Home of the Four Trans

Today was a busy day.

Justin’s been having some issues that we finally found some answers to today.

Limp Right Arm=Symptom of Stroke

Yes, you read right. Justin had a mini stroke that affected the function of his right arm. We had noticed the limpness of his hand while in the ICU immediately after the nurses removed the arterial line from his wrist. The Nurse Practitioner attributed it to a possible hematoma that caused stiffness in that area. Days had gone by, I kept asking, nurses and doctors kept saying it looked fine. Finally, I asked the surgeon during rounds and he called for a neurologist to look at it. Today, it was confirmed through a CT scan that Justin did in fact suffer a stroke to the left side of his brain. According to the neurologist, the blood clot did affect a “good part” of the area. There are too many medical terminology I’m too exhausted to recount.

Good news is: with Justin being so young there is hope that he’ll regain function of that arm. The neurologist pointed out that it will never return to “normal” function, though, that it will always be weak.

A part of me died with the part of his brain

Of course, the news was devastated me. I was angry, but didn’t know who to be angry at. I wanted someone to blame, but it was no one’s fault. This is just how it’s meant to be for my little Justin. Why? I’ll never know.

I couldn’t look at him, or hold him, or anything with him. I felt like he wasn’t him anymore. The person I wanted him to be may not be. I gave birth to this child; this bright, fully functioning child and human intervention messed it up. I thought, what if we hadn’t even gone through with the first surgery, would his heart have healed on its own? It’s like his body is resisting every medical procedure all along the way. Recall the first surgery with the bleeding debacle, then the heart stopping after the catheterization, and, now, all this, after the Glenn.

I thought, what if I didn’t know, and I just brought him home after he was born. How would his life have been different?

I lost a part of my child today I think I’ll never get back. His path has forked. He’s now traveling a road with new obstacles to overcome: physical and occupational therapy to regain use of his arm, meeting with a new group of specialists including neurologists.

What the future holds is now so clear: the unknown. Justin’s experienced many odds against him along his entire journey that goes to show there’s no preparing for the future.

Things are Just Meant to be

Eventually, I got over my self loathing and pitying and opened up my eyes. Things really do happen for reason. I was meant to learn of his condition early to allow myself time to get over the shock and mourning so that I could concentrate on his care after he was born.

Here’s the thing that turned my faith around today: Justin was called for a CT scan 2 days prior to his Glenn procedure because he failed to wake up after 24 hours of being off the sedative, fetanyl. The preliminary results showed no abnormalities. Had we not had the CT scan from prior to surgery available to compare to, it would be unclear as to what caused his stroke: his heart stopping at CHOC or the Glenn surgery.

Pondering the what-ifs, thinking irrationally of what could be allows me an escape from this reality that Justin has an incurable disease. I want so badly to undo what I did to him and the contemplation allows me to live a life (in my imagination) of how things would be if I had just done things a little bit differently.

Truth is, the things happened. I found out of Justin’s heart condition without great effort at a routine ultrasound. I was led to an amazingly talented cardiologist who diagnosed Justin almost to the tee. I was allowed time to prepare–physically, mentally, emotionally. With those events occurring the way it did makes me believe that any other path was non-existent. Regardless of how Justin’s multiple heart defects came to be, his life on this earth with Loi and me was meant to be.

Weak Cry, Raspy Voice=Symptoms of Vocal Cord Damage=Difficulty Eating?

The Ear Nose Throat (ENT) docs were involved to assess Justin’s eating difficulties. The cardiology team were suspicious that Justin’s vocal folds were damaged from either the intubation/extubation process or from the open heart surgery. An objective study (using a scope threaded down Justin’s nostril to his throat) showed that Justin’s vocal folds are still intact. However, the docs did find that the muscle ontop of the vocal folds were a bit swollen which may add to his irritability when feeding. What’s worse is that the acid reflux (yes, it’s back with full vengence) may be irritating this area more. (So, Justin is being treated with more Zantac (to protect the stomach from acid) and Eurhythimiacin (sp?)(an antibiotic to help in the motility of the stomach, helps it empty quicker).

So, what now?

The Logistics

Now that we have some of the loose ends tied away we can prepare to be discharged. The Nurse Practitioner is coordinating some education for us before we leave: management of the NG tube and pacemaker. It will still be a couple more days since we’re now entering the weekend.

TheFamily

The baby Justin we left home with almost a month ago is gone. The baby Justin we’re bringing home has rhythm problems and a pacemaker, an NG tube, and part of his brain damaged. The baby Justin we’re bringing home is a bit loopy, out of it, tired, sad. That smile that I had been longing to see has faded.

We lost a part of our Justin along the way. In moments like these, when I just want to let go of all hope and faith, I hang on tighter. It seems almost unreasonable and irrational to do otherwise. I have to believe that all that has happened to this innocent, unknowing child has all happened for reason. The Great Physician has a plan and I must let it be.

I would be lying if I said I am not sad. I am. Our hopes and dreams of what Justin could have been (a champion golf player, a doctor) died with that small part of his brain.

But, sadness does not overwhelm me because I still have him today.

So, we hope that in a few days, we’ll be able to pack our bags (and our little Justin into his carseat), head home, and start our new lives together.

Remember that scar that everyone was so concerned about in the beginning? You see why it is the least of our worries? There are far more obstacles Justin must face than the superficial. And, those things we pride ourselves over–sigh–those are nothing because they cannot give us that true joy and sense of accomplishment that our little Justin can.

If there is one message I’d like to impart upon you all today, it is: do not take your children for granted. They are these special human beings that need you and love you. The fact that they’re so young, with they’re whole lives ahead of them, that there will be plenty of missed opportunities to make up is no guarantee.

I’d give anything to have that sense of security that tomorrow, when I wake up, Justin will be there. Watching him graduate from college in his cap and gown, dancing a mother/son dance at his wedding, are things that I speak of, but always in fear of never experiencing.

I suppose regardless of his condition, that fear will always be true. My life on this earth is no guarantee either. Whether or not he’ll choose to go to college or decide to marry is no guarantee. The future is no guarantee.

As much as it hurts sometimes to prepare for a future that would include Justin, we do. That worry of whether he’ll be there in that future cannot stop us from our pursuing our endeavors in work and in life to create the best possible for Justin.

Only a small percentage of children experience some damage to the brain when undergoing heart surgery. My son, Justin, with all the odds against him with his physical condition already, had to fall within that small category. The three main risks of open heart surgery are: bleeding, stroke, and death. Justin’s experienced 2/3 already. Am I fearful of what the next heart surgery may bring? Definitely. But, I’m pushing on, letting go of the past, hanging on to today, and dreaming of the future.

We’ve hit a bump, it’s slowed us down a bit, but we’re moving forward with greater momentum. That’s all we can do…keep moving forward.

Please continue to pray for us and our family. Thank you.

This entry was posted on Friday, February 1st, 2008 at 9:17 am and is filed under Heart Disease, Justin. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.