Day 8: Edmonton

Friday, February 22nd

Today marks the one week anniversary of this horrific ordeal. Is Ellie doing better, yes. Do they know what caused any of this, no. We have to prepare ourselves for the idea that we may never know.  Yet we are taking solace in the fact that she is making good progress.
Morning rounds saw subtle changes to her drug regiment. They took her totally off of morphine and the goal for the day is to bottle feed her some food. We are going to start with a paltry 5 mL, which is a drastic change from her previous 120 mL per sitting.  We found yesterday that when I held her it did not alleviate her desire to eat, but with Dan she was content to just to sleep in his arms.  So this morning, that it is where she's been.  Who can blame her... Dan has that affect on most people.  Plus, when she starts eating I don't think I'm going to let her leave my arms... He may as well get his fix now.

Later her cardiologist came by and stated that they were going to ween her off of Milrinone and slowly introduce a new heart medication ORALLY.  This gets me excited because that means less tubes and with less tubes that means home to Winnipeg.  Of course this process is going to take a while and nothing is ever guaranteed, but it is cause for excitement.

Some of our cousins came to visit today.  It was surprisingly comforting to see them.  It alleviated a lot of additional stress that we didn't realize we were both carrying.  We are both still struggling with a lot of guilt when we are not beside her but we know we have to take moments away to recharge and keep ourselves sane.  

On returning from our visit Dan insisted on holding her right away and together they both promptly fell asleep again.  I'm beginning to think the only time Dan can relax is when Ellie is in his arms! They were quite a pair... both softly snoring in syncopation!  After an hour or so I "conveniently" poked and prodded Dan awake so I could finally have my turn.

Once in my arms it was time feed her, which lasted all of 5seconds. I really hope they increase the amount of food she can have in one sitting soon. I know that she is not physically starving, but she thinks she is, and that distress is hard to watch.

The weening/removal of her various drugs has made her movement very jerky and erratic, this is very common we were warned.  The doctor described these movement as "ballistic", which is very fitting as her hands have targeted her face like tactical ballistic missiles. For now while she is awake in either of

our arms our job is to minimize the damage she may inflict on herself. At least in some way we now have a sense of be able to protect her from something.

I'm finding the emotional journey of the last week incredibly draining.  Irrational thoughts sometimes plague my brain so I claim biblical truths that I have memorized throughout my life as comfort.  This, and the knowledge that there is a wonderful group of believers praying for her across North America, comforts me. That and the peace that only Christ can bring.

Day 7: Edmonton

Thursday, February 21

Every day is a struggle.  The waiting for a change either good or bad is what is killing me. No matter how we try, we are completely helpless to affect any change. So we wait, and wait, and wait anticipating the slightest change that we can latch on to and make some sense of what is happening to our little girl.

The days have started to blur together, without this blog I think we would be hard pressed to even tell you what day of the week it is. This new routine we have fallen into is completely foreign to anything we are used to, but we depend on it. I don't think either of us were aware of how much we relied on it until it was disrupted yesterday. I was a pretty dark place for most of yesterday as a result, so the goal for today was to try be as positive as possible.

Our routine was altered once again this morning, though this time it was of our own doing. Yay, finally some control over something. Mel left early to visit her parents who happened to have a three hour layover at the airport here on their way home to BC. This left me to spend the morning alone with Ellie.

When I arrived at the NICU I was met by our nurse from the past few days. She was very excited and looking for Mel. Ellie had a very good night and the doctors felt she was ready to have the ventilator removed. I told them that we had to wait till Mel returned from her visit to perform this monumentous (according to urban dictionary this is a real word) procedure.

With a few hours to wait before Mel returned I hunkered down with Ellie and tried not to think about the ramifications of what was to come later in the day. At home I read whatever I am reading to Ellie, so to pass the time I read to her from "The Great Gatsby". The passing doctors found this very entertaining and commented on how they all loved the book as they walked by. To me it felt like home.

