Milestone

I am so happy to be writing this post because we have reached a major milestone.  Today Eddie is six weeks post op.  This is a magic day.  Six weeks is the point where his sternum has healed.  Six weeks is the point where he can begin really pushing himself to get stronger.  Six weeks is the point he can begin driving and lift his arms and push and pull things heavier than a two liter bottle of pop.  Six weeks is a magic milestone.

The doctor asked him to hold off until Labor Day to increase his activity and disregard the restrictions, but I’m not sure he’ll be able to wait any longer on driving.  He’s itching to get behind the wheel.

Despite that, he was reminded yesterday and today that even at six weeks, he’s not quite back to normal.  Yesterday he had a couple of sneezes and today he got the hiccups.  If you’ve never been around someone that has had open heart surgery that has sneezed, I can assure you it will make them jump out of their seat because it is so painful.  At this point, he says it’s not as painful as it was, but it still makes him grimace and say “ow”.   Today was the first time he’s had the hiccups since his surgery and it was bad.  As usual, he handled it like a champ, but I’m glad they didn’t last long because it was rough for him.

As for D, he is in his second week as a kindergartener and I am in awe at the transformation already.  He is truly blossoming.  His vocabulary has expanded by leaps and bounds as has his thought process.  He thinks much more of cause and effect and connects ideas.  This leads to some pretty precocious and hilarious moments.  Eddie and I have often had to turn our backs or walk into another room to keep from laughing in front of D and encouraging some questionable behaviors and statements.  Tonight D was having a meltdown because he learned that calling Mama a “butthole” would mean one could not go to McDonalds for a Happy Meal despite having looked forward to said chicken nuggets, fries, sweet tea, and toy for three days.  (Oh, that’s a story for another day’s blog.)  While D was crying uncontrollably on his bed, Eddie and I heard from the hallway, “Oh, my precious McDonalds!   When will I ever get to enjoy you again.  My precious, precious Ronald McDonald!”  Eddie and I skirted out of eyesight as quickly as possible and cracked up silently.  At that moment, I realized I had an adult in front of me.

Right then I told Eddie that I have enjoyed every single stage of his childhood and being his parent.  Yes, there have been some long days, sleepless nights, and fits of rage, but there has always been something fun and enjoyable about each stage…..the infant, the toddler, the preschooler, the elementary years, middle school, and stepping into high school years.  While we have our moments where we can see red and argue and we certainly don’t always see eye-to-eye, I don’t know that there has ever been a more enjoyable stage than to have a conversation with your child like you would an adult.  D is not my only child to have blossomed.  In these last six weeks, Eddie has been so relaxed and honest and funny and strong and humble in ways that I have never seen before.  Had it not been for this experience of surgery and recovery, he could not have become the person he is today.  The maturity, wisdom, and calm I see in him takes decades of life experience to achieve.

I know as a 16 year old there will be days when he will still be a 16 year old with sassiness and a rebellious streak and emotions that mimic a roller coaster, but this will be his center.  Has has changed in amazing and divine ways and that is an even bigger milestone than a bone healing.

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Back to School

Can I make a confession?   I’m having a very hard time with school starting this year.  Students will be filling the desks in my classroom on Monday, and I’ve never had more mixed feelings about it. As a teacher, my room is set up and ready.  My lesson plans are made.  I’m eager to get to know my students.  But as a parent, I’m struggling.

My youngest, D, will be starting kindergarten.  Yes, I know….. every mom has a hard time with that.  After all, he is my last one.  And he’s been with me most of the summer.  But it’s more than that.  I’ve never sent a kid to school without having what felt like tons of meetings and much paperwork.  I’ve never sent a kid to school that didn’t have serious medical concerns that needed to be addressed.

When Eddie went to kindergarten I met with the district’s food nutrition director and the school’s cafeteria manager.  We spent more than an hour reading food labels on all the food served in the cafeteria and going through a month of menus.  We also met with the school nurse, his classroom teacher and TA, the after school staff, and a school administrator.  Once we met with the school’s crisis team.  Before Eddie stepped into that building, people knew him and were watching out for him.  With D, none of that is needed.

Of course, I’m thankful it’s not needed, but it’s also strange.  And a little scary.  Why is it scary?  I have no idea other than this is not my normal.  And being mom to a medically-fragile child is part of my identity, if I’m being honest.  So this is a bit of uncharted territory for me.  Plus, I always knew there were more eyes on Eddie.  Whether it be because he had stomach pains, hives, whatever … there was little doubt something would be going on with my kid and it not be noticed.   It relieves some anxiety to send your kid to school when you know tons of people are watching out for him and have a firm plan of how to handle a situation from a panic attack to anaphylactic shock to chest pains….and everything between.  But D has no need for anything outside the norm.  That’s comforting and a little scary at the same time in a strange way.

And then there is Eddie.  I’ve met with all his teachers, his guidance counselor, and the school nurse — because those beginning of the year meetings and emergency plans don’t go away just because your kid is in high school.   Since he is still healing from his surgery, we will start the year with homebound services.  While his doctor lifts his restrictions at 6 weeks because his sternum will have healed, he is written out for 8 weeks from the date of surgery.  Therefore, going back to school isn’t a good option.  Eddie is good with this.  He has said he knows he is not ready for school yet.  I can see him getting stronger everyday, but there’s still a lot of recovery ahead.

He is asking for his school assignments … which tells me he has seen every Dude Perfect video and played every video game available to him.  He is ready for some mental stimulation, it appears.

It makes me sad that he can’t start the school year — his junior year — with his classmates.  I don’t think he’s bothered by it at all, but I am.  It’s another reminder of the intensity of the summer we’ve had, the surgery he underwent, and the connective tissue disorder he has.  I’m so glad his recovery has been picture perfect, but I’m just sad he had to have the surgery at all.  Couple that with the fact that he only has two more years in high school — two more years — and I’m quite melancholy about the whole thing.  Again, if I’m being honest, a lot of my identity is wrapped up in being a mom….his mom. While that won’t change after his graduation, the meetings with school members and sending in forms that detail an allergy plan, an asthma plan, a self-administer medication plan, and an emergency medical plan are numbered.  Two more years.  Four more semesters.  Sixteen more classes.  Then he’ll be in college….whether that’s close by or far away.  And I won’t have these same back-to-school rituals for him.  And who will be the extra sets of eyes that have carried him from kindergarten through?

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.

 

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