Monday, April 27, 2015

Calgary Bound! Surprise!

»»»»» CALGARY BOUND «««««

Surprise!! We may be only 6 days post op from Evanna's 3rd open heart surgery, but she is being transferred back to Calgary right now! Sorry for keeping this a secret (I have only just told my own mother a few moments ago), but for the past 2 months they have tried transferring Evanna back to Calgary 4 times, and each time they try and I tell everyone, something happens and they can't transfer her (ie. another clot in her mechanical valve, acute liver failure, etc). I guess I was afraid that if I blogged about it and told people, it would jinx everything and Evanna wouldn't get transferred again.

Anyways, we're extremely excited at Evanna's progress. When Dr. Ryerson first discussed a transfer last week, I sternly told her that "I will believe it when I see it". We initially were told we'd likely be spending another month in Edmonton after this last surgery, so being transferred 6 days after such a major procedure is just incredible. Evanna has been doing so well the last few days, and is completely back to her old self. Playing with toys (and her hands - she loves just looking at her hands lately lol), wanting to be read to, smiling all the time.

I think the best part of all of this is that we actually get to spend Evanna's 1st birthday in Calgary, close to all our friends and family. It's been an exciting few days, and we're still so happy with the direction everything is going in. Though we've still got a few things to accomplish before we can take Evanna home, transferring back to Calgary is a major step towards that.

xo The Irvine Family

Evanna passed out in the stretcher

Thursday, April 23, 2015

PCICU Day 199 & 200


So Evanna is recovering well... however, she is definitely letting her feisty redheaded personality shine through and has made it known that she is not a happy camper. A few hours ago, they switched out her ET tube for the trach in hopes that it will make her happier, but she is still needing to be heavily sedated. When she was intubated, she would bare down and desat (her oxygen levels would decrease) really bad whenever she woke up. While she hasn't done that since she got her trach back, she is still a mad little goobers. We're hoping for a quiet night and if all goes well, they'll take her chest tube out tomorrow, which will hopefully make her more comfortable.


///////////////////////// DAY 200 /////////////////////////

It's been such a busy day for Evanna - but all of it was positive! They took out her chest tube and pacing wires this morning and we went back to her original ventilator settings that she was on prior to surgery (mind blowing in my opinion). We've been able to drastically come down in a lot of her sedation medication, and overall she's doing so much better then compared to yesterday. She has a ways to go still before we're back to her base line, but we're a lot further along than I thought we would be. Last night they restarted feeds and she has been tolerating that very well.

On a side note - during surgery they found some areas that contained puss and sent swabs to the lab. It has all come back negative, so they'll be stopping her antibiotics that she was on prior to surgery this Saturday. They're very happy with her progress today, and if she keeps this up, we could actually be home (well back to Calgary at least), before we know it!

Nick and I spent the day opening more birthday cards for Evanna, and words like "grateful" and "humbled" can't even begin to describe how we're feeling with the support we've received over the last 6 months. To know that SO many people care, pray and think about our little girl around the WORLD is just amazing. When I open cards from Australia, New Zealand, Singapore, Belgium, Germany, all over the USA and Canada, the staff here in the PCICU at the Stollery are just in awe of the impact that little Evanna has made and the lives that she has touched. The power of a beautiful story and social media can do some incredible things.

We've opted to delay in celebrating Evanna's birthday until the beginning of May, so if you haven't sent a birthday card - know that you still have time (click HERE for more details, and the address to mail your card too)!

From the bottom of our hearts and Evanna's special one, thank you again for the love, kind words, birthday cards and most importantly »» prayers!

xo The Irvine Family

Tuesday, April 21, 2015

Surgery #7 Update

So surgery went well, and they're settling Evanna back onto the unit. Dr. Rebeyka was quite shocked at how little the clot was, and that such a little thing was the cause of so much trouble. He actually revealed this was the first time he has ever used a mechanical pulmonary valve, and I think he is very disappointed in all the complications that came from it. He's going to a conference in San Diego next week, and one of the speakers will actually be speaking on this particular valve, so I'm sure he'll have a few words to say on the subject lol.

