiting to hear what Dr. Hanley has to say, but our medical team has stated that even IF Hanley comes back saying he might be able to help improve Evanna’s quality of life, it will come with many risks attached to it. Nick and I are generally on the same page in regards to the “bigger decisions” and have known for quite sometime that Evanna is terminal, but the team has asked that we start to discuss the smaller details in regards to how aggressive we want to be and evaluate what’s important to us (which at this point I will keep private, as according to our medical team “there is no wrong answer”, and so those details will remain personal and not be posted for public opinion).

Thank you to everyone who continues to pray for Evanna and support us. I DO read each and every comment, message and text sent to me (sorry for my terrible responding skills), as they truly help lighten and uplift us. Our situation continues to remains incredibly hard, and so our hearts ache under the weight of this trial that Nick and I are having to endure and the decisions that we have to continuously make as parents.

xo The Irvine Family