Crashing In

Over the last week I have found great irony in the turbulent flight from Chicago to Tulsa.  Tulsa was experiencing 70 mph winds during our landing.  It was a rough flight and at moments I wondered if we were going to be crashing in, falling from the clouds.  Throughout the first week or so following Diego’s discharge, a flood of emotions surfaced.  I realize now looking back that not only did Diego and I physically have a rough landing, but an emotionally rough landing as well.  As if we were coming in on two flat tires.

I was able to continue moving forward throughout the weeks leading up to the surgery and during our time in Boston because of an adrenaline high.  This adrenaline kept me wide awake for 1 week straight even though I had very few hours of sleep.  I was able to “hold it together” and take each moment as it came.  Not looking back nor looking ahead.  I was simply living the moment as it presented itself.  It seems logical to me now that eventually all the emotions would catch up with me.  The flood gates would open and crash over my life.  During the initial days following Diego’s discharge I felt as if I was drowning trying to keep my head above the water.  I desperately wanted to crawl into a hole and hide.  I kept thinking if I can just escape within myself the flooding waters would pass me by.  I did not want to talk about it nor did I want to blog about it.  I simply wanted it to disappear.  It is funny how I subconsciously thought if I cover my eyes, ears, and mouth that the ugly monster will no longer exist.  I suppose it is similar to how a baby believes if they cover their own eyes then others will not be able to see them. 

The first week home Diego was physically recovering well, but emotionally he was struggling.  He was asked by a friend, how he was feeling and he said with an upbeat reply and a smile on his face, “I feel good!”  Then she asked, “Do you want everyone to stop talking about it” and Diego replied meekly, “Yes, kind of”.  He had been brave for so long and he was also coming down from the adrenaline high.  Diego would show off his incision with great pride to anyone that asked about it.  Then at home, he would complain that his scar could be seen when he was wearing his school uniform polo shirt.  He recognized what he should be feeling was bravery, confidence and pride.  But what he was truly feeling was weak, timid and defeat. He too thought if he could just cover it up it would no longer exist.  Diego is at an age where he is completely aware of what he is up against, therefore, it makes sense that he is struggling with it emotionally.

Some of the lyrics from Katy Perry’s song “Wide Awake” have struck a chord with me and possibly express these emotions better than I can. 

I'm wide awake
Thunder rumbling
Castles crumbling

I am trying to hold on

God knows that I tried
Seeing the bright side

But I'm not blind anymore...
I'm wide awake
Yeah, I'm falling from cloud 9
I'm crashing from the high
You know I'm letting go
I'm falling from cloud 9

Of course these lyrics can have multiple meanings, but to me it expresses the feeling of trying to hold on and focus on the bright side while crashing in from our adrenaline high. 

Homecoming Post-Op Day 10

Friday, September 7, 2012-10^th day following the PA band surgery

Diego had an 8:00am appointment at the hospital.  He was given the approval to return home and follow up with the cardiologist in Tulsa next week and have his chest tube stitch removed at that time.  After the appointment, we had a few minutes to drop off some thank you cards that Diego made for his two favorite nurses from the PICU-8 South. 

We quickly made our way to the Boston Logan International Airport to catch our flight back home.  Diego wore his signed Blitz Soccer team jersey both to Boston and for the return flight home as well.  It was a rough flight all the way home, especially when we were arriving at the Tulsa International Airport.  There were 70mph winds in Tulsa and the surrounding areas.  Luckily, Diego was asleep through the roughest part of the flight.  All passengers, myself included, were frazzled by the intense turbulence.  We were grateful to be safely on the ground. 

Diego and I expected my sister and children to be at the airport awaiting our arrival.  Much to our surprise, as we exited the airport’s secure area, Diego was overwhelmingly greeted by an enthusiastic group of friends and family!  It was amazing to say the least.  I don’t know why, but I continue to stand in awe by another glimpse of God's divine grace in our lives.  To be surrounded by such love, support and devotion is a true gift that I will forever embrace.

The Yawkey Inn Post-Op Day 8

Wednesday, September 5, 2012 – 8^th day following the PA band surgery

This morning was the first day it had rained since we arrived in Boston.  I must say that I was a bit relieved to simply stay inside curled up in my pjs working while Diego watched cartoons.  I think Diego and I were both feeling some of the stress lifting this morning.  It is amazing how you just keep moving forward under the pressure never realizing how exhausted you are emotionally and physically.  This morning it felt like I exhaled for the first time in almost one year.  I know that we still have another battle to fight, but for now it felt good to just breathe.

Well deserved Captain Diego!