Before we talked to Dr. Rebeyka this morning, we thought he was going to use a pig valve as a replacement, but when we met with him before surgery, he stated that he was actually going to use a cow valve instead, as it's much more durable. Nick was like "well, what are we going to call her? We obviously can't call her our little piglet", Dr. Rebeyka then replied and said "well, how about little moo-moo?" So, added on the long list of nicknames that we already call Evanna (goobers, doobie, etc), we will now be adding "little moo-moo".

While Evanna was in surgery, Nick and I walked down to the closest Chapters and bought her some more books (thanks Kaylea for the gift card). We made sure one of the books was about cows, and we've been wanting to buy "What Does The Fox Say?", so we got that one too.  We've had many books sent/given to us over the past few months, so Miss Evanna is going to have quite the beautiful collection when we go home.
When we got back from our walk, Dr. Rebeyka came and found us and we discussed what he found within that mechanical valve (the teeny tiny clot). He was just waiting for the bleeding to subside before re-pexing her aorta and conduit forward, and would come update us again. A little while later, he came out and said that her airway looked good, as they did a bronchoscopy while performing the pexy, and it looked like it was stronger than before and it just needs a little more time to get stronger yet.

We are definitely relieved that everything went very well and smoothly. When you think about it, it's quite amazing how much Evanna's little body has endured in such a short period of time.  I really hope this is the last surgery for a long time, but if I've learned anything, it's that nothing is for certain. I sincerely hope this recovery will go as quick and smoothly as possible, so we can begin to work towards discharge (again).

Thank you for you're continued love and support,

xo The Irvine Family

Monday, April 20, 2015

Presurgery Update

Just wanted to post a quick update before tomorrow, as a few things have happened over the course of the day, and things have been a little crazy around here. Right after rounds this morning, Evanna went for her CT Angiogram. It went very well, and I was shocked when they told me they didn't even have to sedate her! They said she was so well behaved and rocked the Angiogram.
However, we do have a major concern, and that is her mechanical valve has completely clotted and the leaflets aren't moving at all! This morning Dr. Ryerson couldn't hear the "clicking" sound and ordered a stat ECHO after her CT. Dr. Rebeyka just landed back to Edmonton (someone told me he was in France at a conference?), and has been made aware by email. They've decided to hold back on a TPA infusion, because it would make Evanna's blood "oozy" for surgery, and because it clotted in an open position, it's best they leave it alone. Due to the latest developments, they may now bump her from second case to first case tomorrow. It's been a nerve racking day, and tomorrow can't come soon enough!

Finally, in preparation of tomorrow's surgery, they will be taking Evanna's trach out and reintubating her. Not sure how I feel about this...but I know it's ONLY for surgery.
Lots and lots of prayers will be greatly appreciated tomorrow, and I'll be sure to keep you all updated!

xo The Irvine Family

Sunday, April 19, 2015

Trach Change & Surgery Date

So we have a surgery date. In my last blog post, I mentioned that it wouldn't happen until next week, and now we know it will happen on Tuesday (April 21 - which falls on Day 198 here in the PCICU...). Though Dr. Rebeyka is back tomorrow, he actually isn't doing surgeries until Wednesday - which meant that unless Evanna were to deteriorate quickly, they wanted us to wait until then. However, yesterday morning I found out that Dr. Rebeyka emailed one of the other surgeons and asked if he could switch OR times, and so now he is now able to do Evanna's surgery Tuesday afternoon instead of Wednesday morning (which was the original surgery date). The initial news of having to wait that long definitely sent me over the edge last week. It was really hard information to process - and though it's "just another week" - it's still another week tacked onto this already long journey. We were finally working towards going HOME, and so this giant step backwards (that sometimes feels like 20), has been incredibly overwhelming.
I've had a few moments where I wanted to ask if one of the other surgeons could do it (because in all seriousness - all 3 pediatric cardiovascular surgeons here at the Stollery are just outstanding and top notch), but there is a reason they would really like to wait for Dr. Rebeyka to do it. He knows her heart, literally inside and out, and other than her tracheostomy, Dr. Rebeyka has done every single surgery on Evanna thus far. Also, during Evanna's last open heart surgery, Dr. Rebeyka did a "pexy", and pinned her conduit and aorta to her sternum to lift everything off of her trachea, which helped open her trachea right up. Only he will really know where all the sutures are, and where to cut, because HE is the one who put them there. So for safety reasons alone - it's best that we wait until Dr. Rebeyka is back. At the end of the day, we do want Dr. Rebeyka to be the one to do the surgery, but my impatience was getting the best of me.

