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