Home of the Four Trans

There’s too much that has happened in the past two days, yet, as always, never enough time to express it all. What I want to tell you all is that my baby, Justin, is so incredibly strong. His life ended not once, but twice, in two days. On Wednesday, his choking episode which led to his heart to stop lasted for 8 seconds. Thursday night, just as we thought we were out of the woods as the doctors were ready to attribute the choking episodes solely to acid reflux, he choked again. This time, his heart stopped for 30 seconds. That’s half a minute!

Miraculously (and, yes, I note MIRACULOUSLY), at each episode, my son revived himself back to life. There is so much doctors cannot explain–especially how his heart just stops without any sign of desaturation and decrease in respiration rate. Both times he came to life himself without any CPR or oxygen. We simply tilted his head back, cleared his airway, and he seemed to come back on his own.

One doctor tried to associate these episodes to acid reflux alone. But, Loi and I know better. With Justin, there is never any clear cut answer. Our Justin is special, everyone. We can truly say there is no other like him. Nothing about him is textbook–his anatomy, the trials he’s faced after every procedure (i.e.; bleeding debacle immediately following his BT Shunt Procedure, choking episode and arrhythmia a day following his cath procedure).

Let me tell you this. A wise man person will acknowledge:

1. what he does not know

2. that Justin is different…there is no other like him, and no book will tell you how to diagnose or fix him. It will take a little piecing of puzzles, and thinking out of the box.

3. that perfection does not exist, and that there is no perfect answer

We are blessed to be among such wise people at CHOC–nurses, doctors, cardiologists. They all worked diligently with Loi and me to create the best plan possible for Justin’s immediate life.

I am fine right now. But, I cannot tell you the immense stress Loi and I experienced yesterday as we were faced with a critical decision of how to maintain our baby’s life. We watched as his heart rate continue to drop with no apparent reason and decided it was time to get a pacemaker in to keep him safe. I was scared, to say the least. Scared of losing my baby. Both times, I had to stand and watch as Justin’s heart stopped, with him laying lifeless and blue in his crib. All I could do was stand and watch as a swarm of medical people crowded around his bedside, ready to resuscitate him back to life. My baby, was laying there, and I felt so helpless.

There’s too much to say, and I must go…I need to return to my baby who is now intubated and sedated in his crib. I watched tears fall from my baby’s paralyzed baby yesterday. He hurt, but he could not cry, could not move. He saw me, with his eyes, through his puffy lids. He asked me, “Why, Mommy.” He’s but an innocent little child, everyone, and he’s walking the steps of a mighty man. And, somehow, everyone was sympathizing with me. He’s the one who was hurting, the one who could not speak and decide for himself. He is the one who cannot understand, cannot comprehend why, why, all these people were hurting him, and Mommy, the one he trusts so much to protect him from all harm, was not warding them off, but allowing them to inflict such pain on him. I had to pass my child over the doctors for a second catherization procedure in 3 days for a temporary pacemaker to be put in. I lost it as I held his head while the anasteaologist placed a mask over his face while he screamed his face and eyes red. He stared at me the entire time through those squinted, screaming eyes, asking me, “Why, why, Mommy. Help me!” He was scared, but had no choice. I made the decisions for him, I had some control. He had none. Yet, doctors and nurses sympathized with me, apologized to me, felt bad for me. They asked me if there was anything the could do for me. “No, just help my child,” I thought. And, they knew that that is all they can do.

Everyone, the doctors and nurses all tried their best. And, the Lord is watching over my family and baby. He told me, “Do not be afraid.” He gave me a sign that everything was going to be OK…whatever that means.

I must go. Please continue to pray for my baby Justin as he will continue to fight for his life. His second heart surgery is scheduled for Monday. Justin will hopefully be transported from CHOC to CHLA today, when a bed is available.

There will be more tests, more medications, more pain from needles, poking, prodding.

Thank you everyone for your support.

Justin had his heart catherization done yesterday at CHOC and the results were very positive. We were told that his arteries have grown, pressure in his lungs were low and  we were all set to move to the next stage. He would still need to stay overnight because the cath was done towards the evening and they needed to make sure he recovers properly. Jennifer stayed back with Justin and I went home to watch our other boy, Nathan.

The next morning our Cardiologist stopped by to see how our baby was doing, and he noticed something unusual with the monitors. Justin was having some irregular heartbeats, so blood work was ordered to determine if he was lacking in electrolytes. The results came back negative, but Justin’s heart was still not functioning normally. After hours of alarms sounding, screens flashing, and countless strangers poking and prodding at Justin, he was finally able to fall asleep inside of his stroller. What happens next is very difficult to put into words, but I’ll try my best.

Basically, Justin was choking (possibly from his acid reflux) and stopped breathing for eight seconds. His heart stopped and so did ours. Every doctor, nurse, assistant, you name it, came running into our room to try to help. Dr. Chang (the Cardiologist) was able to get him breathing again by tilting his head backwards to open up his airways. This was a very scary experience, especially seeing Justin turn blue and knowing he was not breathing at all. Luckily, we were in the hospital when this occured and that everyone here responded so quickly, otherwise this post might have been different.

We are still at the hospital and most likely will be here for a few more days until they can figure out exactly what caused the episode this morning. Could it be the acid reflux? Jen and I are not so certain, however, at this point there isn’t much we can do besides pray.   

