Wednesday, December 31, 2014

My IG Vent

I originally wasn't going to post about this, as it involves me stooping to their level and acknowledging their comment, but I can't seem to shake it. Earlier today, I got a comment on one of my photos of Evanna on Instagram a few weeks back wearing a headband (of course), and this person had the audacity to accuse me of "using my sick child for advertisement". I promptly deleted their comment and blocked their account. I was hurt, and I'm sad to say that it even made me stop and think that maybe I was. I quickly shook that thought, and here is my public response to that:
Yes, I post + tag the IG shops that I purchase (and sometimes gifted) Evanna's headbands from. Why? To give credit where it is due (because some of these headband creaters are incredibly talented), AND avoid the 20 comments a day that I would probably receive asking where they're from. I know this would happen because I've had FB friends ask me multiple times where I get Evanna's headbands from, and on a DAILY basis, I'm writing down the information for the nurses that ask as well.

I guess my question to this lady is: would it be acceptable to "advertise" where these headbands are from if my child wasn't sick, and at home and healthy? Why am I not allowed to state where her headbands are from because she happens to be sick and in the hospital? Walk a mile in my shoes - would ya for a minute!? I spend EVERY POSSIBLE waking moment at my baby's bedside in a different city, miles away from home, away from my husband, family and friend, and I plan to continue to do so until we bring her home AND for every future hospital admission that she WILL have. My life has been put on hold for the past several months (not that I'm complaining) and we are living a daily nightmare.

This is the ONLY way for me to "dress" my baby girl and forget that for one moment that we are in a hospital hooked up to a million machines and the fact that my little girl is still intubated. I haven't held her in over a month in fear that it would cause her breathing tube to rub against her already fragile trachea, as I want her to be in the best possible condition to extubate successfully (and the fact that there just isn't a lot of room here in the squishy PICU).

Do you think I'm enjoying our situation? Don't think for one minute that I wouldn't trade all the headbands, recent followers, and attention for a boring and normal life at home with my baby girl. What I wouldn't trade to make this whole thing go away then having to watch on a daily basis my child be bagged, suctioned, blood transfusion after blood transfusion, daily dressing changes, hourly blood pressure checks, THREE MAJOR SURGERIES (with many more to come), countless bronchoscopy's that involve trips to the OR and be put under anaesthetics, risky Cath procedures, 2 MRI's, 3 CT's with contrast, DAILY chest xrays, 4 failed extubations, enough sedation medication that would put ME out on a DAILY basis (morphine and ativan around the clock, with constant ketamine, chlonidine and cholro to keep her comfortable), and 4x/day lab work (and I'm sure I'm missing so many other things).

So what if I get offers of headbands? These shop owners find my profile + blog, and are taken back by Evanna's story, and are using their talents and the only way they know how to, to show support for our little family (I have never once asked for free headbands - except to one person who was insistant that she help in some way, so I stated "send more headbands", as that was all I could think of). Does that make me a bad person? Absolutely not! Yes, I'm using this opportunity to share our story to educate and create awareness of CHD's {the #1 cause of birth defect related deaths}, inspire people, and maybe even get people to think and realize how lucky they truly are. I KNOW Evanna would be proud of me, and nothing short of that. I am her mother, so because of that, I am her advocate and mouth piece. How dare you accuse me otherwise. I know she would appreciate the length I go to, to remind and show everyone that she is just a little girl and see past all the tubes and wires that cover her body. I do my best to cover up with blankets the full picture and what she really looks like, because I just want people to view her as the cute baby that she truly is. I'm sorry she is sick, and that my picture of Evanna in a headband made you think otherwise. This has been the hardest 3 months of my entire life, and for you to try and "knock" me down further, only shows your true character. From what I can tell from your private IG profile, you are a troubled young lady who lives by herself and obviously many personal issues. You know nothing about my life, expect for what I have put out on social media, and displayed for the world to see. I would never wish this situation on my worst enemy and it pains me to know that every day we have with Evanna is truly a gift and miracle.

May you never know my pain or daily anguish of knowing that our time with our precious daughter could quite possibly be short in this temporal life. Your attempt to try and make me feel like a terrible parent has ultimately failed and if anything empowered me to think just the opposite.

Kierra Irvine - Evanna's Mom
{AKA Mama Bear}

Tuesday, December 30, 2014

PCICU Day 84, 85 & 86

So yesterday I wrote on Instagram (@kierrai) with great excitement that we were extubating today, however in true hospital fashion, that decision was changed within hours of me posting that, and we're now looking at a fourth surgery, and one step closer a tracheotomy. It's making me so superstitious, and afraid that if I post good news, the opposite will happen, and for once I would like to post about making some positive and significant progress. It's definitely a little heartbreaking for myself writing yet ANOTHER update like this, and I just wish Evanna would get a break.

On Sunday Dr. Ryerson came on (we LOVE her), which I was glad to see as she likes to get things done. The one annoying thing about Christmas in the hospital, is that nothing really happens as everyone is on holidays, and everything kind of  slows to almost a complete halt. Yes, it's good to have "resting" days for Evanna, as that's the best thing for the body, but it makes my impatient self go a little crazy.

We turned down Evanna's PEEP to 8 on Sunday, and for the first 24 hours, she seemed to be handling it okay. Then on Monday morning we noticed her "work of breathing" was increased and you could tell she was having a tough time. We're also having a tough time figuring out why Evanna continues to have an elevated heart rate and temperature. Blood cultures and a nasal swab taken over Christmas all came back negative, and though we initially chalked it up to withdrawals (as Dr. Ryerson made some changes to her medications), we no longer believe that to be the case. So at lunch time on Monday, Evanna's PEEP was turned back up to 10, and the extubation plan was scrapped.

Before the holidays Dr. Rebeyka mentioned that he had one more trick up his sleeve that he would like to try surgically to see if we can extubate Evanna, so we're basically trying to figure out if that's the direction to go in. Tomorrow (Wednesday), Evanna will be having another bedside bronchoscopy (it's a little less invasive then the rigid bronchoscopy done down in the OR), and another CT Angiogram to see if they can find any more areas of compression. After that we'll talk to Dr. Rebeyka (who is currently away on holidays and will be back next week, but they have emailed him), and see what he decides as the best course of action.

It's been a really hard day for me emotionally. They re-cultured Evanna (both blood and ET tube), to see if another infection is to blame for the higher heart rate and temperature, but other than that, it has been a quiet day. I was so hoping to extubate Evanna and have it be successful, but the fact that we didn't even get a chance to extubate her leaves me heartbroken. I definitely did a little retail therapy this afternoon, and I'm looking forward to tomorrow, as it will be a new day.

Evanna is still doing well, and we celebrated her 8 month "birthday" yesterday. The nurses just absolutely love her, and think she's just the cutest thing ever. 
I'll update when we know the next step - and again, thank you for following along and your continued support.

xo The Irvine Family

Saturday, December 27, 2014

PCICU Day 80, 81, 82 & 83

Pink Bow and Blanket courtesy of Jarred, Kayleigh and Lucas Baker (Blanket made by Kayleigh's friend Vicki Hatcher)
Well it has been a busy few days around here in Edmonton. My parents, sister and her family, as well as Nick all drove up on Christmas Eve to spend Christmas with us. So I have been very busy between entertaining company and spending time with Evanna at the hospital over the past few days.

On Wednesday morning we decided to involve OT into Evanna's care, as I was noticing that her hips were getting wider and wider as result of being confined to a hospital bed for such a long time. At the moment we're just making sure to keep pillows and rolls on either side of her legs in hopes that will be enough without resorting to leg braces. I know it's just another thing to add to our never ending list of issues with Evanna - but this one is very minor in the grand scheme of things, and definitely something I can handle.

