Life is Good

Eddie has his follow up appointment with the surgeon today.  It was a bit chaotic when there because he had blood work, x-rays, and an EKG.  Unfortunately, we weren’t really clued into all that today’s visit entailed.  However, I was glad everything was so thorough in the end.  Dr. Gaca said the blood work was good.  While I don’t know everything that was looked at in that, I assume things such as clotting factor, blood counts, and blood sugar level were some included.

His EKG and x-rays also looked good, and his incision is healing marvelously.  Dr. Gaca echoed the sentiments we heard many times before in this surgical journey….being a teenager is a definite advantage.  He will continue to take baby aspirin to ward off against any potential post-operative blood clots, and his bp continues to be low so the rest of his medication regimen is on hold until he sees the cardiologist at Hopkins next month.

The doctor reiterated the need for Eddie to restrict his activity for the full six weeks as his breastbone heals. He explained to Eddie that something like a golf swing, swimming, pushing up on his arms to get up and down, or carrying a backpack could cause the bones to shift while healing which would be a significant and painful complication.  He said Labor Day is the magic day for him.  By that time, he should be able to drive and increase his activity.

The doctor said he could return to school when it begins for students in two weeks if he feels up to it.  However, he will likely start with partial days no matter when he begins.  He will not have restrictions after Labor Day because his body will have healed. However, as it stated in the literature Dr. Gaca left us with, the heart is a muscle.  Eddie’s muscle will have not pushed itself and will need to be strengthened overtime.  Therefore, it may take quite a bit more time until Eddie’s strength and stamina has returned to pre-surgery levels.

Thankfully, the surgeon is so impressed with Eddie’s progress that he does not have to return for the usual 6 week post-op follow up….especially since his cardiology visit is at the end of September.   We return to Dr. Gaca in one year.  Life is good.

There’s No Place Like Home

So originally I planned to write an update daily while E was recovering in the hospital, but life in a hospital knows no time and no routine so that didn’t happen. However, I thought now…. more than a week after surgery … would be a good time for an update.

E has made truly remarkable progress.  His appetite is returning (slowly but surely), his pain is controlled, and he is quite mobile.  He feared taking a shower.  In addition to the incision down the middle of his chest, he had three holes in his upper abdomen from chest tubes that have stitches and numerous other sites that are tender from a variety of tubes, IVs, and wires that are healing.  When one has a sternectomy with open heart surgery, I’ve discovered one has pain in the unlikeliest of places.  His shoulders and back have been quite sore from having the ribcage pulled and internal organs shifted to get to the aorta and heart.  He was worried that a shower would be quite painful from all of these factors.  He had a shower and he realized the pain was mild compared to the exhaustion that set in from such a seemingly ordinary task.

For him, the exhaustion  has been the most surprising and frustrating thing in the recovery process, it appears.  However, it is apparent he is getting stronger everyday.  He continues to use his spirometer and he has even reached the target of getting to 2000 on it once.  He also is taking daily walks that include stairs.

His recovery has continued well since he was released from the hospital in record time (just 4 days)!  I think one of the major contributors to this is his ability to get good, solid, uninterrupted rest.  He doesn’t nap (some things from childhood never change), but he has slept well in the night.

Earlier this week I took him out to a nearby Chinese restaurant to indulge him in his favorite food.  I offered to drive him to the mall just for a change of scenery, but he declined.  He felt like that was too many people and too much stimulation this early.  All in all, things are going well.  We continue to monitor for any signs of depression or anxiety, which appears to be quite common in patients after such a major heart surgery.  However, he seems to be in great spirits (although I think he’s a little tired of looking at his parents and brother on a daily basis).  We return to the surgeon for his first post-op visit a week from Monday.

Day Zero

So day zero — surgery day — is behind us.  They began at 7:30 am and had finished within 4 hours just as expected.  So let’s cover all that has happened in that 24 hours from the end of surgery.  It is mindboggling.

