Friday, October 31, 2014

PCICU Day 24, 25 & 26

Heart Headband courtesy of NOXXaz
Sorry for the minor delay in posting, especially considering the last post - I just sometimes like to wait until we have more answers before I fill everyone in. Things can be so hour-by-hour here, and so I like to wait until we know for sure what is happening - otherwise my posts would seem all over the place. Plans and decisions change all the time, especially if a test was done and the results call for more texts or a whole new direction is needed. Sometimes it can just be a difference in opinion between the intentivists that can also cause things to change quickly, so for clarity purposes, I like to wait a day or two in between posts, especially because this recovery has gone a lot slower than initially planned.

They did an ECHO Tuesday night (day 23), and an ultrasound of the head and abdomen Wednesday morning to make sure nothing was affected from her cardiac arrest. Everything came back with good results and no harm was done. Evanna was back to her normal antics of being a difficult, and they have to use soft restraints to help avoid her pulling out the breathing tube. When she wakes up - it's with a bang, and it takes a lot to keep her calm (she's definitely a natural red head).

Thursday was an extremely busy day. They took out her catheter (for the second time) and reduced some medications. At first we just had a diaphragm ultrasound booked, but radiology called saying they could do the CT right away, so she got that done right away as well. The CT came back with normal results, but the ultrasound showed some interesting results. It looks like Evanna has a paradoxical diaphragm (this just means the diaphram moves in opposite direction that its suppose too), but because it's only been a recent development over the last few days (according to xrays), they're not sure if they're going to do anything about it. Normally they would go in and "pin" down the diaphragm, but because of Evanna's MAPCAs, they will avoid it if they can. They want to do another bronchoscopy to see if there are any other issues before deciding that another surgery is worthwhile.

Today, Evanna has been extremely calm and content. She's pretty happy just as long as Nick or I are holding her little hand and rubbing her forehead. She was suppose to have the bronchoscopy, but in true hospital style, it just got bumped to tomorrow morning (so they've just restarted her feeds AGAIN, and will stop them at 3am tomorrow in hopes that the procedure will proceed). Once we have those results, I am hoping they can extubate Evanna within 24hrs.

It's been a rollercoaster of emotions over the past few days. I get many compliments of how strong I am, but I have to confess that I have moments where I am in complete frustration and agony over what has transpired. I'm pretty good at keeping my emotions in check and bottled up when discussing Evanna's situation with doctors, but tears will stream down my face the moment they leave. I am beyond belief that we are still here, and there are moments where I feel like this will never end. Everyday in the hospital seems like three, and it's worse being stuck in a different city that isn't home. I miss my bed, I miss my friends and family, I miss my kitties, but most of all - I miss family cuddles in the comfort of our bed.

Many people ask what they can do for us, and honestly, just saying that we are in your thoughts and prayers is more then enough at this time. I'm sure we'll have weeks of dinners provided for us the moment we get home, and visitors galore the minute we touch down in Calgary. I guess I would just like to say to please be grateful for everything you have and cherish your rambunctious children running around your house causing mayhem and havoc. Pick them up, hug them tight and kiss them from head to toe. Please know how lucky and blessed you really are and don't take any moments for granted.

xo The Irvine Family

Tuesday, October 28, 2014

Code Blue

Evanna coded last night.

She's stable now, but we're now dealing with some set backs and she had to be reintubated.