The whole family arrived around 4pm Wednesday evening, so we just hung out at the Ronald McDonald until supper was served and then headed to the hospital so we could visit Evanna.
The unit was so gracious and let everyone come in at the same time so we could see Evanna, open gifts and take some pictures. After a couple of hours we headed back to the Ronald McDonald House to eat some goodies and play a few games. It was a long day for myself, but it was nice to do some things that I would normally do on Christmas Eve.

On Christmas morning, Nick and I headed over to the hospital to see Evanna by ourselves and have some quiet family time. Evanna spiked another fever, so they started her on some antibiotics again, and we put lots of cool clothes on her head to help control her temperature. Around 11am, Santa came around and literally had a sleigh full of presents for the kids on the unit and I was able to get a picture of him standing over Evanna's bed, which just made my whole day! Around lunch we headed back to the Ronald McDonald, where my mom was cooking up delicious pancakes and see my sister and niece one last time. After brunch, my mom cut Nick's hair and coloured and cut my hair as we were both in major need of hair cuts before heading back to the hospital. 
After visiting for a little bit, we left for supper (which ended up being one of the best meals I have ever had the RMH), and then while Nick went back to the hospital afterwards, my parents and I went to go look at a puppy that my mom was thinking of getting. So without really meaning too, they bought a puppy on Christmas Day and brought her home in hopes of giving their other dog a new companion after their other dog passed away earlier this year.

My parents left Edmonton on Boxing Day for home and Nick and I spent the day with Evanna. Though it was nice to have family in town for the holidays, it was also nice going back to just our little family again. Evanna still battled a high temperature all day long, so Nick was putting new cool clothes on her every half hour (he's such a good daddy!) and kept her as comfortable as possible.

This morning Evanna still had a little bit of a temperature, but it seems she has finally turned a corner this afternoon, and it's down to a reasonable level. Her PEEP is down to a 9, and she has been holding steady with the slow decrease on the ventilator. She was suppose to go down to a PEEP level of 8 today, but after all she's been through this past week, I guess we decided to leave it at 9 for one more day. Her xrays continue to come back with fair and steady results which is a good thing, and showing that she's handling this very slow decrease just fine.

I think the plan is to extubate Evanna to BiPAP sometime this week and PRAY (and pray some more) that she stays extubated (she's never lasted more than 4 days). I'm hopeful that she'll succeed, but so cautious and nervous of what happens next if she fails.

I want to thank everyone for all of the Christmas cards that we got over the holiday season. I'm going to go buy some pins and hang them all up tomorrow and take a picture, because I feel so incredibly blessed to read them all. We even got a Christmas card that came to Evanna in the PCICU on Christmas Eve all the way from Germany from a sweet Instagram follower!!

xo The Irvine Family

Tuesday, December 23, 2014

PCICU Day 77, 78 & 79

Well, we're as ready as we can be for Christmas around here. Nick and I just bought a few things off of our "want" list back when we were in Calgary for each other, and we kept things to a minimum in regards to Evanna. I bought her another doll to go along with her bunny girl, and a Christmas headwrap (I have much bigger plans for her birthday gift). I don't know what Nick got Evanna, as he's keeping it a surprise from everyone, but knowing Nick, it's going be incredibly thoughtful and amazing (one of Nick's talents is thinking up awesome and personal gift ideas!).

The last few days have continued to be quiet around here. Daily adjustments are incredibly minimal, which means another boring update. They turned down her sedation as she was sleeping too much and was practically unconscious all of Sunday. They also have begun to decrease her PEEP level little by little. This is the sole reason of why we're having a trouble extubating Evanna, as she's been requiring a higher PEEP to keep her trachea open. She started out at 14 when she had pneumonia, and is currently sitting at a PEEP of 10. The goal is to get her down to a PEEP of 7/8 before we feel she can handle another extubation and possibly be successful.

If we can't lower her PEEP to a low enough level, ENT and Cardiology feel we should proceed with one more surgery before we land on a tracheotomy being the final answer. Edmonton is just more resistant to traching Evanna because trachs get in the way of future heart surgeries, and they would really love to avoid one if we can. Dr. El-Hakim came by this afternoon to say that he reviewed Evanna's last bronchoscopy that was done by the other ENT last week, and he says he was able to see a marked improvement! Oh those were sweet words to my ears! Though we are not out of the woods, and again - a tracheotomy is STILL on the table, it makes me so happy to hear that things have improved and going in the right direction.

We also got moved to the "overflow" area in the PCICU again (and into the exact same spot we were last time, hopefully she doesn't repeat history and code on us again). There is a huge bed shortage in the PCICU, and because Evanna is technically the most stable, she got moved as they don't need to keep such a close eye on her. I'm going to miss our bed neighbours, the windows and the actual unit itself, but it's a huge positive knowing how confident the intentivists are with Evanna and how stable she is.

Anyways, please continue to pray for her little heart, and her little airway, and thanks so much for continuing to follow along.
I'll update again after Christmas!

xo The Irvine Family

Saturday, December 20, 2014

PCICU Day 75 & 76

I remember back when Evanna was first born, I was so upset when they put an NG tube in (it was taken out a few days later because her feeding increased on its own), and I was devastated that she had a tube going into her nose. Though that was only earlier this year, it seems like a lifetime ago, and I just have to laugh when I think about it.

So in regards to Evanna, things are going incredibly slow, so please excuse the boring post. Yesterday we hit the 75 day mark of being in the hospital, which means 100 isn't that far away. I've already come to terms with that reality, so I'm okay with it. Since the end of November we've known that we'll be spending Christmas and New Years in the hospital, so I've had plenty of time to adjust to that, and if anything, it'll be a Christmas that we never forget.

I wasn't able to spend much time with Evanna yesterday, as the PCICU was shut down for parents for most of the afternoon. The PCICU closes on almost a daily basis (especially Monday - Friday) whenever they are doing a procedure on a patient or something is going down and they need the unit cleared. This is the one down side to an open unit, but it usually only lasts about 1-2 hours. Yesterday was a different story, as this time we were rushed out of the unit (normally we get a little warning), and it was closed for almost 5 hours. I don't know any details (privacy wise), but I do know it was due to an emergency situation with another patient. I know many people wonder how I'm able to remain relatively positive about our situation - but in the PCICU, Evanna is not the sickest patient in here. With the unit so open, I can easily see what's going on around me, and though we've been here a long time, Evanna is actually considered very stable. Other then a little bit of small talk, we don't see the intentivists except during rounds, and she's considered a nice "break" for the nurse that has been assigned to her for the day. We would seriously be home if it weren't for the fact that she is still intubated! Dr. Duff (one of my favourite intentivists) is on for the next week, and he joked that he should just skip doing rounds on Evanna because the daily changes on her is so minimal, it makes us impatient people antsy. So while it sucks that we're still in the hospital, I am GRATEFUL for the "health" of Evanna. There are currently so many babies on ECMO (life support) right now, and incredibly sedated. We get to at least interact with Evanna, encourage smiles out of her, have her grasp our fingers and talk to her. Today I even read a book to her for the first time, and I'm kicking myself wondering why I didn't do it sooner - she absolutely LOVED it! Thanks Grandma Sandy for bringing them to Edmonton for us!!

So while it sucks that we're in the PCICU, and we're going at an incredibly slow pace, I'm trying to remain grateful. I still can't wait to hold her again, and be home doing normal family things, but in the meantime with that not being possible, I will still count my blessings.

