Home of the Four Trans

Melancholy Day

Woke up early morning to head back to the Ronald McDonald for some me time: shower, brush teeth, change clothes, pump. On my way back to the hospital, I walked past the hospital’s construction site–they’re building a new building. I thought of all the chemicals and dirt and toxic remnants oozing from the steel bars and machinery. Suddenly, feelings of guilt I had consciously packed away just months ago spewed throughout me.

You see, while I was pregnant with Justin, I worked in a place that was undergoing some major construction–we were building a banquet hall attached to our existing storefront. The thought of all those chemicals from the paint, dry walls, wood, dirt, and machinery seeping through my body and into Justin’s system pestered me from the beginning. But, this was my place of work; I had no choice (or did I?). And, everyone convinced me that I was just a crazy, over paranoid mom.

So, I continued to work. At 19 weeks of gestation, Justin was found to have multiple heart defects.

Sometimes, I bring this up to Loi. Most times, I hide this guilt that I did this to my baby away.

Today, the feelings are undeniable.

We’re on Day 12 of Post Glenn. My Justin has been in the hospital for 20 days including the time at CHOC and CHLA pre-op. My usually happy, trusting baby now cries at the sight of a stranger approaching him, even if it’s just for an innocent assessment.

They say, “He’s so smart.”

I think, “This is so sad.”

His innocence has been tainted…by needles, tubes, knives, pain, unfeeling people.

When he sees me, he cries. His brow furrows. His body tenses.

He wants to go home.

I want to take him home, away from this place.

I want to take away all his pain, psychological distress, and physical imperfections.

I want to undo all that I’ve done to him.

If only I didn’t work…

The tears, I felt it creeping up from my stomach to my throat. They won’t come out if everyone would just keep away and not talk to me.

I dragged my feet through the hospital towards the elevator.

“Let go,” I tell myself, “Just. Let. It. Go.”

The bell dings when I reached the 6th floor. That smell, ugh, that hospital smell greeted me. **Sigh** My baby smells like it, now.

There is no time for self-pity. I didn’t deserve it. Justin needs me, now.

I turned the corner to my baby’s room, put on my business face, and went right to work.

Discussion with the Nurse Practioner

Congestion

According to the Nurse Practitioner, Justin still sounds a little “wheezy,” But doesn’t seem too concerned. The antibiotics Justin’s been on to help rid of the bacterial infection is up tomorrow.

RSV Shot

Justin is due for his RSV shot. If we are not discharged by the end of this week, I’m having the shot administered at CHLA.

Outpatient Feeding

Justin’s been in the hospital for way too long. I asked the Nurse Practitioner if we could do the feeding thing as an outpatient. She said, sure, if we’re ok with him going home with an NG tube. Loi and I are fine with that if it means we’re out of here!

Day 7

Still congested but Extubated and Chest Tube Removed

The medical team decided during morning rounds that today would be the day that Justin would be free from all his “accessories”. I whimpered in hesitation. Was he ready? He still had A LOT of secretions…

First to come off was his chest tube. A few hours later, his breathing tube…

He tolerated everything quite well. His blood gases, heart, and body seemed to do fine on its own. But, he was still suctioned often to help him remove all the mucus stuck in his throat.

Day 8

Congestion, Congestion, Congestion

Justin’s lungs seemed improved in the x-ray, but he still seemed to be breathing with difficulty. Whatever is in his throat won’t come out! He was awake all day. Come night time, he actually slept and his lungs sounded clearer.

The little monster loves TV! I came in this morning to see Justin fixated on the tube, watching Sesame Street. It was hilarious for me to watch him because he looked like a little man lounging, chilling out. After we came back from reports, my son was still lounging, watching TV, as cool as a cucumber. Then, he dozed off.

Day 9

Here we are, almost at the finishing point, but not quite. There’s talk of him moving to “the floor”–the 6th floor, that is. Ugh, I dread that place. I asked them to reconsider with Justin’s congestion still being an issue. But, he’s so stable heart wise that he’s not considered a critical case anymore. So, we’ll have maybe one more day of one on one care….then, off to the land of the lost.