Evanna had been extremely stable all day long on Monday. I came in around 8:30am, and she had been apparently a little grumpy for the last little while. She soon dozed off, and pretty much slept the whole day. They decided that because her femoral artery line wasn't working anymore, to just take it out, and to discontinue all the blood work. They also discontinued some of the IV meds she was on and convert them to oral ones. They called Calgary and other then a test on the transfer BiPAP, all systems were a go for a transfer later this week.
I got a good afternoon cuddle in and held her for almost 3 hrs. After supper I came back, and ended up staying until about 10:30pm because I was having a good conversation with Evanna's nurse. I went back to the Ronald McDonald House, and after catching up with some things on the computer I finally went to bed. At 12:50am, my phone rang. The nurse on the phone said that Evanna had coded and that Dr. Aditia needed me to come right away to the hospital. I had her repeat what she had just said, because it took me a minute to register what she was actually trying to tell me. 
I jumped out of bed, and for some reason I was having a hard time pulling myself together to put some clothes on. After I changing, I drove as quickly as I could to the Stollery. While driving, I called Nick (who was currently working back in Calgary), to tell him what had happened. I parked in Emergency and ran like hell to the PICU. When I got there, there was initially about 40 people standing in and around her bed. Dr. Aditia was trying to intubate Evanna, and a nurse (later found out her name was Andrea) was doing chest compressions. I stood in complete shock. I heard someone say that the ECMO team was on standby and it was ready to go (at this point Nick decided to leave work and head to Edmonton immediately). Evanna's nurse (Megan) came over with tears in her eyes and held my hand while watching them work on her. 
Finally the nurse that was doing chest compressions stated that she had a heart beat and that it was strong (which allowed me to breath a small sigh of relief). They got her somewhat intubated and starting putting some lines back into her. They kept telling me that every time they pulled blood gases, the results kept getting better and better, so that was very reassuring. They ended up calling in a special pediatric anaesthesiologist to come intubate her with a bigger tube that would fit her better (it ended up being the same anaesthesiologist that she had back in July when she had her Cath), and he raced over to the hospital to do it. Slowly as things calmed down, the crowd around her bed dispersed. A few nurses were around to continuously draw up sedation and paralysing medications, and mix up IV medications for the pumps. They decided to cool her body a little bit (they kept the range between 33-35°C) to help her body recover a little bit, and just let her little body rest for a little bit.

Nurses were constantly coming up to me to see if there was anything I needed. I was given a warm blanket, water and juice whenever I asked, and one of the residents (Gabriela) that I was very familiar with, came over often to keep me informed on what was happening. The whole ordeal was very surreal, and at moments - time seemed to freeze or go slowly, and at other times, things happened extremely fast.
The space was cleared up (particularly the ECMO pump was taken away) and they offered me one of the parent rooms to crash in. I laid down in there for about 30 minutes before I got a text from Nick saying that he was here. I met him in the hallway and showed him to Evanna's bed. Nick was definitely a little worse for wear and quite speechless. After some time, we eventually left for the Ronald McDonald House to get some sleep, as we were both emotionally and physically exhausted and in a much needed break from the hospital.

This morning I finally made my way to the hospital just before 11am (though I did call the unit twice earlier this morning to check up on her, but both times they said she was stable), and rounds had just left. They still don't have an exact rhyme or reason as to why this happened, but definitely leaning on the respiratory side. Some guesses is that either she had a build up of secretions that didn't clear causing a blockage in the airway or that she experienced a laryngospasm.
They're doing an ECHO and Ultrasound of her head this afternoon just as a precaution and make sure everything looks good, as well as have ENT come and take a look at her.

Overall, we're still waiting for some answers, and once we have answers, hopefully a NEW plan towards getting home will be created. This is definitely a HUGE step back and big blow, but at the same time we realise it could have been a lot worse (so we've been told), and she was in the best place possible for this to happen (an ICU at the Stollery). We were so close to coming home and had everything set up for a Thursday transfer to Calgary, so I'm definitely a little heartbroken. They said she stabled very quickly, and are just keeping a close eye on her.

Like always, lots of prayers are needed at this time.

xo The Irvine Family

Sunday, October 26, 2014

PCICU Day 20 & 21

On Saturday morning, I came in and was told that Evanna had an excellent night. Her chest (particularly the right lung), continues to look better, and the little rash that developed under her chin this past week has begun to clear up nicely. They also took out her left femoral line, which leaves Evanna with only two IV lines in her now (the PICC line in her right arm and the arterial line in her right leg/groin area). Dr. Duff decided to lower her BiPAP settings and she handled it like a pro. I held her again, and within minutes she was fast asleep into a deep slumber. So deep, that he oxygen levels started to drop a little, but after I repositioned her, it quickly jumped back up again. Later in the evening Dr. Duff came by again and decided to not wait until Monday, and switched her to CPAP. She did really well, and I just loved how much quieter our little corner of the unit became.

This morning I came in a little later (Sunday mornings tend to be really slow around here, so I take my time getting to the hospital), and found out they had just switched her back to BiPAP. While she had a really good night, her little body was really tired and was having a hard time breathing again. So they switched her back and letting her lungs, airway and diaphragm rest a little bit. 
Around lunch time they finally took out the stitches in her chest and did another dressing change. Throughout the day, whenever Evanna was awake, I would sit her up until she's to tired. I'm trying to help her lungs drop and regain her strength, plus I know she likes the position change and looking around a little bit (though she's still a little drugged up, so it's hard for her to concentrate on anything).