Evanna was completely put back on NAVA (!!! I love that machine) yesterday (they had her on NAVA earlier, but just for monitoring purposes), and Dr. Duff and the RTs have already made some decreases. During rounds I was talking about her PEEP and EDI levels, and the RT asked if I was an RT. I laughed and said no, and told him that I've just been here for a long time and so I've picked up on lots of things. NAVA is a fairly new, and Edmonton hasn't really used it before, so with our Calgary NAVA "experience", I almost know more about it then some of the RTs here at the Stollery. Dr. Duff also wants to change some of her IV drugs to oral ones, but wants to wait until tomorrow. We've learned that changes to Evanna have to be one at a time, as well as using small baby steps. Dr. Duff told us it's time to see if she'll sink or swim in regards to extubation ("just keep swimming"), and it may take a few weeks to see what she does. He also gave something to Evanna today to help her poop, as it's been over 4 days since her last dirty diaper!

As for side notes, Evanna now weighs 6.3kg compared to the 5.8kg that we brought her in at. I'm not sure if that's good for a 7 month old, but for a cardiac baby IN the ICU for such a long time - that's awesome! The nurses are constantly commenting on her chunky arms and thighs, and the fact that she is always warm (again, something they don't normally see with cardiac kids). Also, Evanna has started to become known for her adorable headbands, and some of the nurses come by on a daily basis to see what headband Evanna is wearing.

That's all for now!

xo The Irvine Family

Thursday, December 18, 2014

Plan J?

Floral headwrap from Mint and Arrows

So we finally have a normal milestone to celebrate - it looks like Evanna is finally getting her first tooth!! With Evanna being confined to a bed, she's not able to grow and develop like a normal baby, so these small and little milestones are a big deal for me. She is still growing and gaining weight little by little (a huge accomplishment in itself considering the circumstances), but I just can't wait to bring her home and watch her roll over, learn to crawl and even start standing up!

Anyways, we've gone through so many "plans", that I'm starting to loose track and forget what the original plan was (oh yeah, have open heart surgery and be home within 2 weeks...). So late Monday night, the ENT specialist finally came over to talk to me and tell me his opinion on Evanna. He felt that an aortapexy would not help her and wouldn't relieve any additional pressure off of her trachea. This basically means that Cardiology and ENT are both now in agreement that we should extubate Evanna before we do any more procedures. This time they've agreed to go much slower in decreasing her ventilator support and also wait until the full course of antibiotics is run through (14 days) for the pneumonia.
I'm so paranoid about Evanna failing extubation, that I've piped in when I think they're going to fast on the ventilator decrease. She's been intubated for soo long that her trachea and lungs are so week from the support she's been given, and I just want them to give her time to build up strength again. 

Nick came back to Edmonton on Tuesday, so basically we've been hanging out and enjoying our "boring" days here at the Stollery. Monday and Tuesday were definitely Evanna's best days of being awake and happy (smiles!!), but she's definitely been a little bit more sleepy and grouchy the past 48 hrs. I don't know if it's because they keep bugging her or if her sedation needs to be decreased. I will definitely be keeping my eye on everything and may even bring it up at rounds tomorrow morning.

Dr. Rebeyka also came by yesterday and said if Evanna fails extubation again, he has one more trick up his sleeve before we proceed with the trach. Instead of going in and pulling everything forward (aortapexy), that maybe going in and pulling everything from behind (posteriorly) might benefit Evanna. He still wants to go and take a look at her last bronchoscopy video, but he thinks that might help in getting her successfully extubated. Basically we just have to take it one step at a time, and slow and steady may win this race.

For those asking about the blanket (I definitely found it a little funny that everyone was so concerned about this lol), I picked it up from the dry cleaners yesterday and for the most part it looks good as new. There is still ONE blood stain that is wanting to be stubborn, but it's not extremely noticeable, and maybe once this is all behind us, I will order a second blanket to keep for special occasions and let Evanna go to town and get this one as dirty as she wants. It's definitely one of my favourite blankets of Evanna's because I ordered it while I was still pregnant with her, and it was a little on the pricy side. It's a custom blanket that says "Evanna" all over it, and it's from Jennifer Ann Style (I've had many people asking where it's from, so here is the link).

Also, I need to bring up how blown away I am with the amount of support our little family has received over the past few months. My Instagram following has more than doubled over the past few months, and the amount of comments and messages we get is outstanding. Please know that I read EACH and every one of them, and I truly cherish the kind and gracious words that are written. I try my best to respond when I can, but I've had to leave my responses to when people ask specific questions, as there are only so many hours in a day. 

Yesterday I won a "Cash Giveaway" Instagram contest from Convey The Moment, and due to her large following, I know she had thousands of people enter. We were eating supper at the Ronald McDonald House when my phone started to lite up with tons of notifications, and when I went to see what all the fuss was about, I saw that I had won. I literally started shaking with excitement and couldn't believe my eyes. Not only that, but tons of comments began to fill mine and Eleni's (the author of Convey the Moment) feed with happiness and joy that I had won. Everyone was so kind and gracious about me winning with prayers and thoughts for Evanna and wishes for a Merry Christmas for our little family.

In all, it's been a very good week, and I really hope this is the start to some much needed luck and positivity we so greatly need!

xo The Irvine Family

PS. I was giddy with excitment when we recieved a special package earlier this week from one of our favourite etsy shops Mint and Arrows containing 3 beautiful headwraps. Can't wait to show you the Christmas one next week!

Monday, December 15, 2014

PCICU Day 69, 70 & 71

I've slowly realized how desensitized I have become to our situation. With Evanna being in the ICU for so long, I've grown increasingly use to it, and it has totally become our new normal. I believe it has become a coping mechanism to protect myself from a complete meltdown and mental breaking point. I've created a daily routine that I stick to, and have little things I do everyday to keep my sanity (ie. Dinner at the RMH, evening trips to either David's Tea or Starbucks, etc). However, in an instant (like Evanna having a particular test or procedure or someone comments on something), I am reminded that what we're going through isn't normal and it can leave me sad and crying for hours.
Friday night/Saturday morning was one of those moments. Just after I blogged at how well Evanna was doing, she started to take a turn. Finally I left for the night, but before I did, our night nurse commented that she doesn't know how parents do this, especially for an extended amount of time. I'm not saying she said anything wrong or inappropriate, but it got my wheels turning and kind of popped me out of the autopilot I've been in for the past few weeks.

I was still in a little bit of a slump the next morning, and so the fact that Evanna was having a terrible day made for a stressful and bad day overall. She had a really high heart rate and temperature, and was really miserable. They kept having to give her additional drugs (PRNs) to keep her comfortable and sleepy, because if she was awake, her heart rate and temperature would go even higher and she would drop her O2 levels significantly. The RTs were constantly having to come over to bag and suction her, which meant they were touching her ET tube (breathing tube), which would make her even madder. The final straw for me that day was while I was having lunch, they started a blood transfusion and the nurse got blood on her custom "Evanna" blanket and she let the blood set it. Normally when they give Evanna transfusions, I'm there and make sure to clear her bed of personal items, as transfusions can be a little messy. I came back with the other nurses frantically trying to get the blood out with no success. I grabbed the blanket and decided that it was time for me take a time out and leave the hospital. I took it to the dry cleaners, but major tears were involved while driving there and dropping it off (I'm sure I was a site to see inside the store lol), but I'm hopeful they will be able to get the stains out.
I decided to take my time going back to thoe hospital, ate dinner, watched a TV show and grabbed my favourite drink at David's Tea. I went back to the hospital in a much better mood, and Evanna was starting to improve. They had taken cultures earlier that day, and it looks like Evanna had gotten pneumonia, which would explain why she was so sick and needed so much more ventilator support.