Diego loves history; therefore, he was very interested in seeing Boston.  We decided to take the Ducktours this afternoon after the rain stopped.  We thought this would be an easy way for Diego to see Boston and learn about the history of this great city.  The “conducktor” even let Diego drive for awhile!  By the time the tour was over, you could see in Diego’s face that he was exhausted so we took a cab back to the Yawkey Inn for the night.  Diego truly enjoyed his afternoon excursion. 

8 East Post-Op Day 7

Tuesday, September 4, 2012 - 7^th day following the PA band surgery

Diego did not sleep well last night.  He was awake sitting up in the bed a lot complaining that he was hot.  Yesterday evening, he developed a rash on his lower back; most likely from the heat and moisture of being in the bed.  During the night, the rash was irritating him so he was unable to sleep well. 

Leaving the Hospital

Diego was relieved to be able to take a shower this morning.  Afterwards, the ultrasound tech came in to do his echo around 9:00am.  It was approximately 2:30 when Dr. Marx and the nurse came in to see Diego.    Dr. Marx, the cardiologist, was very pleased with Diego’s echo.  He is optimistic that Diego’s left ventricle will be prepared for the Double Switch surgery within 1 year.  Diego will be seen by the cardiologist in Tulsa routinely for checkups to monitor the left ventricle.  Once the cardiologists feel the left ventricle is ready for the anatomical repair then we will return to Boston for the Double Switch operation.  We estimate that this will be sometime during the summer of 2013. 

By 4:00pm Diego was officially discharged from Children's Hospital Boston.  We will need to remain in Boston for a few more days to ensure that Diego is ready to fly home.  Diego will be seen by the doctor for one last echo on Friday then we will return home over the weekend. 

8 East Post-Op Day 6

Monday, September 3, 2012-6^th day following the PA band surgery.

It was a long night of multiple trips to the restroom.  This morning around 10:00am they sent Diego for another x-ray to check on his lungs.  He is making progress, but he still has fluid in the lungs and the bottom of his lungs needs to become more elastic.  After the x-ray Diego and I went outside to the garden and spent an hour enjoying the beautiful weather.  Then we found an old Pacman game to play in the family entertainment center.  I think this was the first time I ever played an electronic game better than any of my children!  The last stop before returning to the room was the vending machine to buy a Mug root beer and chips.  Diego wanted something different to drink since the nurses are really encouraging him to drink a lot of fluids. 

We were told that Diego would need another echo on Tuesday morning.  If the left ventricle looks good then he would be discharged from the hospital.  The doctors want him to stay in the Boston area for the follow up appointment instead of returning to Tulsa for the follow up as originally planned.  They are continuing to watch his left ventricle to ensure it is capable of handling the increased pressures from the PA band.   

Sweet Dreams

8 East Post-Op Day 5

Sunday, September 2, 2012-5th day following the PA band surgery.

Diego is on Lasix to help with the excess fluid.  He spent a lot of time in the restroom due to the Lasix and the amount of fluids they need him drinking.  The general theme from Diego this morning is, “I want to go home.”  I think he is struggling for 2 reasons.  First, his dad is leaving this evening to return home.  And second, he knows that his soccer team is playing this weekend in a tournament.  Thankfully, his remote control car has made him smile and helped to get him up and moving around more.

The nurse moved Diego into a different room this evening.  Diego had been sharing a room with an infant.  He was struggling with the baby crying throughout the day and night.  Hopefully, Diego will be happier in his new room.  By the evening, I could tell that he was getting around a lot better.  He was able to get in and out of bed on his own with no assistance.  He did not ask for any pain medicine this evening either and seems to be doing just fine without it. 

8 East Post-Op Day 4

Saturday, September 1, 2012-the 4^th day following the PA band surgery.

Diego woke up around 3:30am, the nurse came in to take vitals and gave him Tylenol and Codeine.  He slept until 7:30am and once he was awake he quickly recognized our pattern for the day would be to eat, drink, walk, lung exercises, vitals, medicine, and repeat. 

We were sent downstairs with Diego and a wheelchair for an x-ray around 9:30am.  The nurse told Diego to walk for as long as he could then he could ride in the wheel chair when he was tired.  After we finished with the x-ray, Cesar and I took Diego outside to the garden for some fresh air.  This was the first time he had been outside in 4 days.

 

We returned to his room for an EKG at 10:30am and around 10:45-Dr. del Nido stopped by.  He said they will want another echo before being discharged, possibly on Monday.  We will then need to schedule another appointment a few days later to come back in for a check-up/echo before returning home.  The x-ray showed that the bottom of his lungs were still collapsed which meant we needed to aggressively continue with our daily routine of eating, drinking, walking and lung exercises.  By the end of the day, I could see huge strides in Diego’s body functioning independently. He was still struggling with pain, gas and nausea, but he was definitely progressing.