Chylorthorax :(

I'll need to be creative in order to fit the craziness that was today into one blog post!  I knew it was not a good sign to see the X-ray machine over Hope as we walked in.  The nurse said, "I'll explain in a minute."  She pulled me aside and explained that Hope was labouring to breath and that they were quite worried about her.  We were quickly told that her left lung showed a large amount of fluid and a small amount on the right as well.  Hope was having this problem in Calgary and the doctor tapped her left lung to remove the fluid a long time ago.  The fluid did not look like Chylothorax, but was sent away for testing.  With a great deal of Lasix, the fluid was removed and I never heard anything about the test results being noteworthy.  FAIL.  Apparently the results showed that it was Chylothorax then, but it was missed by the doctors and therefore never treated.

Chylothorax is a side effect of heart surgery.  It is apparently very rare, but not in my world.  I live with all heart families each day and tons of them have it!  It is essentially leakage from the thoracic duct into the lungs.  The fluid needs to be removed in order to make it easier for the patient to breath.  Knowing that this is a side effect of heart surgery, Hope has had this since November.  It helps explain why we've had such drama with her feeds.  The treatment of it requires a completely fat free diet.  Hope's current feed has a high level of fat in it, so she will no longer be able to have it.  She is being switched to a fat free feed that we have tried, and failed at using, once before.  PLEASE pray that her body miraculously accepts this feed if Hope has Chylothorax.  Although the doctors are 99% sure that she does, we are waiting for lab results from the fluid to be sure.

Around lunchtime, our miracle vet doctor came in to put an IV in Hope.  He was able to get one in her head, after shaving more of her hair off.  When I got back to the room, I often leave to avoid having my heart broken once again, I found some tape on her bed.  The tape was full of her hair!  I almost broke down knowing that it had been removed from her head and had worked as a waxing strip to tear her hair off with it.  This was obviously not intentional by the staff and explains why they decided to shave some of her head.  It still breaks my heart to have her hair shaved.

The head IV was essential because Hope's magnesium levels are dangerously low.  The oral magnesium they were giving her was giving her terrible diarrhea and not working.  This is incredibly dangerous for Hope, as low magnesium causes irregular heart rhythms and could easily take her life if not treated quickly.  She is already receiving magnesium boluses through the IV line and will continue to receive them every 6 hours until her level stabilizes.

After this drama was complete, Hope was taken for an ultrasound to see what access points were available for a PICC line.  We know that IV's are short lived with Hope and something more permanent was required.  When this was discussed at morning rounds, we were told that if they had to use her jugular vein in her neck, a clot would be deadly for Hope.  This is the only source of blood to Hope's brain currently.  The other side is already clotted off and this is truly our lifeline.  They thankfully found a potential vein a little further down on the right arm.  This is still incredibly dangerous if it clots, but we'd still have a slight chance of saving her.

At 2:30 Hope was brought down to be put to sleep and have a chest tube put in her left side.  This was to drain the fluid from her left lung and will be in for a few days at least.  They were also going to attempt to get the PICC line, but were unsure if they had enough OR time.  Hope was clearly not previously scheduled for these procedures.  Hope came past us 30 minutes later with her chest tube in, but they had not been able to attempt the PICC.  She was taken to recovery and I was sent back upstairs.  5 minutes later the anesthetist walked in and said, "Miracle of all miracles, an OR just opened up and we are taking Hope now to put her back to sleep and attempt the PICC line."  This was amazing news!

Already exhausted from the emotions of the day, my mom and I had not moved when 2 minutes later a nurse walked in.  We were told to run down to the radiology desk as I had not yet signed consent for this second procedure.  It was a bit disorganized but we eventually found the doctor and I was able to sign consent.  Then the waiting continued.  Thankfully this time I was not in ear shot of the OR.  The first time, I had to listen to Hope scream until the medications took over and she went to sleep.  It was a horrible form of torture, but I couldn't bear to get up.  I just wanted to know that she was no longer screaming and waited for what felt like eternity to hear her voice quiet.

At 4:30 we got word that Hope was back in recovery and doing well, the PICC had been a success!  We are praising God for this PICC line and also begging Him to not allow it to clot.  The doctors have been very honest today, Hope is up against a lot of hurdles.  We have much to overcome before she is truly stable, but the fight is not over until God brings her home.

The cardiologist came to see us around 6:00 to let us know that Hope will likely be having her heart surgery on Thursday, this Thursday.  If she could have gone home to gain weight, they would have preferred that.  Since it does not look possible at this point, we are going to move forward with the heart surgery.

I think the most difficult part of today, was hearing Sadie in the back of my head.  I had told her last night that Mommy and Hope would likely be coming home later this week.  She was so excited, she squealed and said, "baby Hope all better?"  It broke my heart to know that I wouldn't be able to come home, or bring her sister back to her house either.  Sadie is so longing to have us back together as a family and is getting better at expressing it as the days turn into months!

I'm exhausted, I have never felt like I needed a vacation more.  This journey is exhausting and my reserve energy is running low.  I'm so tired of getting excited, and shortly after being devastated by bad news and set backs.  I am truly hoping that this surgery makes a world of difference and that each day after, we are only waiting to heal before we can finally go home as a family.  We are still in need of your continued prayer.