She had an excellent night on Saturday, and I came back in on Sunday to a whole new baby. She was awake, looking around and pretty much back to her baseline all morning long. They had to change out her NJ tube (feeding tube) twice, and put in a new central line yesterday, as they kept loosing IV access, so they had to sedate and increase her PRNs yesterday afternoon.

Today I was told she had another really good night and she's been having a good day. Dr. Rebeyka is back, and so they're is lots of talk between ENT and cardiology on the next step. Obviously Evanna's not-so-calm weekend meant they couldn't extubate her today, but cardiology would still eventually like to try. ENT, however really thinks we need to proceed with an aortapexy as they feel there is still too much compression on her trachea. I can definitely appreciate both sides of the argument. Was last weeks surgery enough to make an extubation successful? Or should we just do everything we possibly can before we put Evanna through an extubation. They've decided to get a second ENT consult, so Evanna went for another rigid bronchoscopy today. At this point we're STILL waiting to hear back from ENT and their findings, but I'll be sure to update everyone when I know the plan.

I want to thank everyone on Facebook and Instagram for their music input. Music can be very powerful and healing on some days, so I love when I find an awesome new song.

xo The Irvine Family

Friday, December 12, 2014

PCICU Day 65, 66, 67 & 68

There is a reason I like to do stretches between my updates - things change so quickly from one day to the next, that it would probably leave readers even more confused then they already are, especially when trying to grasp all the terms and acronyms I already throw out left and right. On Tuesday we were facing the possibility of ANOTHER surgery in a short amount of time, but now they're wanting to get to a point of extubating Evanna to see if she will succeed without putting her through another risky procedure. {I'll explain later, so keep reading >}

So Monday night was ROUGH! I decided to go back to the hospital to see Evanna after supper while Nick went to bed. It had been an extremely long day that started at 5am for the both of us, and Nick was adjusting from getting off a night shift the previous night. Evanna was proving to be a difficult sedation once again, and was fighting the ventilator big time. They kept having to give her more and more drugs and even paralysing her so she would stop fighting the vent and get her CO2 levels back down to a decent level (they kept climbing to the 70s-90s, and normal is about 30). Her oxygen levels were constantly dropping and her heart rate was insanely high (190-210). I didn't end up leaving the hospital until midnight, so I fell asleep the moment my head hit the pillow.

When we came in the next morning, lots of IV drugs had been started during the night, which I wasn't surprised by at all considering the status I had left her in. She was really puffy probably due to a little inflammation, but mostly because of all the fluid she was on. They loaded up on Lasix in hopes that she would start peeing it off. They also decided to do another bedside bronchoscopy to look at her trachea, but the results weren't exactly favourable. Her airway still narrow and weak, and talks of the aortapexy began to swirl. They were also worried about her lungs and heart, so they did a CT to take a look, but it didn't show much difference.
They decided to email Dr. Rebeyka who was away to see if we should proceed with another surgery, and ask if he wanted to come back and do it himself, or let one of his colleges do on his behalf. The rest of the day was spent trying to keep Evanna comfortable, and while she did require she extra drugs (PRNs) every once in awhile, she was much more settled compared to the previous night.

On Wednesday, Evanna continued to vastly improve. The amount of PRNs needed to be given was less and less, and Evanna was starting to wake up without getting angry. She wasn't exactly making the best eye contact as she was still groggy and loopy from all the sedation she was on, but she was calm nonetheless.
We also heard back from Dr. Rebeyka who stated that he would really like to hold off on doing the aortapexy and see if we can try extubating Evanna successfully before resorting to more drastic measures. Nick and I liked this idea, because the aortapexy is very risky (we would be going back through and reopening her sternum, which isn't ideal when her open heart surgery was only 2 months ago). It's nice to hear that they want to give Evanna a chance to extubate before we consider another operation. Though there is still a huge possibility that the aortapexy still has to happen, the intentivists (Dr. Cave) would be more than happy to be proven wrong.

Yesterday Evanna was wide awake most of the day and constantly wanted to hold my hand. They only had to give her a PRN when they took out her drainage tube and move breathing tube. They also took out her urinary catheter and she handled it quite well. I gave her a sponge bath later later on in the evening and the nurses were constantly telling me what a sweet baby she is.

Today Evanna has been having a very good day sedation wise. Again she has been calm and happy when awake and is content as can be when I'm holding her hand (which makes it hard to write blog updates...). They were very happy with how Evanna handled the decrease in respiratory support they did over night and the plan is to continue to do so today. I'm always so anxious and nervous when it comes to changing her PEEP (this is the amount of pressure being forced into her airway), because while I hope and pray that she does well, I'm so nervous about being disappointed when she fails.
I guess that's our biggest hurdle once again - weaning Evanna off of the PEEP. It's why Evanna still may need a trach, but what they've hoped the last surgery would have fixed and what the aortapexy may also help with. I guess I would just ask everyone to pray for Evanna, and that her trachea/airway will continue to get strong. I know a tracheotomy is still a big possibility and I have already mentally and emotionally prepared myself for that scenario, but obviously I would be ecstatic if we were able to bring our little girl home with out a trach and vent.

Thanks for following along, and I will continue to update as I can!

xo The Irvine Family

Monday, December 8, 2014

Surgery #3

Can I say that as a parent, the time spent waiting for the surgeon to come out and tell you how everything went, is the most excruciating wait you can ever do. Every second that passes feels like a minute, and every hour feels like three. We didn't know exactly how long this surgery would take, but we knew it would be on the longer side.
Evanna went into surgery at 7:30am and we left for breakfast. We came back around 8:30am, and the wait began. When we passed the 5 hour mark (which is how long her original open heart surgery took), my anxiety hit an all time high. I know this was a more complex surgery, but it still wasn't technically OHS.
Finally at 2pm (6.5 hrs), Dr. Rebeyka came out to tell us that it went well. He said it took him a lot longer then he thought, but he was generally happy with the results. He was able to widen her upper left collateral, and when he took the clamp off, her O2 immediately rose by 8 points, which was a very good sign. He had to leave her bottom left collateral for now, but he hopes that once we get her home, it will grow on its own.
Dr. Rebeyka also resectioned her subclavian artery, which I guess was causing significant pressure on the back of her trachea. I am NOT trying to get my hopes up, but Dr. Rebeyka feels like she should extubate just fine now, and she may not need a tracheotomy at all.
Evanna still has tracheomalacia, so this is why I'm not holding my breath, but obviously I'm happy there is still a chance she may successfully extubate.
We still need to take this one step at a time, and I'm really trying not to get ahead of myself, but I just really hope this is the surgery that will get us on our way and let us bring our baby girl home.

Thank you for the the hundreds of prayers said on our family's behalf. I'm truly blown away by all the support we have received, and we have definitely felt everyone's love for our sweet girl.

xo The Irvine Family

Friday, December 5, 2014

PICU Day 58, 59, 60 & 61

So it's confirmed - we'll be in Edmonton for Christmas, but I'm totally okay with that. I'm just soo happy to be back here in Edmonton at the Stollery Hospital, with our favourite medical team and I will be more than happy to stay here for as long as necessary. Though going home was good, and needed to happen, it made me appreciate the PCICU here at the Stollery so much more. Yes the private rooms at the Children's hospital are awesome, being close to friends and family is great, and there is nothing like sleeping in your own bed - but I would gladly trade it all to be in the best place for Evanna.

They transferred Evanna up to Edmonton back on Tuesday. Just before they packed her up, the Calgary team decided to adjust her ET tube (the breathing tube) and pulled it out by half a centimetre. Well, anytime someone adjusts her ET tube, whether pulling it in or out, it ticks Evanna right off. So they ended up giving her a whole bunch of drugs to calm her down, and I guess things just spiraled down from there. They had to practically bag Evanna the entire plane ride here and her CO2 levels were close to 100 (which is incredibly high) the entire flight. Our nurse Liz said she arrived looking like complete crap. I arrived about 30 minutes after Evanna did, and I have to agree that she was not looking so good when I first saw her, and that she looked absolutely awful. Within a few hours, after the nurses and RTs fixed her, Evanna was back to looking her pink self and was much more content.