When Mel arrived the team assembled to remove the ventilator, two nurses, one respiratory therapist, a few hovering residents, and the lead doctor is all it took. Everything went smoothly and within a few minutes Ellie was wide awake, alert, and just a little testy with all of us. It was wonderful to see her face without all of the tubes obscuring it. Though we were very happy to have the ventilator removed it was a little bitter sweet. She was very hungry and quite distressed as a result, but  we were told that food reintroduction will take a

few days to ensure her stomach can handle it. She is getting all the nutrients and fats she needs intravenously, so she is starting to gain weight again, only her belly feels empty to her.

Mel spent much of the afternoon holding Ellie and trying to comfort her. She was still very dazed from her drug regiment and the trauma of the past few days. After a few hours I was finally able to wrestle her away from Mel and get some daddy daughter time. Within a few minutes of her being transferred to my arms she passed out with her first nap of the afternoon. It was amazing just to hold her and feel her little body breathing the way it was designed to. It was so comforting holding her that I also fell asleep for a little while.

We left the hospital around 8pm, which is our goal every night, to ensure that we get some sleep, and after a day like today I am sure we will both be asleep before our heads hit the pillows.

Day 6 Edmonton

Wednesday, February 20th

Today was an odd day.

When we arrived at the NICU it was closed to all visitors.  Apparently when babies are too sick to be moved from the ward they actually perform the surgery there.  The area had been sterilized and the planned surgery was moments away from starting.  I hate to say it, but nothing... not even a surgery was going to keep me from seeing my daughter.  I think the nurse at the desk saw the desperation and determination in my face and let us in... If only to see her briefly and make sure she was doing ok.  We were a little shocked to find out that she had been totally taken off one of her heart medications during the night, we had been under the impression that this process could take a few days. Her vitals were strong and unchanged without the drug, this is a very positive step.  The doctors had also started lowering the levels of her ventilator in anticipation of removing it in the near future. They are now watching to see how her heart reacts to the greater workload.  I really wanted to talk to the doctor during her rounds but it was just not meant to be.

We spent the next few hours sitting and waiting in the family lounge at the hospital. Time seems to evaporate in the hospital and before we knew it two hours had gone by so we headed back.

It was a tough morning for Dan... the lack of progress and feeling of helplessness was really wearing him down. He found it very hard to sit still for any length of time so we did not stay very long.

When we headed back after a lunch break my plan was to get a thorough update from the first doctor or nurse I recognized.  I was even  prepared to be aggressive if necessary,  thankfully it didn't come to this.  Ellie's nurse was amazing (of course) and when I voiced my feelings (in a non-threatening or aggressive way) she made sure to tell me what she knew AND flagged down a doctor and had her talk to me.  We finally got the results from her head MRI... they came back normal.  Praise The Lord!  They were also pleased with how she was dealing with the lack of support from the breathing tube but they wanted to wait to see how her heart was going to react before it's totally removed.  Unfortunately she dislikes it immensely, almost as much as me.  I hate how she can't make any noise, the coughing is incredibly disturbing to witness.  A part of me just wants to rip it out BUT then I remember what happened when they put it in and I just suck my feelings up.

It was really nice to see my uncle Jock today and have him pray for us.  It was after this that Dan seemed more like himself... Or more like how he's been since this craziness began.  We were going to go out for dinner with him and his family tonight but plans changed when the nurse organized a massive undertaking for me... I got to hold Eliana!  It took no less than three people to move her with all of her tubes attached to her.  I was giddy like a kid.  Ellie stared into my eyes and I enjoyed talking and singing to her.  I think I motivated other moms in the ward to sing to their babies because I soon heard other songs wafting through the air.  If I was a self-conscious person I might have been intimidated by the amazing voice I heard in the next station.  Two and a half hours later I had to give her back and we retired for the night.

What started as one of the toughest days turned into the sweetest.  I know there's a lesson to be learned in that.

Day 5: Edmonton

Tuesday, February 19th

Ellie had a really good night. She slept most of the time but her nurse informed us that she was much more alert when she did wake up. There was a lot planned for the day and it sounded like we might not get to see her much during and in between all the scheduled tests. The most significant one scheduled for the day was an MRI . The plan was to do an MRI of her heart and her brain. The feeling was if she was there already why not do both at once. In order to get the best scan possible they planned to administer a mild anesthesia to ensure that she did not move around at all.