Think positive thoughts for me tomorrow, Tuesday, January 8, 2008 (my 5 month birthday!) as I go into CHOC for my scheduled heart catheterization to see how my heart is growing.

We’re expecting a 2-3 hour procedure with a required overnight stay.

For inspiration, look at what I’ve learned to do so far! I continue to make my Mama, Papa, and Big Brother Nathan so proud!

I’m strong everyone, don’t worry.

Love,

JT

I can lift my head while on my tummy!

I loooooove to smile!

Hey, want a staring contest?

P.S.–Not included are pictures of me playing with my fingers, laughing, holding teething toys and stuffed animals, pulling the pacifier in and out of my mouth…I tend to freeze in front of the camera!

Get this. Nathan woke up to hear his brother crying for attention while Mama Jen and Papa Loi were still in a daze from the previous night’s crying fest. So, he took matters into his own hands, ran into our room, grabbed the pacifier by the nightstand and put it in Jusitn’s mouth. How CUTE is that?!?!?! As Loi was finally able to regain consciousness, he unwrapped Justin from his burrito wrap to find 3 of his finger puppets stuffed inside. Apparently, Nathan was entertaining his brother as well. **Sigh** If this weren’t so cute, I’d be obsessing over how germ-y Nathan’s hands were when he actually touched that pacifier… 

I was recently asked if the Fontan would be Justin’s third and final heart surgery.

While the Fontan completes the third stage of the palliative surgeries, it is not guaranteed to be his last. There are too many scenarios I’d rather not dwell upon at this point, but “touch-ups” to his heart may be administered should it fail. Ultimately, when his own heart can no longer work for him, he will require a transplant.

In the beginning, my medically untrained mind could not understand why a heart transplant would not be the best solution to Justin’s half a heart. After he performed the echocardiogram on Justin while in utero, the pediatric cardiologist, Dr. Rebolledo, explained to us that the goal is to have Justin live with his own heart as long as possible. His doctors and surgeons would try every method possible for his heart to work for him with surgeries, medications, and lifestyle changes. A heart transplant would be a last resort.

At the time, I thought that the shortage of donor organs were the main issue for this reasoning. But, through internet research, and some eavesdropping (our hospital room neighbor had a liver transplant), I realized living with a donor organ would be much more difficult than with the half he has. With a donor’s heart, Justin would be required to take a slew of medications (more than the four he’s already taking) including anti-rejection medications that would suppress his immune system, making him susceptible to infections such as pneumonia. In addition, when that heart fails, he’ll require another transplant, which in itself raises new issues from finding a matching donor to eligibility to even get a heart transplant (depending on the amount of scarred tissue that has formed around his heart).

In addition, infant transplant patients face greater complications than older patients, as explained in this article.

With Justin, there is so much to worry about. To give each day its justice, I try not to ponder too deeply into the what-ifs of his future (like whether he’ll qualify for that transplant). I prepare his health the best I can with forming the best team possible for his care. With this, I hope that the surgeon will make the best decisions and the utmost care while performing the procedures as to not create too much scarred tissue. And, that his pediatrician and cardiologist are knowledgeably equipped to monitor his progress, and notice the signs and symptoms of his heart failing before he actually goes into heart failure.

My experience with Justin is each battle is easier to combat when it actually comes. To wonder and dwell on all the possibilities of the future could only bring greater anxiety. So, as always, I take it one day at a time.

The other day, Loi and I were admiring our Justin nestled in his boppy with his large, round eyes, tall nose, cherub lips, puffy cheeks, and soft skin.

Loi asked, “Do you ever wonder what it would be like if Justin were as perfect as he is, but without his heart defects?”

I answered, “We’d probably go on living life everyday as we were oblivious to, well, life.”

Here, I’d like to share a piece I found on Baby Center on the heart baby board written by Erma Bombeck:

THESE MOMS SHARE SPECIAL GIFTS

by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?

Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger. ‘Armstrong, Beth, son, patron saint Matthew. Forrest, Marjorie, daughter, patron saint Cecelia. Rudledge, Carrie, twins, patron saint…give her Gerard. He’s used to profanity.’ Finally he passes a name to an angel and smiles, ‘Give her a handicapped child.’

The angel is curious, ‘Why this one, God? She’s so happy.’

‘Exactly,’ says God. ‘Could I give a handicapped child a mother who does not know laughter? That would be cruel.’

‘But has she patience?’ asks the angel.

‘I don’t want her to have too much patience, or she will drown in a sea of self pity and despair. Once the shock and resentment wear off, she’ll handle it. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world. She has to make him live in her world, and that’s not going to be easy.’

‘But, Lord, I don’t think that she even believes in you.’

God smiles, ‘No matter. I can fix that. This one is perfect. She has just enough selfishness.’

The angel gasps, ‘Selfishness? Is that a virtue?’

God nods, ‘If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says Momma for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.’

‘I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side.’

‘And what about her patron saint?’ asks the angel, pen poised in midair.

God smiles, ‘A mirror will suffice.’

Justin is just meant to be–there’s no other way I see it. The coulda, woulda, shoulda’s make no difference. He’s here, he’s beautiful, and he’s inspiring. He made me realize that there is no day more important than today. And, to truly embrace the fact that tomorrow may never be.

Happy New Year to you all, and remember to LIVE!