On Wednesday, Dr. El-Hakim performed a bronchoscopy to take yet another look at her airway. He said that while she still as Tracheomalacia, he definitely agrees that there are other contributing factors to Evanna's breathing problems (lung and heart), and that even if we go the trach route, that necessarily won't fix all of the problems and wouldn't get us closer to going home. The bronchoscopy didn't really provide a whole lot of answers, and even Dr. El-Hakim wanted to wait and see what the Cath results would say.
I was really glad to see Dr. El-Hakim - he is such an amazing ENT, and comes by often to check on us to see how we're doing. You can tell he generally cares for his patients and wants only the best for them.

Yesterday was the big day. Evanna's Cath was originally slated for 10am, but anaesthesia didn't come until about 12:30pm to pick her up. They decided to sedate her in the PCICU before transporting her down to the OR just to make sure everything would go smoothly. I went and grabbed lunch, and finally around 3pm, Dr. Won came out to talk to me. All 5 of her collaterals have narrowing, and some are worse than others (particularly her left side). They decided to hold off on ballooning and inserting stents during this Cath, as they want to do another surgery and would prefer to do that after, as there would be a risk of the stents moving during surgery.

So that's the plan - another BIG surgery. She has been scheduled to be the first case bright and early on Monday morning and they have a few goals they wish to meet. They will be going in through her left side and want to "patch" her left collaterals. This will hopefully help make them bigger, and enable more blood flow to her left lungs (which is currently sitting at about 25%). Then they want to move her aorta and subclavian, and provide more space around her trachea. From the looks of it, her aorta and subclavian are sandwhiching her poor little trachea. They'll do another Cath after surgery, in which they want to insert a couple of stents. Then they want to let her recover for a little bit, and give her another shot at extubation. Edmonton is a little more reluctant to teaching Evanna, and though she still may end up with one, they want to try every avenue possible before we're sure it's the right decision.

Evanna has been pretty much sleeping the whole day, and I feel it's going to be a very quiet weekend around here. I plan to maybe do a little shopping and buy a few things to decorate her crib with, and maybe find a few Christmas outfits/hats to put on her.

It's a little stressful knowing that Evanna will be having another major surgery in such a short span of time, but if it's what will help her little heart and her lungs, then so be it. Prayers for Monday would be greatly appreciated.

xo The Irvine Family

Monday, December 1, 2014

Holding Pattern

A recap of days 53, 54, 55, 56 & 57 in the PICU.

Just doing a small update before a bunch more days past us by. I was hoping that our next post would be coming to you from Edmonton, but we're still in Calgary. They originally wanted to transfer Evanna on Sunday, but in true hospital fashion, that didn't happen. Evanna is a priority, and both ENT and cardiology are wanting to see her as soon as possible, so the transfer is now happening tomorrow (it's all due to a very tight bed situation at the Stollery).

Other then today (she's been extremely grumpy and irritable for the past 36 hrs), we've been getting lots of smiles and cuddles in over the past week. We're anxious to move forward and past this "holding pattern" that we've been in for the past few weeks, and work towards getting Evanna home. While I've regained some patience knowing we're going to be in the hospital for months to come, nothing brings my impatience to the surface like a good ol' fashion delay.

On Saturday, Evanna turned 7 months old, and so I brought in a special headband to mark the occasion. It's been a little hard on me personally every time we pass her "monthly birthdays" in the hospital and it's a little kick to the stomach reminding me of just how long we've been in the hospital and everything that we're missing by not being at home. I never took a picture of her in her 6 month headband, but I think I was dealing with some denial at that point. I have days where I hate Facebook and Instagram, because it's an instant reminder of how abnormal our life is right now, and how "unfair" this has all been. I don't necessarily like writing and being so public about the negative and depressing feelings I've been having, but blogging this journey has been somewhat therapeutic for me, and I know I'll appreciate my honesty later in the future. For the most part I'm still positive and try to look at the daily silver linings, so please don't worry about my emotional well-being - we're handling everything relatively well.

Thank you so much to everyone that fasted and prayed for our family and little Evanna yesterday. We definitely felt all the love and support from everyone, and we appreciated it very much.

xo The Irvine Family

Wednesday, November 26, 2014

Back to Edmonton we go!

A recap of days 49, 50, 51 & 52 in the PICU:

Sunday and Monday were pretty quiet around here. The phrase of the week has been "keeping things in a holding pattern" as we await to see what Edmonton had to say. On Sunday, I got to hold her for a few hours, and as my Facebook friends read, Evanna smiled at us for the first time in 7 weeks on Monday! It was such a tender moment for Nick and I, as we got a glimpse of the old Evanna and see our happy baby girl.

Tuesday was the big day, as we finally got to hear what the medical team in Edmonton wanted to do in regards to her heart and respiratory problems. It was an unanimous decision that a Cath needed to be done sooner rather then later to get a full picture of her heart and possibly see what could be done about the collaterals on the left side. Things "seemed" to be a bit more positive from that aspect, but I'm still consciously aware of our reality and that we may not hear things we will necessarily like.
The thing up for debate is whether or not another kind of surgery will be beneficial for Evanna. They're wondering if maybe her aorta is slightly compressing on her trachea, making the Tracheomalacia worse. It's a procedure we won't necessarily see immediate results, and EVERY surgery comes with its risks and benefits. Evanna is still getting a trach, but this procedure could help things in the long term in that she may not need it for as long. It's called an aortapexy, and basically they would go in and "pin" her aorta to the sternum to lift it off her trachea. So while they do her Cath, the ENT specialist will go in and do another bronchoscopy to see if he can see anything that might be pressing on her trachea making the Tracheomalacia worse.

So for the next week, we are continuing with this "holding pattern" in keeping her stable and happy until the transfer back up to Edmonton (this will be her 3rd plane ride) next week for her Cath and bronchoscopy. If they decide to go ahead with the aortapexy, we could be in Edmonton for another month, and then back down to Calgary for the tracheostomy.
I've come to the realization that hospital life will be my reality for quite sometime, and because of that, I've been handling hospital life a lot better and not being so emotional when it comes to thinking how long we've been in the hospital, and how much longer we have yet to go. Going back to Edmonton is very bittersweet because we already know the team up there, and I'm actually excited to see some our favourite intentivists again. It definitely sucks that I have to pack again, and relocate to another city, but we have resources in place that make the blow a little less hard (our names are on the Ronald McDonald waiting list and it'll be good to see everyone again).

At this point Evanna is having a good day, and I even got some smiles again today! I am asking that for everyone willing and able, to join us in fasting for Evanna this Sunday. Next week is a very big week with lots of important tests and discussions happening, and we need all the prayers we can get. So prayers, prayer circles/lists, good thoughts, whatever you do to get through a hard time are welcome and appreciated.

Thank you from the bottom of our hearts and Evanna's special heart,

xo The Irvine Family

// This stunning pink headwrap was made by @noxxaz (an Etsy shop) and graciously gifted to us by Instagram follower @margaret_font
xxoo Thank you so much! Again the generosity and kindness bestowed upon our family during this time has truly been overwhelming in the best way possible!

Saturday, November 22, 2014

Another Intubation, New Plans and Bad News

My heart is absolutely broken. I'm devastated and starting to loose a little faith and hope.