The last week has been relatively quiet - which is exactly what we wanted for Evanna. I did my first official trach change on Tuesday, and it went very smoothly and I didn't run into any problems. One of the tasks that Nick and I have to complete before we can take Evanna home, is learn how to do a trach change. So now Nick just has to do his (which I'm sure he'll do just fine), set up homecare and we'll be good to go to take Evanna home when she's ready!
With a little bit of time on my hands over the past few days and Evanna so stable, I've been able to bug the unit about getting a few things done and ordered. First, I've been desperately wanting a different kind of trach ordered for Evanna. It's one that has been suggested to me by MANY fellow trach moms. It's way nicer - especially for babies with "no necks", and I was encouraged to look into it and get it ordered for Evanna. I brought it up to Dr. Eksteen (our ENT) the day after Evanna's original tracheostomy surgery, and he told me that he had no problem with her having it, and approved it to be ordered. The problem is it takes weeks to get in, and with the plan to be transferred back to Calgary, they asked that I just wait until we got back to Calgary to order it. Now, with our major delay in transferring, I asked the RT manager here at the Stollery to order it, and after a few days of trying to find the right one, has finally ordered 2 for Evanna. 
Secondly, the leads (these read Evanna's heart rate) have been leaving rashes on her skin for the past 6 weeks, and no matter what we do, it has continued to be a problem. I stated that other leads have to exist, but sadly the Stollery had no other ones available. A few days ago, one of the aids on the unit said that if I knew of another kind of leads, they would gladly order some for Evanna. So I scrolled through some old photos of Evanna, and noticed that while we were in the NICU down in Calgary, Evanna had different leads on. I showed the aid the picture, and a phone call was made. Calgary happened to bring up a patient up to Edmonton, so they packed some of the leads they had, and gave them to us to try on Evanna. We've been using them for 4 days now, and Evanna's skin looks amazing - so the unit has put in an order for some more of these better leads and hopefully they get here soon. What's really awesome is that the wound care nurse stated that other patients currently in the Stollery NICU and up on the floor have also been having problems with the current leads, so once the new leads come in, they'll make sure to use them on those patients too!

Our only issue over the past few days is that Evanna has been a little on the tachy side (meaning her heart rate is high). At one point they did put her on ECMO alert again as a precaution, but they retook her off of it within 12 hours. It's been a "hurry up and wait" kind of week around here, and I'm looking forward to getting this surgery done and over with. In my opinion, Evanna is a bit of a "ticking time bomb", and we're kind of just crossing our fingers that her mechanical valve will not give out before Dr. Rebeyka is able to get here and take it out. In the meantime, Evanna and I have just been hanging out, reading books, playing with toys and I've been getting lots of smiles out of her. In regards to her ventilation, we did have to go up on the settings last weekend, but we've been able to come right back down, and she's on the lowest settings she's ever been on. 
As I mentioned on Facebook earlier, our family was recipients of a very kind act of generosity. Gerry Forbes from CJAY92 radio called us Friday morning and stated that our family had been nominated for their "Secret Wish" program, and they had some very special gifts for us. They mentioned toys for Evanna, gas, grocery and credit gift cards for us, along with some movie and dinner vouchers for some much needed date nights. This sweet act of kindness has lighten our load and put a smile on my face. Thank you to those that nominated us, and I'm just in constant awe of the love and support that our family continues to receive without even having to ask.

