Reunited

It always feels amazing to see Sadie and Shawn walking towards the steps of the basement apartment.  This time they even had nursey Rachelle with them for a visit!  I feel so much better when our family is together.  Shawn and I were able to spend the morning at the apartment with Sadie while Rachelle went to reunite with Hope.  I needed the extra sleep this morning and loved being able to see Sadie when she woke up.

Yesterday was Make a Wish day at the hospital.  They had so many incredible things for the kids and I was sad that Sadie didn't arrive until the evening.  I went on her behalf and decorated a cupcake for her, dressed up a dog from Build-a-Bear and got her a little bag of goodies.  She was excited to see all her loot when she arrived and it gave us some toys for her while she's here too!

We got up to the hospital as a family before lunch.  Sadie was so excited to see Hope again and Hope was eager for Shawn to pick her up.  She was whining the entire time Shawn washed his hands and was instantly happy when he picked her up.  It was adorable to watch her face light up at the sight of her Daddy.  We had lunch at the hospital and were even there for transplant rounds this morning.  Dr. Kantor is back on and it was a relief to see him.  Our favourite resident was on call this weekend and said that Hope looked better than she'd ever seen her.  The heart meds are truly working and we are hopeful that they will continue to make such a positive impact on her.

In the afternoon, Rachelle and I took Sadie out to run some errands while Shawn and Hope had a nap at the hospital.  We spent some time there as a family in the afternoon before a volunteer arrived to take over at dinner time.  It's hard to believe today is already over and I'm somewhat thankful that the weekend appears to be going quickly.  I'm looking forward to getting back to Calgary and tomorrow will hopefully be our last full day here.

Biopsy Results

Exhausted does not even begin to describe how I feel today. I slept fairly well last night and thought I was ok in the morning, but could think of nothing other than a nap by lunch time.  It was another difficult day.  In rounds this morning, the doctors were discussing Hope and what was next.  I mentioned that I wanted to start the process of getting home and was told that we would be here for another week at least!  I voiced the fact that we were moving and that we were brought up here with the understanding that we needed to get home before long and that it would only take a few days.  That did not seem to matter and I was told that Calgary wanted us here until Hope was weaned off her heart medication.  I did not believe that was true and decided to call Calgary Cardiology myself.

I had the cardiologist on call paged and shortly after, our primary cardiologist called me back.  This was extremely kind of him to do as I believe he's still on vacation.  I explained to him what happened yesterday and what I was being told today.  He was not very happy to hear about our experience yesterday and informed me that Calgary did not want Hope weaned off her heart medications.  He promised to look into everything and get back to me as he didn't see why I could not return today.

A few hours later I got a call back from him.  The head of transplant cardiology would like an opportunity to look at Hope himself.  He is away and will return on Monday.  He will also be making the decision, with the team, about Hope's need for a transplant or not.  Our doctor felt that if we stayed in Edmonton until Monday, with the promise that we could come back to Calgary on Monday afternoon, that it would benefit Hope and potentially save us from needing to come back in a few days or weeks.

We have decided to honour their desire to keep Hope here until Monday and compromise on not getting to go home tomorrow, if it means we are guaranteed to go back to Calgary on Monday.  Shawn, nursey Rachelle and Sadie will be coming up to Edmonton tomorrow to spend the weekend here with Hope and me.  I'm hoping that Shawn will be able to remain up here on Monday to meet with the doctor as well, but that will depend on his work schedule so he's not sure yet.  Please pray that everything happens the way it has been planned to.  Please also pray that any further testing that needs to be done could be done in Calgary and that we'll be able to have more consistent care for a while.  The moving back and forth is difficult on our family, but also confusing for the doctors and nurses involved in Hope's care and causes us a great deal of stress.

Late this afternoon I was able to speak with the liver doctor.  He reported that the biopsy results are back and that they look really good.  Hope does have some dilating of some vessels in her liver, but they expect to see this in someone with Hope's condition.  Her liver shows no signs of anything that would prevent her from getting a heart transplant!  It also showed that the liver was much healthier than they thought and she would NOT need a liver transplant as far as they could tell.  It appears the liver continues to improve and although no one can explain it, I give the glory to God.

Although there has been some tension after the inappropriate discussion yesterday, the doctor involved has shared with other doctors that he was wrong and feels badly.  He knows that he has damaged a relationship he had with our family that involved trust and respect and feels badly about that as well.  I do not agree with what happened, but I realize we all make mistakes and I respect the fact that he is humbly admitting his error and feels badly.  As a result, I am choosing to move on and to work hard to have a professional relationship with this doctor as he will be a part of Hope's life regardless.  It will take time to regain that trust and respect, but anger doesn't look very good on me and I feel it's best to get rid of it.  Thank you for praying for reconciliation and for strength as I fight for the care that Hope deserves.