They had to reintubate Evanna late on Monday night. Her heart rate was very high, her oxygen levels were consistently dropping and her CO2 levels were starting to climb. They were very scared that she was going to crash again, so they decided to intubate her before she got to that point again.

Over the past week, we've been going over what our  next step is going to be, and with 4 failed extubations, we're now facing the fact that Evanna needs a tracheotomy. It's been a major shock and took a few days to wrap our heads around it, considering this was nowhere on our radar just 4 weeks ago. We know this is a temporary option - but it will be a LONG TERM thing that we have to deal with. How long? Well respirology and ENT have said that it can take years for children to grow out of Tracheomalacia. This step isn't necessarily going to get us home super quick either. First there's the procedure, then recovery, and after that it can take MONTHS to tweak vent settings, train Nick and I how to care for Evanna, and then on top of that - setting up homecare. What is homecare? Well basically, for the duration of time that Evanna has a trach, care providers (generally nursing aids and LPNs) come over to our house and watch Evanna at night, so we can sleep. We have so much information being thrown at us, your head would spin.  
It definitely took us a few days for us to come to term with the situation, and while we're still processing the impact this is going to have on our life, we know that this will soon become our "new normal".

On top of all of this, they also decided to take a look at Evanna's heart and to see where she stood from a cardiac standpoint. On Wednesday they did an MRI, and while it showed that her bottom ventricles were doing better compared to last weekend, Evanna had had some significant narrowing in her collaterals on the left side and not very much blood flow into that lung. They're sending those images to Dr. Rebeyka and Dr. Rutledge in Edmonton to take a look, and they're going to discuss her next week at Tuesdays cardiac board meeting. Dr. Fruitman said that the narrowing is bad enough, that there is a possibility they won't be able to do anything about it (ie. balloon or place a stent into it). After some conversation, I asked her to be a bit more frank with me and what this means for Evanna's life. She said that at this point it's hard to predict her life expectancy, and we could be facing the fact that she's terminal (nothing in the immediate future, but something we may need to come to terms with).

So now what? Well everything is on pause until Tuesdays meeting with Edmonton. We need to see what Dr. Rutledge (she performs the Cath) says and determine what order to do things in. Do we go transfer Evanna back up to Edmonton immediately to do a Cath and then back to Calgary for the tracheotomy, or do we proceed with the trach and hopefully a Cath can be done in the next few months.

It's been an incredibly hard week for us and there are just a lot of unknowns and new plans that have been thrown our way. We'll know more after Tuesday and I just hope there is something they can do for her heart. In the meantime, I had them switch our her oral intubation tube for a nasal one so Evanna could at least have her soother back (it was the least I could to do - poor girl deserves a break). She also got her 6 month immunizations and the flu shot.

xo The Irvine Family

Sunday, November 16, 2014

PICU Day 39, 40, 41 & 42

I could just cry when I see that we're into the 40s in regards to how many days we've been in the PICU, and we're not really that close to going home. We're making progress, but it's so incredibly slow, it's almost gut wrenching.

Evanna was extubated on Thursday around noon, and handled it very well - just like I knew she would. The intentivists were very impressed with her, and happy with her breathing on BiPAP. They actually put her on a newer type of BiPAP/CPAP called NAVA, that is really cool. Basically they put an NG tube down into her diaphragm that measures and senses the type of breath Evanna is taking, and the machine delivers the amount of oxygen that she needs. As humans, we don't always take the same type of breath each time. Sometimes we take long and deep breaths, and at other times, we take short and quicks breaths. The regular BiPAP machine delivers the same breath all the time, but the NAVA caters to what Evanna wants and needs with every breath. It will even signal when she needs less support, decreasing its support automatically.

Evanna had a very good Thursday night and Friday morning, but things quickly changed and I got a good reminder that this rollercoaster ride we're on, is far from over. On Friday afternoon, Evanna had a very high heart rate, but because she had no other signs of withdrawal (high temp, agitation, etc), and her feet had a blue tinge to them and were very cold, they were very sure that something was up. They also noticed her liver was enlarged, so they quickly called for an xray and ECHO. The xray showed nothing, but the ECHO showed that her right and left ventricles had mild to moderate decrease in function. They started her on a drug called Milrinone to help with the squeeze of her heart (it does a few other things, but sometimes all these drugs go over my head). They also decided to start her on a low dosage of epinephrine, but as soon as it hit her body, her heart rate jumped up to over 200 beats per minute and I screamed for our nurse to turn it off (our nurse that day was awesome by the way). I was so scared that Evanna was going to code again, as she was doing some of the same things she did last time, just before she coded. They stopped the epinephrine and never turned it back on. They just kept her on the Milrinone, and waited to see how her body would respond to that. They said that if her lactate levels got high, we were automatically looking at ANOTHER intubation. It was an extremely stressful and high tense day for us. They were so worried about her crashing, that they had sedation and paralytic medications drawn up, the intubation cart near by, and even measured her for the ECMO circuit (this is a type of life support). Even the intentivist on for that day (Dr. Megan Mahoney), didn't leave work until she was satisfied that Evanna stabled out. Finally around 9:30pm, Nick and I finally felt comfortable with Evanna's improvement and progress, that we decided to leave and get some sleep.
I called twice during the night to see how Evanna was doing, but both times they said her heart rate was good and her lactate levels were still low.

Evanna had a very good day on Saturday. The doctors decided to pretty much leave her alone for the day and not really change much in regards to her medication. Nick held her for a few hours, and she enjoyed that very much! We had some friends come join us for lunch and hang out at the hospital, and Nick and I were even comfortable enough to leave around 6pm and go for dinner to somewhat celebrate my birthday (this will definitely be a birthday I never forget).

Today was a little rocky again, as her heart rate was a little high. Dr. Dickie (the cardiologist) came down to redo her ECHO from Friday to see if there was any improvement and during the ECHO he told me that her heart function looked better. He checked her liver and said that it too had improved, but because of her high heart rate, he decided the best coarse of action was to give her some more fluid (this helps with relieving some pressure off her heart). Evanna's heart rate remained relatively high all day, and I finally decided to hold her around 4pm. Slowly her heart rate decreased (down into the 130s!!), and Evanna is now in a very peaceful sleep.

They have mentioned that if Evanna continues to have rocky days, they may transfer her back up to Edmonton for another Cath to help get to the root of the problem. This is ONLY if she continues to not improve over the next week, that they'll take such drastic measures. As much as it would suck to have to go back to Edmonton (it would be such a step backwards), at least we know the staff there very well, and I do consider the Stollery our second home.

Overall, though Evanna is extubated, we still have a long way to go. The intentivists and cardiologists best guess as to why this is all happening is that her body is trying to get use to her "new" heart and "new" diaphragm. She was intubated for such a long time, and now that the support has been taken away from her, Evanna's body has to learn how to do all of the work all over again with newly arranged anatomy.

Thanks for continuing to follow our little journey,

xo The Irvine Family

Wednesday, November 12, 2014

PICU Day 35, 36, 37 & 38

Update, update, who wants an update?

This is probably the longest I've gone between updates, so I'm sorry to all of our loyal followers. 
Things have been pretty slow since Saturday, so I guess I just haven't felt the need to write anything. Other then Evanna still being intubated, the other major thing that we're dealing with is all of the weaning we have to do with all of the sedation and painkillers she's on. Her body is use to such hard and heavy drugs, that the weaning has to be extremely slow to avoid withdrawals. Heck, because of how slow we have to go, we may even go HOME on a weaning schedule (which is not unheard of). It'll definitely be weird picking up morphine at the pharmacy for a 6/7 month old!