In ICU; bit of a temperature and somewhat hypertensive when he got there, but all is well now.  Breathing tube out, started liquids, one chest tube out, off oxygen, sat up, walked a lap, central line out, moved out of ICU to step down unit, off all drips.

He woke his dad up around midnight and asked him to talk to him and tell him stories.  He sleeps a lot, obviously, but when he’s awake he wants us to hold his hand.  His pain is at a 4.  All good stuff.

Plan for today is just a lot of rest and walking more.  Also, may get catheter out and moving to oral pain medication.  Also, going to try moving to solid foods.

Pre op Day

So we’re at Duke.  I’d say we’re settled in at Duke, but nobody really gets settled in a hospital.  Eddie slept really well last night, surprisingly.  In fact, I had to go in and wake him up at 10:30 this morning to make sure I could get him out of the house and to Duke on time.  He wanted to stop for lunch so we did.  We giggled and laughed and it was surprisingly relaxed.  Then we headed on to Duke where we had to wait a bit for a room. However, Eddie wanted to go to the cafeteria and have a snack to kill the time.  Again, he was surprisingly relaxed.  In fact, Rick and I talked about how amazingly he was handling things.  I mean freaky amazingly.

We finally got to his room a couple of hours after arriving.  He appeared to be a bit fidgety at that point.  It made sense.  He wasn’t free to just roam around which is challenging for him.  Doctors came and went.  Nurses came and went.  He settled in nicely.  The only time he seemed to get a bit flustered was a lady walked in and drew blood.  He was bothered that there was no warning that he would have blood drawn.  However, in all honesty, it was probably better that way.  If he knew, he would have dreaded it.  Knowing he was having an IV was enough to dread.  A nurse came in and put in Eddie’s IV and she was great.  He seemed to be so surprised that it was so easy.

He has just returned from a CT scan.  They ordered it without contrast because they are VERY careful about his allergies.  The egg allergy is associated with the contrast they use, apparently, so they don’t want to take any chances despite the fact that he’s had contrast before.  The anesthesiologist talked with me quite a bit and told me they are going to be avoiding certain meds for him, as well, because of his allergies.

He also said that they will put a line in their vein before he is put to sleep so they can monitor every single beat and rhythm his heart has every second during the surgery.  It’s much more detailed, timely, and accurate than a bp cuff.   Additionally the team will use ultrasound throughout the surgery because of the unusual veins of Loeys-Dietz patients.  I love hearing how thorough everyone is and so knowledgeable of the syndrome.

He is preparing to take a shower tonight and will wake tomorrow around 4:30 am for another shower before surgery.  He will move to pre-op around 6 am in the morning and should be in the OR by 7:15 am.  After surgery he will go to ICU.  They will try to wake him around 5pm and see how he is doing.  He could be moved out of the ICU tomorrow evening if things are going well, but he will likely spend the night there and be moved to the cardiac unit Friday morning.

Dr. Gaca stopped by tonight and spoke with Eddie and Rick.  I had gone to the car to get Eddie’s things.  Dr.Gaca said they anticipate all things going according to plan, but he has to explain that there is always the chance that they will see that his valve needs replacing during the surgery.  If that occurs, he will have a mechanical valve and be on Coumadin for life.  However, again, all signs point to this being a valve sparing root replacement.

I’ll update tomorrow.  We’ve been so overwhelmed and warmed by the number of people reaching out over the last few days but especially today.  Those prayers and words of encouragement are certainly what explains the lack of anxiety Eddie has demonstrated.  There simply aren’t words to describe it.

Last Day Before Duke

Not much to say, but I feel compelled to write anyhow.  Tomorrow we go to Duke.  E will be admitted and will have the pre-operative stuff and a CT scan done.  He is scheduled for surgery at 7 am Thursday.  We spent the morning running errands and tidying up the house a bit.  Then we had a visit from friends and then we traveled to my parents’ home for dinner and a visit.