Blessings and Burdens

I want to update on the positive side of things first.  I don't want an awesome blessing to be lost by the garbage that happened today.  Hope was taken down to the OR at 4 pm and had her liver biopsy and varices treatment.  She did very well, and came back without oxygen and was stable.  Hope was able to come back to the ICE unit and did not have to go to PICU.  That was a blessing.  Hope's liver biopsy was successful, and we should receive some results in the next few days.  She had to stay on bed rest for 4 hours after the procedure and I wasn't able to hold her.  Being so late in the day, the doctor called up to give me a report as he headed home to his family after finishing with Hope.  Once again, the varices were so small that he did not need to treat them!  Praise the Lord that these varices have been so much better than anyone ever expected them to be.

I talked to another specialist this morning and had a couple more stop by, when I was in the meeting with the transplant team.  That meeting was the worst meeting I've ever had with a doctor.  I've had some pretty awful meetings where we are given horrible news, but I have never felt so angry.  I will say that much of the transplant team is away and this should not represent who they are, as it was just one person being rude and disrespectful.  The cardiologist that attended the meeting is one that Shawn and I grew to respect and value over our time in Edmonton.  I believe that trust is earned and once it is broken, it is extremely hard to repair.  Today I lost a lot of respect and trust for this man.

The doctor came in and asked me how I felt about everything.  I shared Shawn and my concerns that everyone would continue to wonder what to do for Hope for the next few months and that no one would make a decision and we would be stuck in limbo land forever.  He began talking about why transplant might not be good for Hope, and why we needed to consider how Hope felt about having to go through all these surgeries and the fact that she might not want to try anymore.  He basically shared that parents fight for children, but maybe that child no longer wants to fight.  He said that we could move on if we lost Hope and a lot of other rude and inappropriate things.  It was not until the end of the meeting that he informed me that these were all his opinions and in no way reflected the thoughts or decisions of the transplant team as a whole.  It would have been helpful for him to lead with that.  I sat through a meeting that was absolutely taking away all hope of a future for Hope, and fought for her life, her value and her right to receive care.  I did so with the belief that this doctor spoke on behalf of his team.  If he wanted to share his personal opinions, which I could care less about, he could have done that with me privately in a more appropriate setting.  Using a professional medical meeting as a soap box to share your personal opinions, that do not reflect my own, was inappropriate and uncalled for.  It was also completely unfair to me as I was not expecting it and was alone.

The synopsis of the meeting is that we don't have any more information than we did before we arrived. The team is away at a conference and a decision will not be made until next week.  Most of our testing and assessments have been completed and tomorrow I will begin pushing for a transfer back to Calgary.  I would especially like to get back after what happened today.  I'm frustrated with the constant changing of Hope's care and would like to have ONE hospital that cares for her so I'm not told two different things all the time.

Tonight after leaving the hospital, I tried to run around and get some things done while I was alone and did not have the opportunity to spend time with Shawn and Sadie anyway.  After 30 minutes I had a terrible migraine, felt exhausted, overwhelmed and burnt out.  I'm now back at the apartment and planning to head to bed early.  I want to go home.  I want my family around me again and I don't want them to change everything about Hope's care, just to send us back and have it all changed once again.  Please pray that I can return to Calgary tomorrow or on Friday at the latest.  I'm absolutely done.

Doctor Jam

Hope's bed was like a traffic jam of doctors today!  I walked in as the team was rounding on Hope and did not have a minute to wake up.  So many changes happen after a transfer and it's almost impossible to keep up.  Hope's TPN (liquid nutrients) were stopped this morning and they're going up on her feeds and attempting to concentrate them once again.  Something Calgary decided recently was not a good idea and had started the TPN as a result.  We'll see what happens.  As soon as the rounds were finished, the stream of doctors began.  Today I met with; Pulmonary, GI, Genetics, Infectious Disease, Neurology, the transplant social worker and the transplant coordinator.  On top of that, Hope had a long echo, ECG and other small tests done.

Hope is now on the on-call list for the OR tomorrow.  If the scheduling works out, she will be taken for a liver biopsy and her Varices treatment.  Please pray that she tolerates the anesthetic well, is extubated easily and able to come back up to ICE and does not need to go to PICU.  I'm never very excited about sending Hope to the OR without Shawn here, but I'm thankful I will not be alone.  Tomorrow afternoon I'll be sitting down with some of the transplant team to get more details about everything going on as well.