In regards to my last post, things are definitely better here at the Alberta Children's Hospital. I guess I wasn't prepared for the change in culture that anyone would experience when you are transferred to a different hospital. Every hospital and unit has their own way of doing things and it just takes time to get use to it. On the flip side, they also had to get to know Evanna. She came from a different facility with a long list of issues that would be scary to any new team (especially a team that isn't necessarily experienced with cardiac kids), so they just had to get to know her.
In conjunction with all of this, I have to tell you about a tender mercy that happened on Saturday night after the terrible day I had here in the PICU, and then posted about it. In the middle of the nursing shift change, I looked out into the hallway from Evanna's room, and I see a nurse that I recognise from the Stollery. It took me a few moments to make sure I wasn't experiencing déjà vu, and reconfirm that she was indeed a Stollery nurse who has watched over Evanna in the PCICU after her open heart surgery. After confirming with our new nurse that the woman outside our door was indeed Donna, I walked out to talk to her. I started tearing up immediately, and told her what had occurred over the last 12 hours and my concerns with being at ACH. She told me that while I was correct in that the Stollery is an amazing hospital, with an amazing team of intentivists and nurses, Evanna was exactly where she needed to be, and she would receive excellent care here. She told me to give myself a few days to get use to the unit and staff here, and everything will work out. Evanna didn't need to be at the Stollery anymore, because she is stable from a cardiac perspective, and the Alberta Children's Hospital is more than capable of handling her complexity. Donna was the direct answer that I needed to the many prayers I had said that day.

The last 4 days have mostly consisted of drug and ventilator change ups to prepare her for extubation tomorrow. Most of the harder medications have been transition to oral, which will make it easier to wean in the long run. Due to Evanna having 3 failed extubations (though I don't count the last one as a fail as she was extubated for 4 days before she coded), they are just super paranoid to doing a fourth extubation, and have been holding off for as long as they can.

Other things to take note of, is Evanna did have a head MRI on Monday. Not exactly sure why they went to this extent, but I guess they want to dot all their i's, and cross all of their t's. They also haven't taken out any lines since we got here, but that's because they don't want loose any access in case she were to fail extubation again.

I've gotten into a new routine since being back, and though Evanna is still in the PICU, we've still made dinner plans for this weekend for my birthday and a fun girls night this coming Monday.

Thanks for all of the support,

xo The Irvine

Saturday, November 8, 2014

PICU Day 33 & 34

So a part of me is regretting our transfer back to Calgary. I know everyone is going to be surprised to hear that, especially after fighting so hard to get "home", but hindsight is always 20/20.

Evanna is still stable (something that I have to constantly remind myself when we're not moving forward at the pace I would like), but things aren't necessarily going the way I had hoped. 
We were transferred under the impression that we had a straight forward plan, but the plan isn't necessarily being followed, so it's been a frustrating day for me. I thought being here in Calgary would be such a huge step forward, but in reality, it's not. Evanna is a new patient to them, and to them - the past is the past. They want to run tests they've ALREADY done in Edmonton down here again and I'm learning real fast how different each intentivist is. I'm all for new ideas, but not when it doesn't make a whole lot of sense. I'm quickly seeing that they don't have a whole lot of experience with cardiac/22q kids, and her medical history can definitely pose as very scary situation to a new team.

I'm definitely feeling extremely guilty for pushing for the transfer and even regretting my decision. We had built such amazing relationships with the team up there, and they are definitely more experienced when it comes to dealing with babies like Evanna. I'm sure once they get to know Evanna, and we get more comfortable at ACH, things will get better, but the transfer definitely hindered Evanna's progress, and it will take me a little while to get over that. 
Yes, it's great to be a bit closer to home, and be near our supports, but I'm thinking at what cost? A few people tried to kindly warn me of the differences, and I wish I would have listened a bit better. Overall, I'm just REALLY missing our Edmonton medical team.

Not much has happened (in my opinion) since the transfer. They're still working on weaning her sedation. This is taking such a long time, but it's because Evanna has been on such heavy and hard drugs for an extended amount of time, so her body is use to them. Yesterday they were talking about a Sunday/Monday extubation, but the intentivist on today was hinting at a much longer intubation (like 3-4 weeks). This is where I am having major issues, and will be bringing up my concerns to the intentivist on tonight.

They're giving Evanna another transfusion today to get her hemoglobin up, as Evanna requires higher hemoglobin levels than a normal person, so her body receives more oxygen while she still has a VSD (hole in her heart). They are continuing to work on weaning her sedation levels, and doing different things to get that right upper lobe in her lung to open up. We'll see what the next few days bring, but I'll be definitely fighting to get them to extubate her by the end of the week, as I am NOT in board with keeping her intubated any longer then that.

xo The Irvine Family

Thursday, November 6, 2014

PCICU Day 31 & 32

We're back in Calgary!!

Evanna was transferred from the PCICU at the Stollery Children's Hospital in Edmonton to the PICU at the Alberta Children's Hospital in Calgary yesterday afternoon, and for the first time in over a month, I got to sleep in my own bed.

Yesterday, the Calgary transfer team ended up picking her up, and because their plane is a little smaller, I had to drive down (which wasn't a big deal, and just meant one less trip that Nick would have had to make to go pick up my car).
The transfer team arrived around noon, and slowly packed her up. It was quite the ordeal and took almost an hour for them to pack her up and leave the Stollery. It was definitely bittersweet leaving Edmonton. We built such amazing relationships with the staff at the Stollery, and we're definitely going to miss them. We loved all the intentivists, surgeons, nurses, RT's and social workers that we dealt with. They kept the picture we hung on her monitor and made us promise to come visit when we go back to Edmonton for her Cath in a couple of months.

The transfer went really smoothly, and she was either asleep or awake keeping a watchful eye on the nurse, RT's and Paramedics, but overall she was very content. The nurse even texted me a few pictures of her on the plane, which I greatly appreciated.

I arrived to ACH about an hour after the transport team did (they may have commented that I made very good time....), and after Nick's mom and sister visited (with a cheeseburger in hand), I decided it was time for me to go home, as I had been up since 5am that morning. It was strange walking through my front door, but the moment I hopped into my bed, I felt right at home.

This morning we took our time getting to the hospital, as we wanted to enjoy and take advantage of some alone time in the comfort of our home. When we arrived they had already done rounds, and we found out that the goal of the day was to start weaning and mainstreaming her medications to more manageable and appropriate dosages. They had to retape her intubation tube, so that made her very angry. Finally after some sedation meds and Evanna maneuvering herself into a horizontal position on the bed, she settled out, so they decided to leave her the way she was (it was actually pretty funny).
Evanna had and another ECHO done, and our friend Whitney came for a quick visit with some yummy snacks (thank you!!). This evening they weighed Evanna, and then transferred her to Nick's lap. So for the first time in 31 days, Nick got to hold his little girl.

The next few days will consist of continuing to lower her sedation medication and visitors galore (just shoot me a text if you're wanting to stop by). Hopefully they can extubate her this weekend and work on weaning her oxygen support.

xo The Irvine Family

Tuesday, November 4, 2014

PCICU Day 29 & 30 (Mama Bear)

So as my Facebook friends saw, I hit my breaking point yesterday when Evanna's plication (pinning down of her diaphragm) surgery got bumped from yesterday to today. It wasn't even about the bumping, it was them bumping us from last case yesterday to last case today that made me furious.