E has been in great spirits throughout most of the day.  The visit from friends was appreciated and helpful.   At my parents, he got to choose the dinner menu.  He had a smorgasbord of his favorite Chinese takeout foods that we all sampled.  He even took a picture of the food and us at the table which was a bit unusual of him.  We shared lots of laughter and jokes.  We then had to say goodbye to D who will be staying with my parents and headed home.  I let E listen to his favorite music on the drive home.  He finds it utterly hilarious that he has created a Spotify playlist titled, “Songs Mom Will Hate” and is filled with rap songs containing curse words, and the typical sex-drugs-rocknroll theme.  But I allowed him to play them on the way home since D was not in the car.  He bopped all the way down the road and I had to giggle at him.

I also made a point to tell him how proud I am of him.  It’s easy to nag and discipline or point out the shortcomings of your kid.   However, it’s super important to me that E hears me tell him all the ways I think he’s getting it right, also.  And I sure am confident he’s handling all of this surgery business like a champ.  As I shared with him, there are many adults who deal with far less serious things in far worse ways.  He has demonstrated joy, peace, and healthy self-care most days since April when the doctors explained he would have this valve-sparing aortic root replacement.

I will have a computer with me while E is in the hospital so I can update all of you, our friends and family.  Thank you for your continued support, encouragement, well wishes, and prayers.  I look forward to sharing with you that it’s all behind us and he is on the mend.

There’s a whole lot of guilt involved in genetic conditions.  Sometimes there’s the guilt of passing down “bad” genes, but that isn’t always the case.  Sometimes it’s just a guilt of your kid has to deal with tough stuff and you can’t do much to make it better.   Thankfully, I’m much better at this than I was when Eddie was first diagnosed and a young child.   But I’m still working on it.

With Eddie having surgery in a week, he has nearly run me ragged trying to pack an 11 week summer break from school into 6 weeks.  And we’ve done a good job of it.  We’ve traveled to Florida for the NCAA Baseball Super Regionals that Wake Forest played in, he’s worked two weeks of Wake baseball camps, we celebrated his 16th birthday, he’s gotten his driver’s license, we’ve been to the movies, we’ve rented movies, he’s been swimming, he’s had several friends over to the house, and on and on and on.  It’s been a whirlwind.  Fun, but an exhausting whirlwind.

His dad and I have had a few conversations about his endless desire to go and his numerous requests to do.  As you can imagine, some of these requests now include driving a car with a friend and no parent to speak of.   Many times his requests begin with, “Since I’m having surgery soon and I’ll be healing for so long….” (The recovery period is 6 weeks for the breastbone to heal.  It takes around 2-3 months for most patients to feel 100% again.  No driving for 6 weeks.  )  So it is easy to understand his desire to buy the hottest new sneakers, or to spend every waking moment on adventures with friends, or to go to a water park, or to swim the English Channel, or to leap tall buildings in a single bound, or to hike Mt. Everest but those things aren’t always practical.  Plus, if he gets run down and sick, surgery is a problem.  So it’s hard as hell to tell him no.

But the reality is surgery or no surgery, I have an obligation to parent.  He will recover from heart surgery.  It may be several months, but he will recover.  However, he will never recover from being an ass if I teach him that when life is tough, the world will bend backwards to make you happy and accommodate you.  Because that just doesn’t happen.  It’s a balancing act of saying yes sometimes, but saying no when the situation requires it.   So we’ve had some battles and I envision a few more before he goes in to the hospital next week.  But it’s all good because even when we argue or frustrate each other, he knows I love him.  And that’s way more important than saying yes to any temporary request.

The Thrill of Victory and the Agony of Defeat

Even though I didn’t grow up a huge sports fan, I remember being young and hearing Jim McKay’s voice on Saturday afternoons.  There was the iconic picture of the ski jumper falling as he said “the thrill of victory and the agony of defeat” on the opening of Wide World of Sports.  Sports really do have a great way of reminding us that life has peaks and valleys.  That’s the way it should be.  Never has that been more apparent than in this last year.