Evanna will be going for a CT Angiogram tomorrow so they can get a picture of where some of those pexy sutures are. Though Dr. Rebeyka did them, I'm sure a reminder of where he put them wouldn't hurt. She's already had her presurgery ECHO, and they just want to do this before opening Evanna back up. It's a big week, so extra prayers will be much appreciated. Specifically, we needs prayers that her CT Angiogram will go off without a hitch, and most of all, that surgery will go smoothly and no complications arise. I so badly want this recovery to go fast and smoothly, and it still breaks my heart that this is all happening just one week shy of Evanna's first birthday. No mother ever pictures a birthday in the ICU - especially their child's first birthday. Yes Evanna technically won't remember all of this, but when I pictured Evanna's first birthday, this was definitely the last place I pictured it to be. Regardless, I'm going to make the best of the situation, as her first birthday is a milestone worth celebrating.

xo The Irvine Family


Only [[9 Days]] until Evanna's birthday. I can't WAIT to show you the incredible birthday card wall that I've been slowly creating with all of the birthday cards being sent to Evanna. The medical staff are in complete awe of it, and are amazed at how popular our little girl is. Many have stated that it completely brightens up the PCICU, and just love all the different and unique cards that are coming in.
Due to surgery, we have officially decided to delay the celebrations until May 9 »» so there is still PLENTY of time to get your birthday cards mailed (19 days to be exact)! Please click HERE for more information. The address to mail the birthday cards to is listed in the event description.

If you can't/haven't sent a birthday card, but would still like to send your wishes, feel free to upload a PUBLIC photo (so I can see it) on Instagram or Facebook, use the hashtag #Happy1stBirthdayEvanna and tag me in the photo so we can see it! Even if you have already sent a birthday card, feel free to virtually send your wishes and show your support. Thanks so much!

Monday, April 13, 2015

Waiting for 3rd Open Heart Surgery

I've been going from being into total shock, to my regular ICU mom on autopilot, and then to sobbing on repeat for the last 48 hours when I think of our situation. All I kept saying to the intentivists for the last several weeks is that though I knew we were still going to be in the ICU, I was hoping to at least be in Calgary and for Evanna to be awake and alert for her birthday. Dr. Rebeyka and all the intentivists were optimistic and agreed that my wishes were achievable and we had been on complete cruise control headed towards Calgary just a few days ago. Evanna was handling NG feeds very well, she was on incredibly low ventilator settings, and she was looking the best we had ever seen her since her first open heart surgery. 
Moments before Dr. Guerra called me in Calgary, I was just telling friends that I was planning on only packing about a week's worth of clothes for Edmonton, as the Stollery was going to call Calgary on Monday (today) to secure a bed in the PICU at the Alberta Children's Hospital and arrange for a transfer on either Tuesday or Wednesday.

My life is a mixture of very little control of where I "live" and I am pretty limited on what I can do on a day-to-day basis. This has been going on for so long, and so I am just growing a little exhausted of our predicament. Of course I am willing to stay in Edmonton for as long as possible for the sake of Evanna - because at the end of the day, that is all that MATTERS. Evanna's health, well-being and life is really is what is most important, and so though it is less than ideal for me, I will do whatever I have to, to make sure Evanna receives the best care possible. I do miss my best friends, the get-togethers with them and our family. I miss celebrating the holidays and birthdays and just the relatively normal social life that I use to take for granted.

As for the latest news: right after I posted yesterday's update, Dr. Ryerson took Evanna off of “ECMO Alert”, as she felt Evanna was more stable and didn't require the alert anymore. Evanna spiked another temperature, and a staph infection from her trach came back positive, so they switched up her antibiotics and started her on some new ones.
They did start her on TPA yesterday (it's a "clot busting" drug) to get her valve to somewhat work again, because they are trying to do whatever they can to keep Evanna stable and tide her over until next week. They were originally going to do 6 hours of TPA, but just before we hit the 6 hour mark, a tech showed up to do an ECHO, and when we took the blanket off of Evanna, she was soaked in blood, as an earlier poke site began that to bleed out. Dr. Ryerson ordered for the TPA to be stopped immediately, and thankfully the ECHO revealed that one of her leaflets was working again and so they decided to just keep the TPA off in the meantime.
Blood gas tests showed that her hemoglobin was low (which wasn't unexpected), and so they decided to give Evanna a transfusion. Finally about 8pm, things really began to settle out, and so I left to unpack my car and bring all my belongings back into the Ronald McDonald House. 