This is national awareness week for organ donation and transplantation.  This is good and bad.  It's bad because many of the transplant doctors are away at a conference and we will not get a 100% answer about whether or not Hope is being listed until next Wednesday.  It is good because the number of pediatric hearts donated each year has gone down and awareness needs to improve.  We need people to think about it and to be aware of the gift that organ donation is to the families that are waiting for organs.  Perhaps this very week a family will be touched and consider organ donation, a family that may gift a heart to Hope.

At this point, it looks like once everything is finished with Hope's work up, we'll be sent back to Calgary until we hear what's next.  Shawn was thankfully able to change our theatre tickets, but there was only one other date available, May 14.  That means I have to be home by then!  We'd still like to get back to Calgary as soon as possible, but I won't feel as stressed about it being late Thursday night or Friday now.

I'm exhausted and somewhat happy to be sitting alone in the basement apartment for the night.  I miss Sadie and Shawn, but don't have a lot to give after today and appreciate the alone time to unwind and rejuvenate for tomorrow.  I'm praying Hope will be called to the OR in the morning so we're not waiting on our toes all day.  You never know with these things though.  Thank you for continuing on the journey with us.

Fear of Flying

Have you ever remembered something at the worst possible moment?  Today as the nurses were getting Hope all set up for transport, I had a memory that I had never connected before today.  Over 6 years ago, I was at the gym with my friend Liz when we heard a massive explosion.  Being the nosey people that we are, we began walking towards the commotion.  It was impossible to tell what had caused it as almost nothing remained but smoke and small debris.  We later found out that a medical flight had lost control and in an effort to keep casualties down, the pilot had aimed for a closed BMW dealership.  The plane was completely gone from the explosion and the pilot, a doctor and a nurse lost their lives that day.  Not a memory you want to have when your own child is being strapped into a stretcher that will take her on a medical flight.  It took me to a weird place and yet I felt oddly superstitious about sharing my fear with anyone until I knew Hope was off that plane and safe.  I had a slight distraction when the EMT informed me that she followed the blog and knew all about Hope.  That is always very comforting for me.

I started the drive to Edmonton as soon as Hope was gone.  I stopped quickly for lunch and made it to Edmonton in decent time.  Hope arrived when I was only half way here and was able to spend time with some friends of mine.  There is always a great deal of confusion when Hope is transferred.  So much is missed and there is always a lack of information.  No one had any idea of when Hope needed meds, what meds, what had already been given and all those things.  The Calgary team had told me to NOT let anyone change Hope's feeds, yet they were changed immediately and I was told this was better.  It's difficult to argue unless I'm sure of something.

Hope's medications are not compatible on paper to run through the same PICC line.  They wanted to start an IV but I fought to have the meds stay the way they were.  After 4 days of running them this way, they are clearly compatible enough.  I was extremely angry when shortly after leaving the hospital this evening, they put in an IV.  I called and spoke to the nurse in charge and shared my deep frustration.  There had been some miscommunication among the staff.  There is now a large red note in Hope's file that says I need to be called before any IV's are put in.  I don't want this IV replaced when it fails tomorrow.  It's not fair to Hope, it's not a good long term plan when they don't last and we are damaging her veins for no reason.

Today Hope spent 2 hours having much of her body ultrasounded as part of her transplant work up.  Tomorrow she will have a great deal of tests done as well and will be examined by numerous doctors.  I am anxious in some ways, but I feel like I'm doing alright.  I think I am mostly worried that we will go through all of this, and they will decide she's not sick enough to list her yet.  I disagree, but that won't change anything.  Hope is stable, I would agree with that, but she's not stable enough to have any quality of life or go home.  To me, that means it's time to do something and if surgery is not an option and she won't improve with time, why not list her now?  I pray I'm wrong and this is a meaningless concern, but it's there in my mind.

I had a pretty odd introduction to the transplant doctor, if you could call it an introduction.  He walked over with the transplant cardiologist, that I've met numerous times, Dr. Dyck.  Dr. Dyck spoke to me a bit and checked out Hope.  This other doctor never spoke, stared at me the entire time and never introduced himself.  It was very awkward and will hopefully not be like that every time he comes to see Hope.  I'm going to tell myself that he was deep in thought and hope the next experience I have with him is less uncomfortable.  Thank you to everyone that continues to pray us through this difficult week.

A Heart that Beats

There are days that I return home and realize that I am completely numb to my environment.  I'll remember passing parents who are pacing in the ICU waiting room.  I'll remember seeing faces covered in tears inside a nearby room.  I'll notice streams of doctors running to a specific child's room with the look of concern they've shown for Hope, on many occasions, across their faces.  I realize at the end of most days that although I saw those things, I didn't feel them like I normally would.  I think you begin to protect yourself, as it's simply too painful to carry a burden for every family in the hospital.  You still feel pain for the families you know, but often hide your heart from those that you do not know.

