a week of thanksgiving

Well today is Friday.  A week ago, Steve and I had Hank out to Primary Children’s Medical Center for his preoperative appointment.  Today, we are home with our little family and so grateful for modern medicine and amazing doctors.  Here’s the week in review.

Preop day.  Had a visit with cardiothoracic surgeon nurse pracitioner.  Also had to make a trip to lab for blood work and radiology for an x-ray.  Not a happy child. 

Hank’s xrays are really neat. You can see the pacemaker, the wires, the leads and the sternal wires that were used to close his sternum. 

We headed down to Salt Lake City, the night before surgery because Hank had to check in at 6am.  We went to Outback for dinner and on the way in, saw this heart shaped leaf of the ground.  (Surgery was on Monday, November 24)

Here is Hank waiting to go back.  Non-assumming.  He had no idea what was going to happen.  Mom and Dad were the nervous ones. 

We met with the cardiothoracic surgeon first, Dr. Burch.  He explained what he would do.  The plan was to first put Hank to sleep, then put an IV in.  Once the IV was in they would do a TEE (transesophageal echocardiogram) to do a final look to make sure their plan was right and to check heart function.  Once that was done, he would slowly make his way into Hank’s chest.  He planned to work slowly through the old scar tissue.  They would then hook up tubes to his aorta and vena cava(s).  This is for the bypass machine.  With this machine, the blood bypasses his heart and lungs and is oxygenated within the machine and pumped through his body.  They would also stop his heart so they could do the work they needed.  Dr. Burch explained that he planned to check the pericardium (tissue surrounding Hank’s heart) to see if he could use it to repair the hole between his atrium.  If it was not in good condition, he would use donated pericardium. 

Next we met with the anesthesiologist.  He said how he would put Hank to sleep.  Funny story, Dr. Pribble, Hank’s anesthesiologist told us he worked on Hank before.  He did took care of Hank on his very first surgery, 12 hours after he was born.  He remember Hank.  That made us feel comforted.  Anyway, he took Hank and carried him back to the OR.  Per Hank style, he screamed bloody murder the whole way back, we stood there and could hear him the whole time.  Such a little fighter. 

Then we waited.  You sit in the waiting room and get calls from the OR nurse.  The first two calls were quite disappointing.  Only because things were moving so slow.  The second call which was about 3 hours in, they told us they were still working their way through Hank’s scar tissue.  It was disappointing but also comforting.  We knew our surgeon was being so careful.  The 3rd call they told me Hank was off bypass and they were cleaning up the area and going to put in Hank’s new pacemaker generator.  Amazingly Hank only had to be on bypass for about 30 minutes.  Whew.  About an hour later, Dr. Burch the cardiothoracic surgeon came to see us.  He said everything went great, Hank did great, and we should see him soon.  Wow.  He also said he had to use donated pericardium to seal Hank’s hole because his was all “nasty”.  Thank heavens for donated organs and tissues… people be a donor, it saves lives! 

We waited for an hour and a half to see Hank.  What a wait.  While I waited, I read the book about Hank’s new pacer.  Pretty boring actually, but this page made me laugh.  (more on his new pacer later, I really don’t know too much about it currently). 

Finally, we got to go see Hank.  He was in the cardiac ICU, room 3.  Poor baby was trying to wake up from anesthesia.  He was doing a pitiful little whine, but oh his color was amazing.  He looked so good. 

The first picture I took of him.  The tech was putting a lot of pressure on his neck.  It turned out, when they pulled Hank’s breathing tube out, one of his lines started bleeding.  Apparently it wasn’t a little blood but a lot.  The tech was told to put pressure on Hank’s neck for 60 minutes to control the bleeding.  Finally, they got a medicated band aid which slowed it down.  No wonder we had to wait so long to see him! 

Hank came back with an arterial line, two peripheral lines, a temperature probe, a chest tube, a foley catheter, and high flow oxygen at 8 liters.  At home he was at 2 liters, this seemed like a bad sign.  Especially since we were hoping to get Hank all the way off oxygen after his ASD repair.  He also had a whole bunch of syringe pumps.  Meds infusing were tranexamic acid (to prevent bleeding), cefuroxime (an antibiotic he would be on for 48 hours), milrinone (to help his heart function – wheaned off within 24 hours), lasix (a diuretic), and fluids to keep him hydrated.  Just in case meds were dopamine and epinephrine which were never used. 

Here’s Hank trying to wake up from anesthesia.  He took quite a while to really wake up.  Probably didn’t wake until around 9pm post op night.  He was also so so itchy from his pain med, morphine.  I felt so bad for the kid.  He just kept scratching and scratching all evening.  He had the reddest little face ever.  Finally, the nurse got him some IV benadryl.  That was a mistake.  Unfortunately it worked opposite and just made Hank wired all night.  He didn’t sleep at all.  Just kept waking up and rolling over onto all fours trying to escape.  The only thing that could calm him was his iPad playing the Wiggles “Go Santa Go” show.  He watched that probably 50 times while he was at the hospital. 

Finally, feeling a bit more comfortable.  By this time his oxygen flow had been turned down to 1 liter.  what a relief.  I had ordered Hank’s pillow from a designer that sells on etsy weeks before his surgery.  If you want to know where it came from it is Roxy Marj, she is amazing!!  Go support her business, I love love her work. 