Today has been somewhat of a calm day, which has been nice. The unit has been incredibly busy with other patients requiring the intentivists attention, but they check in every so often to make sure Evanna's mechanical valve is still clicking and that she is doing alright. We found out that Dr. Rebeyka will for sure be back on Monday, and we're just waiting to see when they will actually schedule a surgery to replace that valve. Not too many details have been discussed as to what kind of valve they may replace it with, but they kind of want to wait until Dr. Rebeyka is back, as those discussions are more appropriate to be between myself, Nick and Dr. Rebeyka.
I'm hoping we'll have a better idea as to a surgery date by tomorrow, but my best guess is it'll be either Monday or Tuesday. 

I’ve also been joking with some of staff that Evanna just wanted to celebrate her birthday here in Edmonton with her friends, which are all the nurses, RTs and intentivists in the PCICU at the Stollery Children’s Hospital. I’ve already talked to “Child Life” about making appropriate plans for Evanna’s birthday in the PCICU, and once we figure out a surgery date and when most of our immediate family is free, we’ll make more concrete plans.

Anyways, if I could ask for specific prayers, it'll be that Evanna continues to remain stable until next week and will be strong and well going into surgery (fyi - this will be her 7th surgery in 6 month).

xo The Irvine Family

Sunday, April 12, 2015

Easter Weekend, Mechanical Valve Issues and ECMO Alert (again)

With everything that's going right now, I wish I wasn't so behind in posting. Despite Evanna's INR level being extremely high, her mechanical valve clotted again and we're not really sure why. Dr. Guerra's best guess is that her valve is infected, but at the moment we don't have anything to confirm that. Though Evanna was technically placed on ECMO alert yesterday as a precaution, she is very stable, and so please excuse the long post going over the last 10 days or so.

Here's what's been happening over the last week (and a bit):
After "priming" Evanna's stomach with some feeds last Wednesday and Thursday (April 1-2), they pulled her NJ back into an NG and began feeding her at 10ml/hr. She tolerated that well, so after 12 hours they increased it to 20ml/hr. Unfortunately Evanna had a major vomit 4 hours later and it was a terrible night as they had to suction her, reinserted the NJ (not an easy task), and keep her calm. Dr. Ryerson was on that night, and she stated that if Evanna can't handle NG feeds, then we're looking at the fact that she may need a G-Tube, which means that because it's another surgery, we're buying ourselves another month in Edmonton. Nick and I both stated that we definitely wanted to try NG feeding again, but we should definitely go at a slower pace.

On Easter Sunday, they re-pulled back her NJ into an NG, and we began at 10ml/hr and decided to do smaller incriminates, and only increase every 24 hours. Though it was an emotional day for me due to the fact we were spending another holiday in the hospital, it was still a good day, as Evanna was doing very well and I got to hold her lots. The unit was relatively quiet and empty due to the long weekend, and Evanna's nurse and I had a lot of fun dressing her up in her Sunday best and playing with her.

The rest of the week was spent increasing Evanna's feeds and lowering the ventilator support she was on, all of which she handled beautifully. Nick brought up Evanna's activity mat from Calgary that she use to play on before surgery, and Evanna just loved playing with it. She also began to "self-wean" herself off of the sedation medication she was on, as she made it really easy for the intentivists to decrease a lot of the medication she was on. She was so sleepy some days, and the only way to fix that, was to decrease the amount she was on and how often she was getting all her drugs.