After the MRI we were moved to the NICU as there was much more space there than in the PICU. It is the same great care just a different location. The NICU actually feels like a much better fit for Ellie. In particular the beds are smaller so we have better access to her. Today was the first day during this ordeal that we have been able to hold on to one of her appendages for any prolonged period of time... Sure it was just her foot but we were incredibly thankful to have some intimate contact with her.

After the MRI we met our new team of nurses and doctors in the NICU. They are a very supportive and nurturing group. They did their evening rounds with members of the PICU team so that all the information was shared.
The team is starting to feel that Ellie's heart condition is less likely caused by a virus and are now leaning towards it being either genetic or metabolic. The MRI revealed that the chamber of her left ventricle was thinner than it should be. In a best case scenario her condition is physical in nature and can be managed with surgery and a drug regiment. But we are a long way away from any certainty.

The plan for the night was to begin weening her off dobutamine, the major drug she has been on to keep her heart beating at a healthier rate. This will give the doctors a better sense of how her heart is rebounding.

We left pretty late as we wanted to meet the new night nurse.   When home we ordered pizza from a halal pizza place... who knew you could get beef bacon!!!

Later that evening we received a word from a friend that brought our attention to Exodus 14:14.
"The Lord will fight for you, you only need to be still...".

This was going to be our verse of the day tomorrow.

Day 4: Edmonton

Monday, February 18th

Every morning we wake up and a feeling of anxiousness overwhelms us.  It's just an odd feeling, not having your baby with you... not quite natural.  We have started a morning routine that gets us out of our suite pretty early so we can spend the most amount of time with her.

When we arrived this morning we found Ellie still on the respirator.  In fact the lowered rates that they had begun last night had been reversed.  From the morning X-ray they found out that a lot of fluid had built up in her lungs over night due to her congestive heart failure.  Her heart was still incredibly fragile and they didn't want her to have to work too hard to breath yet.

Since the removal of the epinephrine, Ellie's heart rate had decreased to under 60 beats/min... which is crazy low.  After much debate amongst the professionals, they decided that they would give her a dose of a drug that is supposed to increase her heart rate drastically.  They then proceeded to hook her up to an ECG to record the results.  The good news is that her heart responded "normally".  One small success. 
 
After the new drugs were administered we met the "Heart Failure Specialist".  All I could think of was "worst title ever"... was he serious? It was around this time that I started to feel really small and incredibly overwhelmed.  I had to leave.  With my small knowledge of medical terms and functions, I was understanding a little too much of the doctor "speak" around us.  The full weight of the situation fell swiftly on my head and I just had to escape.  I forced Dan to go for walk/lunch to try and process everything, which seems to be a never ending task.

While we were gone, the cardiac physicians conducted another ECHO which lasted a good hour. 

In the afternoon our wonderful nurse put in a feeding tube that goes in through the nose and down into her intestine.  This way there is no risk of vomiting and yet she gets all of the benefits of the nutrients.  Her food is at a rate of 2 mL/hr, not a lot but at least it's a start.  We were also informed that she was taken off of the ECMO alert.  What a relief! I'm hoping with this news that the constant fear of her dying decreases.

At this point she is on two  powerful heart medications.  All of her vitals seem to be stable for now.  After this roller coaster of a day we were exhausted and ready for bed.

Day 3: Edmonton

Sunday February 17, 2013

After a super short sleep we made our way back to the PICU to check on our baby girl.  Thankfully she remained stable since we left her at 4am.  We arrived as the cardiac, infectious disease and intensivist doctors were doing their rounds. This was good timing for we were able to answer a couple of background questions that they had.  At this point every nugget of information felt like it held the missing key to Ellie's health.

Her attending (the doctor in charge and responsible for Ellie) came by a little later and shared the plan of the day.  The goal for the day was to ween her off epinephrine and possibly take her off of the ventilator.

We spent a large portion of the day sitting and staring at her... Trying not to fixate on her vital sign monitors.