Eddie doesn’t discuss his upcoming surgery often.  When the topic does come up, his entire demeanor changes.  He doesn’t appear to let it monopolize his thoughts, but it cannot be avoided all the time.   As the surgery gets closer day by day, it will be challenging to not let it seep into his mind more and more.  Now when it would be so easy for him to become obsessive about the upcoming surgery, he is active in the excitement of post season baseball with Wake Forest.  That helps so much.  It’s just so divinely coincidental to know the timing of it all.

Last year the team went to the regionals but Eddie couldn’t be there as it was in Texas. This year the team played in their regionals games at home so we could attend all of them.  Now the Suepr Regionals are in Florida.  We told Eddie we would make the drive so he could be with the team as part of his 16th birthday celebration so here we are. While his thoughts sometimes wonder to anesthesia and CT scans and heart-lung bypass machines, mainly he is focused on pitching counts and RPIs and batting averages.  It is a blessing.

Tonight’s game was intense, but ultimately did not go our way.  However, here’s hoping that tomorrow goes in our favor so we can continue this post-season fervor.


The Countdown Has Begun

Not sure where to start.  We made it to Duke today so Eddie could meet Dr. Gaca, the cardiothoracic surgeon at Duke.  Everything went as expected.  Dr. Gaca, of course, agrees with the recommendation to have surgery now since many Loeys-Dietz patients have an aorta that dissects between 4 and 4.5 cm.  He agreed that Eddie’s aortic valve looks great, and we do not anticipate needing to have it replaced.  Therefore, valve sparing it is.  However, he went over what would happen if they get in there and see things differently.  Nothing is 100% until they are in the surgery and can see it with their own eyes.

We have scheduled the surgery for July 20.  Eddie wanted it as late as possible so he could enjoy some of his summer break.  Dr. Gaca believes as young and relatively healthy as Eddie is, he would likely be able to go back to school before the six week mark although he will have activity restrictions until six weeks after surgery.  It takes six weeks for the sternum to heal so he has to be careful until then.  Eddie was assured that after six weeks he will be able to resume playing golf and helping with the Wake baseball team.  Of course, that was most important for Eddie to hear.

Dr. Gaca said Eddie will likely be in the hospital a week after surgery.  He will return for his first post-op visit two weeks after being released and then another appointment at the six weeks mark.

Dr. Gaca walked Eddie through the surgical process just as the team at Hopkins did.  Basically, Eddie will be admitted to Duke the afternoon of the 19th.  He will have a CT scan that night to check for any other aneurysms and to make sure there are no surprises in the surgery.  His surgery is scheduled for 7 am on the 20th.  He will be put to sleep and have a breathing tube inserted.  The surgery is anticipated to be about four hours long.  They will put him on a heart-lung bypass machine and remove the weakened and dilated portion of the aorta which will be replaced with Dacron.  His aortic valve will be removed and sewn into the synthetic aorta and then all of it attached back to the heart.  They will then wire his sternum closed.

After surgery he will be in ICU overnight where they will remove the breathing tube, monitor him, and try to get him up a little.  The next day he will be moved to a room.  Each day he will have more tubes removed as he will have numerous things hooked up to monitor and care for him until he has no more tubes and can go home around a week after the surgery.

Eddie is mainly worried about the pain.  Dr. Gaca did not sugarcoat anything, but he was kind and reassuring.  He explained that they will work hard to manage his pain, but some pain was to be expected.  He said that it his experience that younger patients like Eddie do experience more pain, but the healing process is faster, easier, and with fewer complications.