On Wednesday night, Nick and I decided to somewhat celebrate our anniversary. Originally we were suppose to go to Canmore, but because Evanna was so awake, and we were still in Edmonton, so we decided that Canmore can wait, and just find a way to celebrate here. I booked one of the really nice suites at the Fairmont Hotel McDonald and a massage for myself (Nick had NO interest in getting a massage for himself lol). It ended up being a really lovely evening, and while we did have our cellphones on us in case the hospital called, we left them alone and enjoyed each others company. We had dinner at the restaurant there, took a swim in the swimming pool and the next morning I went for my 90 minute massage. I've been meaning to go for a massage for a while now (as I was really needing one), but I'm glad I finally went and had one. Between the not so comfortable beds at the Ronald McDonald House here in Edmonton, to sitting in not the best chairs everyday beside Evanna's beside, my body has taken a beating over the last 6 months. Overall, it was a wonderful evening and morning with Nick, and it gave us a chance to rest and regroup. I don't even think I took one photo (I know - total shocker!)

My parents came up on Friday as I wanted to make a quick weekend trip down to Calgary to see some friends for a birthday party and sleep in my own bed. Evanna was really stable, and my parents had been dying to come up and hang out with her. After spending Friday morning with Evanna and getting as many smiles out of her that we could, we left Edmonton and headed back to Calgary. The plan was for me to come back today and then for Evanna to be transferred to the PICU at the Alberta Children's Hospital sometime between Tuesday and Wednesday, depending on when they had a bed and a transfer could be arranged. On Friday evening Nick and I went for dinner in Okotoks with Nick's family to celebrate his brothers birthday after getting back to Calgary, but had an early night as Nick had to work the next morning. Yesterday my sister came over and I finally got to meet my new nephew Dax for the first time since he was born 6 weeks ago (he was born the day after Evanna was airlifted back to Edmonton via STARS air ambulance). We then went for a late lunch at Open Sesame for our friends birthday, and it was just so great to see some of my friends again and in person.

Unfortunately, my meal was interrupted by a phone call from the hospital, and it wasn't good news. Dr. Guerra had called to say that even though Evanna's INR was really high (it was actually too high at 6.3, when we normally want her levels to be between 2.5 - 3.5, which meant that her blood was very "thin", and would take a very long time to form a clot), her mechanical valve clotted again, and they're only guess is that maybe the infection she had a few weeks ago affected her valve. I was incredibly heartbroken and had a hundred questions running through my mind. It's also the weekend, and so though Dr. Rebeyka was made aware, it took a little while to come up with some sort of plan. They brought up TPA (that "clot busting" drug that we've used in the past), and said they might start her on it. I asked if they needed me to come back to Edmonton immediately, but Dr. Guerra assured me that other then a high fever, Evanna was stable and doing well. She had been puking a little bit, so they lowered her feeds and also increased her ventilator support, as they didn't want make Evanna work any harder than she had too. I quickly called Nick at work and filled him in with the news. I decided that because nothing was happening that day, and that because Evanna was doing very well otherwise, to still stay in Calgary and get one last good sleep in my own bed, as I have no idea as to when I'll have another opportunity to do so again.
Dr. Guerra did call me again to say that though Evanna was really stable, they know things can change in an instant, so they want to place her on "ECMO Alert", only as a precaution. It was more to just ensure that blood was set aside for her, and they had everything ready in case Evanna were to decline quickly. He again reassured me that I was okay to stay in Calgary for the night, and that he would call me if her status were to change. They also had Dr. Massicotte (Kid Clot/hematology) come into the hospital to help write up the TPA orders for Evanna, and get her Warfarin/Coumadin reversed. He reiterated what I already knew, and that a transfer back to Calgary this week was completely off the table. He also stated that this was definitely not an anticoagulant issue, and that maybe her valve was infected.

I drove back up to Edmonton early this morning, and Dr. Ryerson filled me in with everything that's been going on the last 12 hours or so (I called this morning only to check that Evanna was still stable and doing well). They all agreed that the mechanical valve has to come out, however our surgeon is currently away, so it may have to wait. They decided to start her on some TPA for 6 hours and we are going to try and keep her stable for the next week until Dr. Rebeyka is back. Obviously if something happens and they need to do it sooner, one of the other surgeons can do it, but because Dr. Rebeyka knows her heart best, they want to wait until he's back.