Yesterday was a pretty calm day. Evanna mostly slept, and Dr. Rebeyka came by to have me sign the consent form. They had 3 cases that day (open heart surgeries), but we were still hoping that they would get to Evanna, because of how easy and simple her procedure was. However, around 2pm, Dr. Rebeyka came by to inform me that they were not going to get to her, and we were going to have to wait another day. I asked him what time to expect her surgery to take place, and he responded in saying he wasn't sure, and it probably wouldn't happen until the afternoon. He did however state that they only had 2 cases today, and so Evanna's surgery would definitely get done. 
It took me about 10 minutes to digest the information, and once I did, I started to get extremely upset. I ended up leaving the unit and had to go for a walk to try and cool down. After coming back, I was still angry - so I didn't stay too long before heading back to the Ronald McDonald House to get a break and try to calm down. 
Back at the house I decided to try and distract myself and do what I could to take my mind off things. Finally around shift change, I decided to head back to the hospital for night rounds and see Evanna. I was surprised at how angry I still was and definitely talked to the staff and Dr. Garros about my concerns and try to come up with a solution. I decided to make it an early night, because I planned on coming back the next day at 6am to catch cardiac rounds and talk to them directly.

The next morning, I got up extremely early and got to the hospital at 6am like I said I would. The nurses that were still on stated that they were rooting for me and the mission I was on. Finally around 7:30am, cardiac rounds showed up, and after they discussed Evanna, I asked if she was going to be the second on third case of the day. When they responded that she would most likely be the third case, I decided it was time to bring up my concerns. I expressed that we were still hoping for a Calgary transfer on Wednesday, so to be fair to Evanna, the earlier her surgery could be - the better, as it would give her more time to heal. I expressed that we've been here for over a month, and we are ready to go home. Evanna has been intubated long enough, and I want her extubated as soon as possible so we can hold her again. Dr. Rebeyka said Evanna was his only case today, so no matter what, she was having the surgery, but the OR time wasn't really up to him, because it was Dr. Ross's OR day and his cases.
They left, and I wasn't sure so of the impact I had made, but about an hour later, a nurse came over to tell me that Evanna was now going to be the second case! I was so ecstatic and happy that things were finally going my way.At rounds Dr. Ryerson confirmed the switch and said we were very lucky Dr. Ross was so willing to let us squeeze Evanna between his two cases and I owe him a bag of Doritos (which I complied too with a thank you card). After rounds, I left to grab a bit to eat, where I ran into Dr. Cave and Dr. Duff in the hallway where they stopped to tell me how proud they were of me for speaking up and advocating for Evanna. They said it was pretty brave of me, and I pretty much just did their job lol.

Evanna went in for surgery at 12:30pm, and Dr. Rebeyka came out just after 1pm saying everything went well, and that Evanna would be out soon. Social work also found me in the hallway and stated they had heard about my little "speech" and asked if I needed anything else. Dr. Horn (Dr. Rebeyka's right hand surgeon) also found me in the hallway to ask if I was okay. I guess I was taken back by all the attention I was receiving, and surprised at the impact I had made for just expressing my concerns (in a mature manner) at cardiac rounds. I guess they just aren't use to parents speaking up like that, so they knew I was a bit angry and wanted my concerns addressed.

Evanna handled the surgery very well, and after she was back on the unit and settled, I decided to leave to run some errands and go back to the Ronald McDonald to pack a few things up.
Tonight Evanna is still doing very well. They did up her pain medications by a little bit (from what she was on pre-surgery) and she has a drainage tube again. She did have one angry episode, so they had to give her a few more shots of pain meds and sedation, but other then that, she's been a little trooper.

Tomorrow we are hopefully continuing with the plan of transferring Evanna back to Calgary. So far all systems are a go, but Evanna needs to have a good night and Calgary still needs to have a bed available (though they are ready and willing to accept us at the moment) before we get the official green light.

Thanks for following along,
xo The Irvine Family

Sunday, November 2, 2014

Another surgery and possible transport

So we have a plan, and though another surgery will be involved, I am happy with it nonetheless. 

Saturday was a busy day full of LOTS of talk and planning. Evanna had a bronchoscopy booked, but depending on those results, we had to decide what the next step would be. It has been pretty much decided that Evanna's cardiac arrest was most likely due to a build up of secretions and mucus that blocked the airway. Though they can't prove it, it's honestly the best answer they have, because every test they've done hasn't proved otherwise, and you should of seen the amount of oral secretions that Evanna produced while she was on BiPAP.

Evanna was kind of restless all Saturday morning and I felt terrible that I couldn't just pick her up and take her home. She was still orally intubated (meaning the breathing tube went through her mouth), and so I couldn't give her a soother to keep her calm and relaxed. They had stopped her feeds at 3am, so I was really hoping the bronchoscopy was going to happen earlier in the day. At 3pm, anaesthesiology finally came and got Evanna, and I politely asked that when they extubate her to do the bronchoscopy (they have to take the breathing tube out so they have a space to put the camera down her trachea), to do a nasal intubation instead. They said they prefer nasal intubation with babies anyways, because the tube doesn't move as much, and it's more comfortable for them. The only reason she had had a oral intubation was because they had to intubate her as quickly as possible when she coded on Monday night.

After the bronchoscopy Dr. El-Hakim said he couldn't find anything wrong. No web or granulations had grown back, and while she still has tracheomalacia, it hadn't got worse. His best advice was to go ahead with the plication (which means going in and "pinning" down her diaphragm) of Evanna's paradoxical diaphragm to give her the best chance of a successful extubation.

Nick and I were now placed with a choice: Either extubate Evanna on Sunday or plication (surgery) of Evanna's right diaphragm on Monday.
If we were to extubate today (Sunday), we would slowly try wean her oxygen support over the next few weeks in Edmonton and hope that a surgical intervention wouldn't need to take place. However there was a big possibility that her diaphragm wouldn't heal on its own, which means that we would be right back where we started - having to do the plication anyways, and wasting weeks in hospital. Some other things to consider is that the plication HAS to be done in Edmonton. This is because it can't be done by laparoscopy (the normal method) because of the uniqueness of Evanna's heart anatomy. They are scared that they would run into trouble if the scope touched one of her collaterals, so the surgery has to be done through the abdomen (ie. Evanna gets another lovely scar). That's why they also wouldn't send us back to Calgary to work on weaning oxygen, because if they figured it wasn't working, they would be sending us back to Edmonton anyways. Other problems we could face is due to the fact that we're still in an ICU, Evanna has a huge risk of getting another infection, and lines (which are also prone to infections) are still in Evanna.

The other option that I stated was to not extubate Evanna today, and go ahead plication on Monday, and transport Evanna while she's still intubated to Calgary (its safer to transport her while still intubated) a few days later if Calgary willing to accept us, and wean her oxygen there. Evanna basically has three problems contributing to her extubation issue: 1) Her right upper lobe is still collapsed, and they're sure the only thing that's going to fix it, will be a good cry from Miss Evanna 2)tracheomalacia, and this just takes TIME to heal and 3) right sided paradoxical diaphragm. They're thinking is if they could take away just one of these issues, we're setting Evanna up for a successful extubation.

It was a little hard trying to make the decision. Do we be patient and let Evanna try to wean on her own (with a BIG possibility of ending back where we started), or do we go the more invasive route and do surgery right off the bat? Dr. Rebeyka (our cardiac surgeon) and Dr. El-Hakim (the ENT specialist) were both for surgery, while our intentivist (Dr. Ryerson, Dr. Duff and Dr. Cave - whom I asked that they call and get his input), were initially for the wait and see plan. However, as the day wore on, and the results of the bronchoscopy came back, talks turned more and more to doing the plication on Monday.
After one final talk with Dr. Duff, we finally landed on our decision to do surgery on Monday. Today, we have let Evanna rest and get things ready for tomorrow's surgery. Now please note - this surgery is NOTHING compared to her open heart surgery, so I'm really not worried. It's a quick in and out procedure, and hopefully we can be on our way to Calgary later this week if they accept us.

Prayers for an easy and successful surgery tomorrow, and a smooth road to Calgary please!
xo The Irvine Family