Eddie was pretty quiet during and after the appointment.  He said that it was strange because before today he knew he was going to have surgery, but now it all seems so real.  It was not an easy day for him, but he handled it like a champ.  I am concerned about setting the surgical date two months out as I do not want him to dread and worry in the mean time.  However, with this date he will be able to celebrate his 16th birthday, get his license, attend Wake’s postseason baseball games, and help at two Wake camps this summer.  I know that is of the utmost importance to him, and there is so much about his health he has not been able to control.  Therefore, he is getting control over when in the summer he has it.  It’s really the least we can do for him.

He has expressed that he dreads his friends asking about today’s appointment. I guess it’s overwhelming wanting people to ask and show concern but also wanting to not be reminded.  He said he was achy and a bit sick feeling after today’s appointment because of the stress, but that seemed to get a little better in the evening.  He and his dad played video games and there’s nothing like some video games to help ease a teenager boy’s mind.

I suppose now it’s just a countdown.  Many of you have shared that you are praying for our family.  Thank you for that.  I’ve had meals provided and friends that have stepped up to help us with Deacon.  It’s been awesome.  Thank you for that to those that have contributed, shared kind words, and prayed for us.  I suppose at this point some specific prayer requests would be that Eddie can relax and enjoy the time until then, that his aortic valve and the CT scan does not reveal any surprises, and that as parents Rick and I will know what to say, when to say it, and when to keep quiet.

Do I Have to Function?

Can we be honest?  I’m tired.  Mind-numbing, bone-aching tired.  I stayed up far too late the week of spring break (a terrible habit of mine when the kids aren’t with me), then we had a head-spinning trip to Baltimore, and now I’m trying to organize and anticipate everything ahead of having Eddie’s consultation with a cardiothoracic surgeon.  I’m thankful for all the activity and my to do lists as they prevent me from spending too much time processing that Eddie is going to have open heart surgery in a matter of months.  Distractions are welcome at this point.

But even with these distractions, one cannot totally escape stress.  Even if I’m not focused on the surgery and coming months each moment of each day, it’s there.  Somewhere.  It’s causing this type of can’t-sleep-well-but-still-so-tired fatigue.  This I-slept-X-hours-but-I-don’t-want-to-climb-out-of-bed exhaustion.

Things will be better once we meet with the surgeon and have a date set.  Then there is an end in sight.  The everything in limbo is so challenging.

But I have moments that leave me relaxed and laughing.  In fact, I’ve probably had more smiles and laughter in the last week than in months combined.

Eddie is incredible.  Somehow in someway it was as if he grew up in a matter of 10 minutes time.  He walked into that cardiology appointment a kid that was sweet and sensitive but could be entitled, moody, selfish, and argumentative (like any other teen).  He walked out determined to define his own life rather than be a victim of his illness or circumstances.  He has articulated his appreciation and emotions in such strong and bold ways.  He has asked direct, complex questions about his surgery and is taking the lead in making decisions for himself and his health.

A couple of months ago while I was in a meeting, Eddie was at home with a friend and babysitting his brother.  He shimmied up the gutter onto my roof.  Then he jumped off the roof onto my couch (which he had moved out of the living room onto the front porch) while shooting a basket into the basketball goal.  I don’t need to tell you that this was not his shining moment of maturity and thinking.  In fact, I opined that perhaps the 5 year old should be the one left in charge of the 15 year old after that debacle.  However, with this new person at my dinner table, I can’t even imagine him doing something so dangerous and irresponsible.

Don’t get me wrong.  He’s not perfect (nor am I) and we don’t have a perfect relationship.  I got so freaking frustrated and angry with him yesterday for interrupting me and backtalking.  And today he has a consequence for this.  However, it was over as quickly as it began…..and he isn’t arguing with the consequence.  In fact, he still shared that he appreciated and loved me AND then he posted it on ….. wait for it… media!  WHAT?!

I would do anything….anything to keep my kid from needing to undergo open heart surgery.  However, since it has to happen, I pray that he grows and matures and is a better person for having had gone through it.  And I pray that I am too.

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