The plan is to let her rest for the day, bring down the BiPAP settings and call the Children's hospital in Calgary tomorrow to begin the transfer process (my nagging is working like a charm! lol)

xo The Irvine Family

Friday, October 24, 2014

Extubation - FINALLY!

 I know the mask looks more intense than the intubation tube, but trust me when I say this is such a major step forward to getting discharged and being home

So here's a recap of days 17, 18 & 19 here at the Stollery. 

The original plan was to put a PICC line in on Wednesday morning and extubate later in the evening. Well, Evanna didn't end up going to the OR for the PICC insertion until 2pm, which meant that she came back asleep and sedated, so an afternoon extubation was off the table, and the earliest they would consider doing it was not until at least 8pm. Well during evening rounds, intentivist Dr. Ryerson said that because of Evanna's collapsed upper right lung and her fluid balance being more on the positive side, she wasn't overly comfortable in extubating that night (and they also don't like doing extubations at night in case something happens). So they upped her diuretics to "dry her out"  and let her rest for the night.

Thursday morning we came in and we had just barely missed rounds. The intentivist that was on, was one that we hadn't seen before and so I was a little apprehensive about how the day was going to go. They said they were thinking of extubating around 2pm because they hadn't stopped feeds until 8am. So Nick and I left to file some paperwork with Service Canada (because of all of this, we're eligible for PCIC – another form of EI, meaning I won't have to go back to work until later this summer to help care for Evanna and give me more time at home with her). We came back after lunch, and the waiting game began. 2pm came and went and the intentivist was nowhere to be seen. Now, I know I am not a patient person, but this journey has taught me a lot of patience. I am getting use to “going with the flow”  when a CT or procedure gets delayed by a day, and I know that “hospital time” is different altogether, but we have been waiting for Evanna to be extubated for a long time, and the ENT specialist had given us the all clear Tuesday night. So at 2:30pm, when they were beginning another procedure on another patient and they ended up closing the unit (this happens at least once a day), meaning that Nick and I had to leave, and I began to break down. I understood that the PCICU was a little busy that day, but I wasn’t impressed with the fact that the intentivist and his resident hadn't been by to update us, and let us know the game plan. I expressed my anger and frustrations to our nurse, and she agreed and sympathized with what I was feeling. I felt like because the intentivist hadn’t been on while we’ve been here, he really hadn’t been on this emotional journey with us and understood everything we have been through. I’m sure he read and was told what has transpired over the past few weeks, but because he hadn’t been here, we didn’t have that relationship that we have built with the other physicians. We left the unit as we were told, but I left in tears. I was so done with everything, and I was sick and tired of Evanna still being intubated. I wanted her extubated, to stop seeing babies/kids come and go while we remain, and I was done with having things being put off.

We went out to the car so I could vent in private, and once I cooled off, we headed back into the hospital. We were met by the resident who said that while Evanna is ready to be extubated, they were also waiting for her to wake up. We went back into the unit, and the intentivist came by to also talk to us. By that time, it was almost shift change for him, and Dr. Vijay Anand was about to come on. Basically, it became clear that this was not happening for a few more hours, but I was happy that a physician we know and trust was going to be there when it was done.

Evanna started to wake up a little bit around 7pm (nurse shift change), so once orders were passed over, they decided it was finally time to extubate her. It went relatively smoothly and though she fought the mask a little bit in the beginning, she settled out and fell asleep. Her blood gases came back with great results, so it FINALLY looked like this extubation was a success.

This morning Nick left for Calgary, and I went back to the hospital. She had a good night, and was even moved to the “overflow” area  - where they put all the kids that are more stable and require less attention. They put her back onto full feeds, and they are slowly working on weaning the rest of the medications that she is on. They are pulling out another line tonight (her left femoral one), and are slowly working at changing her meds to oral ones. The biggest thing today, was I GOT TO HOLD Evanna for the first time in 17 DAYS.  We cuddled for about two hours, and she fell asleep in my arms once we found her a comfortable position. It felt so good, and I just know that she was happy too. She was always looking at me, and had her little fingers curled around mine. She even reached her arm up so she could put her fingers in my mouth (something she likes to do when we are at home). I can’t wait to do it again, and I look forward to when we are 100% oxygen free.