We were able to get away for lunch with our awesome cousins Jon and Sara McKay.  It allowed us to  escape our reality and enjoy some fellowship with family for a few minutes.  It also gave us the opportunity to hand off our dirty laundry!  I had to pack a lot of dirty clothes (I hadn't done laundry in a while) and Dan's stuff from Jamaica was pretty ripe!  Lucky for us Sara has a servant heart and didn't even think twice about it!


While we were away our day nurse Melissa started Ellie on the "Treasure Life" program.  It's a bead program for cardiac kids that keeps track of a child's procedures while they are in the hospital.  We've decided that we are going to participate in the program.  We are not going to include every single test, IV line or blood work... If we did that her journey cord would be a few feet long.  Instead we've stuck to the major procedures.  It at least gives us something to do.  Seeing the collections of our neighbours, it's the first time that my competitive nature is working in reverse.  I'd like her to have the shortest cord!

The afternoon was roughly the same as the morning... Waiting, looking at her stats and tearing up.

We moved into our new accommodations conveniently located across the street.  This forces us to get out of the building and take a break from the intensity of the situation.  Our suite consists of a full kitchen, eating area, living room and separate bedroom and bath.  It's like our own one bedroom condo.  This wouldn't have been possible without the amazing cardiac program in Winnipeg.   Children's Variety has been amazing by dealing with the logistics of everything.  (If some of you out there don't donate your money to charity, you should consider this wonderful program.)

After getting settled and consuming some dinner, we headed back to her unit.  Awaiting us were results from her earlier ultrasounds of her head and other major organs.  The doctors were looking for swelling in the organs and any possible brain bleeds.  Apparently brain bleeds are common after CPR so they performed one as a precaution.  Fortunately for us the results were good.  There was no swelling or bleeding found.  Also, the epinephrine weening process was going well, by morning she should be completely off of it.  They were also going to lower her rates on the respirator and possibly remove it tomorrow.  Could it be possible that we would be able to hear her cry, laugh and babble at us?

After a long day we headed back to the hotel and passed out.  I guess our sleep deficit was still incredibly large!

Day 2: Edmonton

Saturday February 16, 2013

I don't think you truly appreciate our health care system until you are dependant on it  in a crisis situation.  The amount of care and support that we have received from the different doctors, nurses, and  Children's Variety is quite incredible.  They took care of everything, my flight to Edmonton, our accommodations, and a living allowance for food and incidentals.  All I was left to do was focus on Ellie... Or should I say obsess about her.

My flight arrived in Edmonton around 6 pm. Everything felt very surreal and  incredibly overwhelming. I was so nervous to know how Ellie's flight had gone that I was having trouble simply leaving the airport.  I was hiding in a bathroom stall trying to summon up enough courage to take a taxi to the hospital when Dan called from Toronto.  Apparently there was a snowstorm in Toronto and flights were running at least a few hours late. I just wanted him to get here already! 

I finally arrived at the hospital and began to wander around in an attempt  to find the PICU.  I was surprised by how dead the hospital was... The place was abandoned,  I couldn't find anyone anywhere to ask for help! Finally after 15 minutes of aimlessly walking around I came across someone who was able to give directions.  The first thing I saw when I walked through the door of the PICU was her flight team.  They had smiles on their faces and told me that she had a great flight with no incidences.  Hallelujah!  I didn't get to see her right away though... The team still had to put in a femoral line and I decided that I didn't need to see a procedure like that right now so instead I went to our "over night" room in the hospital and had myself a good cry.

Eventually I made it back and watched them run a battery of tests including an echo-cardiogram. The echo test lasted about an hour as they examined every millimetre of her heart.  After the various tests, I gave her medical history to the team of doctors who had assembled to evaluate her situation. It was impressive to see so many specialists in one place with their complete focus on Ellie. I felt reassured that we were in the right place.

After a few hours of assessment from the doctors and getting her comfortable, I finally felt like she was stable enough to go have a nap until Dan arrived.  It was 9 pm and I had hardly slept over the past 48 hours. I was completely exhausted, so exhausted in fact that I slept through a fire alarm!