Today as I stood in the hall speaking with our doctors during rounds, my heart came to life and felt terrible pain for a complete stranger.  A family, covered in sorrow and tears walked out of a room and down a seemingly dark hallway.  Soon after a nurse appeared, carrying their dead child, escorted by a security guard on the way to the morgue.  Today I could not be numb and my heart broke for that child,  and for the family that had lost someone so precious.  Most of all I wondered if that pain would turn the family against God or make them long for His comfort.  I don't know how you go through something so terrible without a belief in God.  Please pray for the family of that child as they finish off a day that they will never forget, yet wish they could.  I often wonder if I'll need some serious counselling one day to remove the ache from all the horrible things I've seen on this journey.

Hope was not transferred today as Edmonton was not ready to take her.  She is scheduled to fly out tomorrow at 10 am and should be able to be in the ICE unit (Intermediate Care Environment) instead of the ICU.  That's much nicer for me as it's a less intense environment, yet still gives Hope the attention she needs.  I'll follow her up in our car, but have friends that will meet her when she arrives and sit with her until I arrive.

I feel badly leaving Sadie in the midst of such chaos in her life.  She's still confused as to why her life is packed in boxes.  I truly hope that this only takes the 3-4 days they suggested and that Hope and I will be able to return by Thursday.  Our sweet Nursey is coming for a visit on Thursday and if I'm still in Edmonton, I'll have to find her a ride to Edmonton.  Also, Shawn knows that I love theatre and for my birthday in December, bought us tickets to a dinner theatre.  The show is on Thursday night and I've been looking forward to this date night for months.  It's again, very minor in comparison to the rest of our lives, but still disappointing.  I would REALLY like to be back on Thursday, with Hope's name on the transplant list.  I haven't gotten what I wanted too often in this journey so I'm trying to keep my expectations low.

This is a big week, it shapes so much of the future ahead for Hope.  We feel the stress of this, on top of a move and being separated as a family.  Would you please pray for our family this week?  Pray for Sadie as she doesn't get to see her Mommy and is already a little confused.  Pray for Shawn as he takes on the roll of single dad and no longer has his helper around to keep things in order.  Pray for me as I sit through a lot of meetings, overloads of information and the emotional roller coaster of the hospital.  Pray for Hope, that her little heart would speak clearly to the doctors and that she'd be able to begin her wait for a new heart, a whole heart.

Packing

I haven't had the time to update in the last couple of days.  We have been working hard to get the house packed up in case Shawn needs to do the move, with me in Edmonton.  The house is probably 85% packed at this point and I feel a lot better knowing we've gotten that done.  We are living with very little in our kitchen and can only cook a limited selection of items.  All of Sadie's favourites are still easy enough to cook; macaroni, grilled cheese, soup and of course waffles!  She's struggling a bit with the packing and will often protect her things from getting put into a box.  I'm fairly sure she doesn't understand what's going on and will be fine once we begin unpacking at the new house.  

I have come to terms with the fact that Hope and I need to go back to Edmonton and have changed my attitude about it.  That's usually the most difficult part, once my attitude adjusts it all feels much easier.  I'm still hoping we are only there for the week and able to return next weekend.  Please join me in praying that things move along in a timely fashion and we're able to get back to Calgary with Hope to wait for a transplant here.  Please continue to pray that she is a candidate for transplant and that God provides a match for her soon.  

Today the hospital said they would likely send Hope on Monday.  That's not what we had hoped for, as they wanted to start her testing Monday morning.  This will delay the process and potentially keep us there a bit longer.  I am thankful that we have some connections in Edmonton and that I'll be able to take a break from the hospital each day.  We are so blessed by our community around us.  I'll have to get the laundry done and our things packed for Edmonton tonight, just in case we go tomorrow.  

Hope is doing very well on her new medications and is starting to gain a bit of the weight she's lost.  She's still not back up to 15 pounds yet, but is surely getting closer each day.  Her smiles have slowly returned and she's more playful once again.  We continue to work at feeding her by mouth and try to celebrate every small step in the right direction.  

Life is crazy at the moment, but crazy actually feels fairly normal to us these days.  Shawn is pretty great at knowing when I'm about to lose my mind and forcing me to stop and rest for a moment.  It slows down my progress, but keeps me sane.  Hope spent today with him at the hospital as Sadie and I worked at packing.  She found some very creative ways to stay busy and got a few good laughs out of me today too.  Thank you to everyone that has been praying us through this transition and also to everyone that has helped out.