For tomorrow, I plan on having them bring down a swing for her, because I know she will just love that, and getting some more cuddles in! Some goals for the weekend is to lessen the support she is receiving on the BiPAP machine as she can handle it, and maybe even be on CPAP by Monday. I am also aggressively pushing for a Calgary transfer by the end of next week, but mentally preparing myself for two more weeks here in Edmonton. Most of the intentivists are on board with this idea, but they just want her to be at a point where she can go more than 2 hours without the BiPAP or CPAP before they consider her stable for a transfer. I called our cardiologist in Calgary, and at Tuesdays board meeting, they are also going to push for a transfer to get us home. 

Anyways, it’s been a long few days, and though we had some rough patches (most of them having to do with certain staff members), we are still moving forward at a nice pace. Now that Evanna is extubated, I just know things will speed up from here.

Thanks for following along!

xo The Irvine Family

Tuesday, October 21, 2014

PCICU Day 15 & 16

So it's been a quiet, yet busy couple of days. They did the CT yesterday and after waiting hours for the results to come back, it came back saying everything looked good with her heart and lungs. There was no pressure from her sternum pressing onto her conduit and blood flow to her lungs looked great.
This was definitely a relief, as it was time for the good news to start coming and I don't want anymore roadblocks stopping us from moving forward and eventually getting discharged. For the rest of the day, Evanna was either sleeping or wide awake looking around and kicking her legs as hard as she could. She definitely likes to keep an eye on the nurses and is very watchful of everything they do. I had them bring up a mobile and attach it to the crib. Though she fights hard to stay awake, the wave noises on the mobile help her fall asleep, and eventually her heavy eyelids get too heavy.

Evanna's second bronchoscopy was booked for today, and I was told they wanted to do it before 5pm, as Dr. El-Hakim wanted it done while the right staff were there. At about 3pm I began to think it was going to be pushed to tomorrow, just like everything else, but at 3:30pm they were ready for her. I quickly left to pick up Nick from the greyhound station, and by the time we got back to the hospital, they were walking Evanna down to the OR.
The procedure went much quicker, and Dr. El-Hakim came out with decent news. The "web" that he had to break through last time hadn't grown back, there was barely any granulations to be seen. The swelling has decreased significantly in the trachea, and overall he said that Evanna was in a good position to try extubation again, and was hopeful that it will work this time.
They also took out Evanna's head IV this evening, and I was able to put a headband on her. I know it's something silly to be ecstatic about, but I miss being able to dress her up and put her in adorable outfits.

So the plan is to have Evanna rest for one more night, continue the steroid drops and try extubation tomorrow afternoon to BiPAP. They want to put a PICC line in tomorrow morning so they can take out her internal jugular line, as it's been in for too long and they don't want to risk infection.

Overall it's been a good couple of days. Nick is back and I'm "cautiously optimistic" about tomorrow. I miss holding my baby (it has now been 15 days since I've held Evanna), and this will be a major step to us going home.

xo The Irvine Family

Sunday, October 19, 2014

Answers & Longer Hospital Stay

So the bronchoscopy was originally suppose to happen Friday night, but it ended up being bumped to Saturday morning. This was fine because I would rather the ENT specialist be of fresh mind when he went to perform the procedure, then be tired and try his best to do her as fast as he could so he could go home. On Saturday morning when I came in, Evanna was wide away and just going to town on her soother. She has also remembered that she has legs and likes to use them to let me know that she is not a happy camper. I just know she's trying to tell me that she's not down with this laying down business and wants to sit up. Poor baby girl.

So around 10am they came and took her down to the OR. Dr. El-Hakim (the ENT specialist) came out and asked if Evanna had had FISH testing done, I said stated that she did, and she has 22q11 (DiGeorge Syndrome) and that it should be in her file. He said that makes a little more sense and now he has a better idea of what to look for. 
It was a long procedure (well it felt like it took a long time!), and Dr. El-Hakim had some answers. He said Evanna has tracheomalacia and is pretty sure that's what's causing her extubation problems. What it means (and I'm only describing it the best way I understand) is that her trachea is smaller than normal. Basically when someone gets intubated, it always causes a little bit of swelling, so swelling plus a small/weak trachea means for an extremely hard time breathing on your own. They still want to do a CT Scan/Angiogram to make sure there are no other issues causing further problems, but it seems like they have the general answer.