Hank’s post op x-ray.  Looks pretty good.  Too bad we can’t see the pacemaker.  Maybe next time…

The first night in the hospital was spent in the cardiac ICU, I stayed with Hank until about 2 in the morning, then Steve switched me out.  We were so so tired.  Hank’s friend Madelyn drew him this family portrait before surgery.  Can you tell which one is Hank, and no he is not sporting a mustache!  (The numbers are ages… and remember people this is drawn by a little one, so they may or may not be correct…).   During his hospital stay Hank found his happy place, he loved his little crib.  It was his safe spot, which was surprising.  That’s where everyone poked and prodded him constantly.  But he wanted to be there all the time. 

I had to petition the surgeon to save Hank’s old pacemaker for him.  I had to sign my life away to get it as it’s a biohazard since it’s been inside his body the last two years.  We got it though.  I’m trying to figure out what to do with it.  I was thinking about engraving… any suggestions are appreciated.  Isn’t it so so cool?!  Life saving machine.  

On a side note, they tried to find Hank’s underlying heart rate (non-paced) while he was in the OR.  They did not detect any underlying heart rate at all.  This kid would not be alive without this little machine.  Mind blowing. 

Day two went much better, Hank was eating well and was on low flow oxygen.  Down to 1/8 liter, Hank had never been to 1/8 liter before.  We were feeling quite hopeful.  But cardiology insisted he had chronic lung disease and we shouldn’t expect to be weaning.  Same old from cardiology. 

Later, that day I got to meet with two of “my people”, as quoted from Amy.  Amy (with Parker) and Lena are heart block mama’s too.  Amy’s Parker has congenital complete heart block and is a pacer kid like Hank.  Lena’s baby also has heart block and is expected to join us in the next couple weeks (keep them in your prayers)!  Lena and baby are from Montana and have been here for weeks awaiting the birth of their baby.  Amy lives in SLC and found me via facebook.  So glad I got to meet these ladies.  “My people” 

Later that day we got moved to the surgical floor.  This was only after they pulled out his chest tube.  He hated that.  The stitches around the tube didn’t work as expected so there was a nice circular hole in his chest, but it will close eventually.  It did have to be covered with vaseline gauze to keep air out though.  Once to the floor, it was sad to loose access to our amazing ICU nurses, but we did get our own room and it had a couch so you could sleep in a bit more “comfortably”.  Steve did all the sleep in’s and let me stay at the hotel.  So appreciated. 

By then, Hank was on just a tiny bit of oxygen and doing great.  When I came back from the hotel Wednesday morning at 4am, I found Hank on room air, no oxygen, and doing amazing.  Yay,  we were so relieved.  Since then, he has been on room air.  Bye bye oxygen concentrator, oxygen tanks, and constant monitoring.  Hooray for freedom for Hank. 

The rest of the hospital stay was pretty uneventful.  Hank had to have daily x-rays, and many blood pressure checks, pulse checks, etc.  He hated it.  He slowly got out of bed more, ate more, and slept more.   

On Wednesday, Hank had a sedated heart ECHO to check his heart function and to make sure his ASD was not leaking.  Good news, everything is in order and his function will continue to improve as his heart heals.  His new pacemaker has the same settings as the previous and is working amazingly.  Hopefully it will give us more years of battery life (~8).  Modern medicine is amazing. 

Wednesday afternoon, my mom drove Drew down to stay the night with us in the hotel.  He had been such a sport and was so excited to see his brother.  Funny story.  When Drew first got to the hospital we were waiting to go up to the floor by the elevator.  A young woman was also waiting.  She was in a hospital bad, badly injured.  She had a neck brace on, a bloodied and bruised face, casts on both arms and was resting with her eyes closed.  She was hooked to many monitors and looked as if she had been in a pretty severe car accident.  Her parents and her nurse were with her and there was silence.  Drew of course noticed her and couldn’t not say anything. 

Drew:  What happened?

Me:  She got hurt Drew. 

Drew:  Is she dead?  She looks like she’s dead.

Me (covering Drew’s mouth):  Shhh Drew… no she just had an accident and got hurt. 

Drew (laughing):  OH, I thought she was dead. 

Me:  I’m so so sorry…

Oh my gosh.  I was mortified.  Surprisingly, his little line of questioning brought a smile to the parents of the poor girl and also the young woman.  As my dad said, he is definitely not without guile. 

Drew and I went to cheesecake factory and the disney store that night before we went to the hotel to sleep.  Thanks again Steve!

We were set to discharge on Thursday.  Hank was ready and so were we. 

 

We came home to find our great friends (thanks Mary, Scott, Rosie, and Ev) and decorated our home with hearts and balloons.  Others had brought by treats for our family.  It brought tears to our eyes.  Hank had so many prayers and fasts in his name, we were so grateful.  He really is loved.  We are lucky that he was given to us.  Really. 

After a quick Thanksgiving dinner with family (you know who you are), Hank was so happy to have his own bed. 

 

How are things going now?  So great.  Hank is allowed his normal activity except: 

1.  no lifting or pulling from under his arms, you must scoop to life him for 6 weeks

2.  No playground equipment or rough play for 6 weeks

3.  No submurging in water until his steri-strips come off his zipper.  Until then, sponge baths will have to do. 

He is still off oxygen and doing great.  I always thought his color was good before, but now he is just rosy and pink  He looks amazing.  He is happy and enjoying his new found freedom without tubes or wires. 

So so thankful.