It's been an emotional 24 hours and I'm beyond devastated. We were so close to coming back to Calgary and working towards coming home for good. We are now facing another open heart surgery in about a week if Evanna cooperates (sooner if she doesn't), and we will DEFINITELY be in Edmonton for Evanna's first birthday. It's Sunday, so I still don't have all the details. Heck, there has been SO much information thrown my way, my head is spinning and so I'm sure I've left details out. I'm going to try and catch my breath tonight, and do an update tomorrow once we have more of a plan and the intentivists reiterate a few details to me again. I've asked that Dr. Cave (our primary intentivist) be contacted and filled in with all the details, and hopefully I will get a chance to talk to him tomorrow.

I decided to bring up to Edmonton the birthday cards that we've already received in the mail, as I still want to open and hang them close to Evanna's bed. If you haven't sent one, you still have time. There are still 16 days until her birthday, and I will be making arrangements for any additional cards that arrive over the next few weeks to get to Edmonton for her birthday. Please click HERE for more information, and the address to mail the birthday cards to is listed in the event description. Again, please feel free to send a birthday card, share this event and invite your friends and family.

xo The Irvine Family

Thursday, April 2, 2015

PCICU Day 172 - 179

So...we're still in Edmonton. Dr. Rebeyka and the intentivists were hoping to transfer us back to the Alberta Children's Hospital on Wednesday (yesterday), but Evanna's warfarin medication had only been restarted on Monday and Kid Clot (hematology) wasn't comfortable with her INR levels yet and they kiboshed that idea.
Over the past week, Evanna has continued to improve and get better each and every day. The daily lab work done on her liver showed she was improving very nicely and followed the exact trend they were hoping for. Unfortunately they still have no reason as to why Evanna crashed, and stated that they never find the reason for acute liver failure roughly 60% of the time. Based on how her liver reacted and then recovered, it all points to some bacterial or viral infection - however, we'll never know.
We continued to have problems with bleeding from her arterial line in her right arm, and though they did their best to keep it because it was still working well, they finally had to pull it out after 8 days. Her arm looks terrible, but I know with time, it will heal just fine.
Currently we're trying our best to try and keep moving forward with Evanna's progress and work towards discharge. It sucks that there is just some things we can't do until we're back in Calgary, so we're in bit of a holding pattern until then. Usually I would be ecstatic that we're still in Edmonton, but this time is different and so I'm definitely anxious to getting transferred as soon as possible. I'm working on getting Evanna strong by getting her into the tumble-form chair everyday to build some strength again, and Dr. Anand as agreed to introduce a tiny bit of feeds into her stomach today so we can eventually switch her over to NG feeds, and then even see if she can bottle feed again.
*Evanna has been NJ fed for the last 6 months, meaning food is going into her body past her stomach. This means her stomach hasn't food in it for a very long time, so we need to be careful and start out very slow and not cause her stomach go into shock.

It's been both a happy but emotional week for myself. I've gotten to hold Evanna lots, see some of her personality shine through, and Nick got to hold his little girl for the first time in about 75 days as he hadn't held her since mid January. However, we're coming up to 6 months in the ICU and we still have a ways to go. Babies come and go from this unit, but we still remain. I know our know our time will come, and what a glorious day that will be when we drive away from the hospital with Evanna in the back seat. Nick left again this morning, and though he dreads another trip back up to Edmonton next week, we really hope it will be the last one for awhile. I'm tired of living out of my suitcase, and I know Nick is tired of the weekly trips to and from Edmonton. This journey has definitely not been an easy one, and it has been an incredibly long one at that. A transfer back to Calgary is just one step closer to home, so we are really hoping that will happen early next week.
Thanks for continuing along and praying for our sweet girl.

Please remember to send a card for Evanna's 1st birthday. It's coming up quick, and if you want it delivered in time, make sure to get it in the mail as soon as possible! For more details on the "Cards for Evanna's 1st Birthday" public Facebook event, please click HERE. The address to mail the card to is listed in the event description, but please feel free to comment if you have a question or query.

xo The Irvine Family