So what does this mean? Well it just means the extubation process will be very slow and take some time. They first inserted a smaller intubation tube and start her on some steroid drops. This plus some rest and mild sedation (so she doesn't move too much, making the swelling worse), will enable them to extubate her. However, she will first have to be extubated to a BiPAP machine for a little bit, so she still has lots of support. Then eventually they can downgrade her to a CPAP machine, and finally high flow cannulas. This whole process can take weeks, so we are looking at about another MONTH in the hospital (cue tears here). I have talked to the intentivists and a heart mom friend, and once Evanna is completely stable from a heart standpoint, I’ll push for a transfer back to Calgary. Thankfully my heart friend gave me a tip and told me to involve Dr. Fruitman (our cardiologist) to help push it and make that process go quicker.
This news was definitely a little hard on me, and I'm still processing it. It's so physically and emotionally exhausting being in a hospital for this length of time and the thought of another month was a hard pill to swallow. I know we'll get through it. However because of this, I'm going to be very pushy in getting Evanna transferred back to Calgary as soon as possible. The PICU there is so much bigger and roomier, and not only will it allow me to go home as often as I please, but to also stay overnight and have my own space in Evanna’s private room. The PCICU up here in Edmonton is very squishy with multiple beds cramped into one room with very minimal space for us parents to be with our child.

Today Evanna finally had her last drainage tube pulled (yeah!!), so at least something happy happened. Again, they didn't give her any extra painkillers, and she barely flinched when he pulled it out. They still want to do a CT, and it was suppose to happen this morning, but just like everything else, it's getting bumped to tomorrow. My fingers are crossed for no more surprises, but I'll update when I know more.

xo The Irvine Family

Friday, October 17, 2014

PCICU Day 11 & 12

Evanna nasally intubated, but enjoying her soother
So Evanna stabled out again during the night after her failed extubation. Generally she mostly sleeps throughout the day, but she's having more and more periods of being awake and looking around and even looks directly at me. She's also starting to suck on her soother, and getting better by the day with holding it in. Sometimes she's almost angry that it's just her soother and not her bottle when she's not allowed any food because she's going in for a procedure.

Yesterday they finally took out her left JP drainage tube. When Dr. Horn went to go close it, he decided not to give her any extra painkillers or sedatives. I was so proud when Evanna barely flinched as he pulled it out - what a little champ! She still has one drainage tube left, and they were hoping to take it out this morning, but there was still a little bit too much fluid in it this morning, so they're going to give it one more day.

They did also did an ultrasound yesterday, and originally her diaphragm looked normal. However later in the afternoon the report came back with a change saying that while her diaphragm looks normal and moving in the right direction, it looks like there is indeed some weakening. This would explain why she's having a hard time being extubated and it fits with having open heart surgery and her chest being left open for a few days. Basically her diaphragm got stretched, and because it's a muscle, it just needs time to heal and return to normal. There is no telling how long that will take (days to weeks), but IF it's the sole reason of why she's having a hard time breathing on her own, then at least we can make a plan.
They're still going to do a few other tests to rule out any other possibilities, but I definitely agree with the explanation that it's a weaker diaphragm that's causing all of these issues.

Today they played around with the ventilator a little bit, but for the most part, we've mostly been hanging out. She has a laryngoscopy/bronchoscopy booked this evening in the OR, and depending on the results, they'll also do a CT of her lungs.

As for a long term plan, they will continue to keep her ventilated for a few more days, but then try to extubate again early next week (depending on pending test results). However they'll first extubate her to a BiPAP machine to help maintain the pressure she needs to breath. Then from there, they can slowly downgrade to a CPAP, and then eventually to high flow cannulas.
Because they have to go through the BiPAP route, they need to insert another central line because one of her IVs is in her head (her chubbiness makes her a hard poke!! Even for an anaesthesiologist!) and would get in the way of the mask.

Overall, I've learned to never go into a big surgery with expectations and that we just have to be patient and know that Evanna will heal in her own time. As for discharge, we're still looking at another week or two here at the Stollery. While it sucks still being on the PCICU, at least it means she still gets one-to-one care.

