Fasting for the Long View

10:00 am Monday

I'm sad right now.  Sad and scared.  Yesterday morning all the doctors were raving about what a rockstar Annika has been with surgery and recovery, but today she looks worse.  She is hypertensive so they've had to add a bunch of meds to control her blood pressure.  Her CVP (Central Venous Pressure) jumped from 2 post surgery to 9 yesterday to 17 at the moment.  Her kidney labs (BUN and creatinine) have jumped, and she's stopped diuresing.  There hasn't been any urine output since I got here.  She has opacities in her lower lungs due to atelectasis.  Her skin feels hot and clammy, and you can see her poor chest heaving with every beat.  There is so much jugular venous distension.  Yesterday she ate a little food--today she doesn't even want a drink of water. Unlike yesterday when she was chatty and a little sassy, today she is lethargic, barely opening her eyes.  Today she's basically only woken up long enough to say, "I feel sick."  

If I've learned anything over the years, it's to take Annika at her words.  When it comes to how she feels, she doesn't overdramatize.  If she says that she feels sick, then she is sick.  I'm praying we can figure it out soon.  

Mostly though, I feel terrible guilt for putting her through all this.  There is such remorse for making her suffer.  The truth is that although she gave token consent, the decision was ultimately ours.  We took this hyper, happy kid, pumped her full of toxic meds, and now everything is struggling: her heart, her lungs, her kidneys.  What if we made the wrong choice?  What if her body can't accept this new heart?  The fear is paralyzing because no matter what, there is no going back. 

Today I am fasting for my daughter.  I am fasting for the patience and faith to take the long view.  I am praying for faith to see her playing tag with friends and pickleball with the family.  I am praying for the doctors and nurses so they can practice at their very best as they help her heal.  May they be blessed with inspiration beyond their own.  And may Annie's shared heart be blessed to heal with time, just as I pray for the hearts of her donor family to be healed with time.  Just as Annie's life will never be the same, I know their lives will never be the same.  Annie misses "Fred and George" (her name for her ICD/heart combo); I can't imagine how big the hole in their hearts is from the loss of their loved one.  Even as we all grieve a bit, may we find comfort and peace from on high.  I wish they could have seen Annika's echocardiogram today.  I teared up watching their shared heart beat steadily on.  This beautiful gift continue to give life.  I may be sad, I may be scared, but I am grateful.

7:30 pm Monday

Annika is still so sick.  Watching her chest heave, listening to her dry heave, feeling her pulses bound, seeing her flushed face and swollen fingers--it's all so hard.  For the most part she's hardly spoken all day.  This evening, however, she opened her eyes and said, "Mom, I just want to go home."  My eyes filled with tears.  Me too, baby girl, me too.

As sick as she is, there are still a few signs of spunk.  After she said she wanted to go home, she followed it up with a weak, "Come on Mom, let's go go go!"  Earlier today the nurse wanted her to rate her pain on a scale and she just didn't feel like speaking.  The sweet nurse said, "Come on Annika, you have to say something."  Annika stared her straight in the eyes and finally whispered, "Wolf."  The nurse laughed and said, "I'll take it."

8:30 am Tuesday

Another rough night.  It's hard--we checked into the hospital with a kid who had a sick heart.  Now her kidneys are broken, her entire left lung is filled with fluid, her blood pressures are uncontrolled, and she's super constipated.  Last night she was so uncomfortable--whimpering and crying from severe back pain.  She's grunting with every breath--they call it auto-peeping.  When our lungs are struggling, sometimes we grunt without realizing it to help the air sacks of our lungs inflate and stay inflated.

9:30 am Wednesday

Wow.  I feel like we've been hit by a Mac truck.  Acute kidney injury, pneumothorax, pleural effusion, septic work-up, hyponatremia--this feels like an overly complicated exercise from nursing school.  I never thought we'd have to add MTP (Massive Transfusion Protocol) and an emergency bedside sternotomy to the list.

An hour after I updated this post yesterday, her nurse went to check her chest tube and discovered deep red drainage.  The chest tube output had already been picking up--there had been 60 mL and 40 mL of drainage over the previous couple hours.  This time, however, the drainage kept coming and coming.  300 mL, 400 mL--by the time the team arrived, she'd already drained 600 mL over a matter of minutes and it was still coming.  You can tell how serious a medical emergency is around here by the number of people that arrive.  The cardiothoracic surgeon was called--he was ten minutes away.  The IV team came, emergency blood was ordered, followed by activating the Massive Transfusion Protocol.  They called nurses, techs, X-ray, and even a social worker for Jason and myself.  Annika was intubated at the bedside and we thought she would be rolled into the OR.  Instead, her room was transformed into an operating room.  They placed another IV in her foot and started pushing blood as quickly as they could.  As tears poured down my cheeks and I fought back sobs, Jason stood by Annika's side and told her how much he loved her.  The social worker asked me if there was anything I wanted to say to Annie before they gave her fentanyl, but I was too choked up to do more than whisper.

I can't describe what it's like to say your final good-byes to your child as a team of medical professionals frantically scurry around to get everything set up.  I can't describe what it's like to stand outside the room and watch as a surgeon opens your child's chest.  Mercifully, I am short and didn't see much over the mass of bodies.  What I saw was enough.  Jason saw it all--surgeon's hands inside our daughter all the way up to the wrists.  

What I can say is that I hope this is something you never have to experience.  The pain is excruciating.  I excused myself to the bathroom for a moment so that I could let out the ugly sobs in private.

Tethered to the pain, however, was still gratitude.  Immense gratitude for ALL the people who were there (30?  40?  I wish I had counted), each of them there for only one purpose--to save our child.  And save her they did.

While open heart surgery in your child's hospital room is indeed dramatic, the situation was not quite as dire as I make it sound.  Although Annika did lose a substantial amount of blood, her blood pressure never dropped to a dangerous level.  Her vital signs remained stable.  While there was a lot of blood pooled, they never found an active bleed after opening her up.  We don't quite know what happened or why, but they were able to send the MTP team back.  Before the surgery, the surgeon came to talk to us and ask us to sign consents.  He said, I know this feels like a lot, but it's not a crisis.  Always sassy, I told him that it felt pretty close.  And it did.  

But I know what an actual crisis is.  We've been there.  And thankfully this was not it.

Even though reintubation and a bedside sternotomy was not part of our plan, Annika has actually been doing much better since.  Whether due to the blood products received or getting that liter of fluid out of her chest, Annika's kidneys suddenly kicked back into action.  Hallelujah!  She started peeing a ton.  I never imagined that I would feel so excited by the sight of a giant bag full of urine.  

Her poor body has been so swollen, but she's started to lose that fluid too.  Her unrecognizably puffy fingers now look like her own hands, and her swollen cheeks have gone back to normal.  Her ankles had gotten so swollen that her ID band was tight, but it's loose once more.  Her blood pressures have been better with less medication needed to control it.  Her chest x-ray also looks better, and her electrolyte levels are back in range.  Last night she spiked a fever so they are being very careful about infection, but even the fever had broken by 11pm.

Even though in some ways Annika looks more sick--she now has an NG tube and even more IVs, she also looks better.  We may be headed into post-op recovery round 2, but we are hopeful for smoother waters.