I also have to say a big THANK YOU for the outpouring of the love, comments and sweet messages we received after our last post. It was an emotional night, and we're grateful for all of your support.

xo The Irvine Family

Wednesday, October 15, 2014

Extubation Fail

My impatience was starting to get the better of me and I was so disappointed when we arrived to the PCICU Tuesday morning. Evanna was still going through withdrawal and looked absolutely miserable. They had taken out her catheter (so that's another tube gone....), but they were starting to wonder why her right upper lobe was still collapsed. They did an xray, and after that, decided to do a bronchoscopy to see if anything was blocking it. It was a long day, full of lots of emotions with many ups and downs (but with more downs), and I was still frustrated with the fact that Evanna was still intubated and mad that she was this way because of all the drugs they had pushed into her.
The bronchoscopy was done in the evening, and the results came back saying that there was nothing blocking the bronchi, so it was probably just secretions keeping her lobe collapsed. They decided to continue with the plan of extubation for Wednesday and continuing lowering her sedation medications in preparation of that. Just a few hours before we left, Evanna began to open her eyes and look at us. She was still drowsy, but making decent eye contact with Nick and I.

Today we came in with the plan of an afternoon extubation. She was calm all day long and keeping awesome blood pressures and oxygen saturations. She would wake up here and there and look at us. I was so positive that she would extubate with minimal problems and we would finally get a glimpse of our little girl. 
At 4:30pm they began the process to extubate, and for a little bit it looked like she was handling it okay. She was having a little trouble taking nice deep breaths, but this time she was awake. They tried a little epineb to help open her lungs, but as the minutes passed by, she began to look more and more pale, and more and more tired. They ran a blood gas, and it came back with really high CO2, so they called it and decided that they had to reintubate again. 
Our hearts were just crushed and we were absolutely devastated. She was so close, and nothing was adding up or making sense.

She is now sleeping and they're going to do an ultrasound tomorrow (one of the surgeons even mentioned a CT) to see if there's a problem with her diaphragm. Dr. Cave was just as disappointed as we were, and promised that he was going to find out what's going on and get Evanna back to her old self.

It's been a very hard couple of days, and I can't even begin to explain how difficult this has been for us. I'm at a point where I don't know what to do anymore and I'm getting extremely frustrated. I thought by now we would be out of the PCICU and Evanna would be close to going home. I know we'll get there, but it's getting harder and harder to envision.

xo The Irvine Family

Monday, October 13, 2014

PCICU Day 7 & 8

I thought I was going to be giving a much more positive update today and be all happy saying that Evanna got extubated, but sadly that isn't the case. 
Yesterday they spent the entire day getting fluid off her and lowering all of her sedation medication so she could be ready for extubation. It was actually kind of a boring day overall, so Thanksgiving dinner at my Aunt's was a welcome break from the hospital.

Dr. Cave (our intentivist) wasn't exactly happy with her medication levels this morning, but he still wanted to try extubation and see if she could do it. It's been a week postop, and she needs a good cough to get that upper right lobe to open up, and extubation wasn't exactly unfeasible.
At around 1pm they started the extubation process, and let me tell you - it was not fun to watch. She was wiggling and moving all around obviously not comfortable. Her eyes were open, but she wasn't making eye contact. I ended up having to leave the room for a little bit because it was hard for me to see Evanna so uncomfortable and fighting the ventilator. To try and keep her extubated they tried seeing if putting a BiPAP on her would help push the oxygen into her lungs, but she was just to tired to take nice deep breaths. Because of this, her CO2 levels rose, making her even MORE tired. So after about an hour Dr. Cave decided she had had enough and the best thing to do was to reintubate her and let her rest and try again tomorrow. 
Overall Evanna is having a tough time because of all the sedation she had been on, so she's now dealing with a little bit withdrawal and possibly hallucinating. They're trying there best to keep her comfortable and still wean her, but it's a tough balance.

Thank you for continuing to support our family.

xo The Irvine Family

Saturday, October 11, 2014

PCICU Day 5 & 6

Where to begin? So yesterday (Friday) was a bit of a rocky day. Poor girl was recovering from her chest closure - which is almost like another surgery, so she destated (which means her oxygen levels dropped) and her blood pressure kept dropping. The only thing that would help to bring her oxygen levels back up was to paralyse and bag her. One thing I haven't mentioned, is that during the initial surgery, the upper right lobe of her lung collapsed, so they've also been dealing with that. It's not as bad as it sounds. The doctors are not freaking out about it, so neither am I. They just have to work on getting it back up.
It was an hour by hour kind of day, with not much happening, so I left the hospital kind of bummed out. I guess something I've learned about myself is that I get a little sad on the days that  nothing happens. I understand that she needs these kind of days to recover, but they're not easy for me.

Today was a much better day. They haven't had to paralyse her at all, and I think they have finally found a good balance with her pain and heart medications. We've had a new intentivist today, and we really like him. Dr. Cave really wanted to get rid of the pain medications that were astronomically high and were obviously not doing anything. He's really smart and open to ideas from both the nurses and us (because we're there all the time we and understand her the best), and he has lots of ideas himself.
They also pulled out her LA line (its a wire that sits in her left atrium that measures pressure, as well as her central drainage tube. She still has 2 drainage tubes, one coming out from either side of her lower chest, but not much is draining, so those might also come out soon.

I asked about Evanna's intubation, because she does have moments of fighting with it (by that, I mean she's trying to breath on her own), but Dr. Cave doesn't think Evanna will be extubated until at least Monday. Again - they're dealing with that partial collapsed right lung.

Overall, although it's been a slow recovery, they're happy with her as she continues to move forward.

xo The Irvine Family

Thursday, October 9, 2014

Chest Closure

I had a tough night last night. Generally I've been very positive and upbeat, but a few things got to me and I couldn't stop the tear works. When I left the hospital at 10pm, they were very unsure if they were going to be able to close her chest and I was devastated. I ended up calling a heart mom friend in Calgary who's little girl has also gone through a lot, so I knew she would understand my frustration. Plus I knew she would have some insight and guidance that she could share to help me see the "bigger picture". I then went back to the Ronald McDonald and talk over my frustrations with Nick and eventually went to bed. I think another reason why I was upset is I'm slowly getting sick of just looking at her. It's been days since I've been able to hold her (let alone touch her very much), and I know it's going to be a few more days before I can.

This morning they called us just as we were leaving the Ronald McDonald to say that during cardiac rounds they decided they will indeed close her today. The hospital usually only calls when something bad is happening, but I had asked them to call me if they decided they were going to close her after all. When we got there she was having a mini episode, but after they administered a few pain meds, she calmed back down. They joked that because she's a red head, that she requires more sedation. Apparently there's a study that shows that redheads require 20% more anaesthetic because they burn through it faster.

At 1pm they came to take her into the OR and allowed us to walk with her to the doors. We said our goodbyes and saw her off. Just before 2:30pm, Dr. Rebeyka came out and said that though it was a tight fit (due to the large conduit), the closure went well. They ran a few tests, and he's happy with the blood flow to the lungs.
Next step is recovery. She will probably get a little sick again, so the next 24-48hrs will be rough, but we know she's a little fighter!

xo The Irvine Family

Wednesday, October 8, 2014


Thank you to the Jarred & Kayleigh Baker for the beautiful gift. The "Maddie Bear" is the current charity bear. Proceeds from the sale of these custom Gund plush bears will help raise funds for priority projects including state-of-the-art facilities at the Stollery Children’s Hospital
Hey Everyone,

So they decided NOT to close her chest today. Due to the fact that they inserted such a large conduit and it's still to close to the sternum, they couldn't close the chest. Also, when they close the chest, a patient can become very sick again, so they want Evanna in as good of shape as possible so she's better prepared for the reaction from closing the chest. There is a slight chance that they may not close it until Friday, but so far talks are to close it tomorrow.
Today they took her completely of nitric oxide (which is a good thing), but she's still in a bit of pain, so whenever the morphine and painkillers begin to wear off, she begins to destat (oxygen levels drop), and the Respiratory Therapist has to come over and suction her endotracheal tube and bag her for a few minutes until they resume their normal limits (I promise it's not as scary as it sounds).
Evanna's lower limbs are no longer cold, and they are able to control her temperature with Tylenol and Advil. It's not considered a "fever" because her white blood count remains within normal limits. The fever is just due to her systematic inflammatory response syndrome reacting to surgery.
She continues to be on Lasix to continue to "dry her out" and she barely has any blood drainage from her chest.
Overall, other then a few minor dips, she continues to be stable.

xo The Irvine Family