He’s been intaking over 2 ounces of breastmilk every 3 hours by NG tube, and the attending is increasing his feeds to 3 ounces every three hours, now, by NG tube.

Justin is definitely making progress. But, this congestion thing makes me a little nervous. We’ll keep you posted!

MIRACLES do happen!

Every obstacle Justin overcomes is a miracle. Sometimes, the fact that he gets better from his sicknesses is taken for granted, like it’s normal for it to happen that way. But, let’s be reminded of all that Justin’s gone through that was not “supposed to happen, but did”, and appreciate that he’s doing well–thanks to all the prayers from all of you.

The fact that he’s living today is a miracle. Let’s not take for granted the medical advancements that have taken place over the past decade that has allowed Justin the opportunity he has today.

Ultimately, though, we all know, it’s not up to me or you or the medical geniuses to “fix” Justin. We all have our time. No matter how great of a surgeon, doctor, team I have by his side, his life is still no guarantee.

A mother whose daughter had just undergone heart surgery for an ASD closure (a less severe heart condition than Justin’s) asked me, “So, is your son going to live?,” after hearing of his heart condition. I thought for a moment before I shrugged and said, “We never know these things, you know?”

Regardless of whether Justin has a heart condition, the number of days he has on this earth can never be determined. Monica mentioned in her comment on Post Glenn: Day 6 that this is true even with healthy children. This thought really helped me through the first stages of Justin’s life. I kept my baby because I knew his imperfection did not define the number of days he had on this earth and it was not up to me to determine it for him. I thought of all the tragic things that had happened to the healthy-born people around me (cancer, car accidents, drowning) and thought that when the time comes it will come–there’s no preventing it.

For now, I pray for Justin to help prolong his life. I petition to Him and St. Cabrini to do every miracle they can to help Justin get better. Believe in miracles.

Ah, my little Justin. He truly is full of surprises. Since the last time I posted, he has hit a few rough patches on the road to recovery.

Two Steps Forward, One Step Back

Justin’s physical appearance matches that of a boxer. He looks like he’s gotten into some terrible fight.

Day 3:

Bruised Eye

Huh? Where did this come from? Seemingly out of nowhere, Justin developed a black eye on his right. This has left all the doctors quite baffled. However, the theory is Justin’s coaugulation issues may have something to do with it. When his blood clotting ability is compromised, he has the tendency to develop more bruises, according to the doctors and nurses.

Respiratory Infection: Pneumonia or Bronchitis or Something

Loi was holding Justin for the first time in over a week when Justin’s lungs seemed to give out as he started taking in deep sucks of air. Loi could see Justin’s rib cage as he struggled to breathe in and out.

Justin was re-intubated to allow his lungs to recover. Before doing so, the attending physician peeked down Justin’s airway to find copious amounts of “gunky, gross goop”. There was no other way to describe it, according to her.  A culture was sent out to find if Justin did in fact develop any sort of infection.

Day 4:

Signs of Infection

All signs in his blood work this morning showed that Justin did develop some sort of infection. The cultures did grow some “rods”, but the type of bacteria is yet to be determined.

Gassiness=Crying

Justin passed a lot of stool and gas, and cried in agony every single time. Tried Mylicon, but to no avail. We pretty much just have to wait it out.

Pneumothorax

In the process of being re-intubated, the team had to “bag” him, pushing oxygen into his lungs. One of the side of the effects is developing a pneumothorax where air that escapes from the ruptured lung gets trapped in between the chest cavity and skin. The nurse and I saw the asymmetry in Justin’s belly, and felt some crunchiness from that area–signs of the problem.

Day 5:

Chest tube goes back in…

To drain the air.

I walked in early morning to find the surgical fellow with a mask on and Justin draped. He quickly explained that the pneumothorax had gotten “bigger” which would hinder Justin’s extubation. The chest tube would be the best solution, according to him. I agreed, stepped outside, and waited for 10 minutes before he completed his task.

The remainder of the day was full of coughing and suctioning. Whatever bacterial infection Justin has has caused him to develop disgusting, thick, yellow to red phlegm. The nurses had to suction him every hour, or as he coughed to clear his airway.  The kid hates it, and cries murderously (or so I imagine from the looks for his scrunched, red face), every time.

His eyes were either rolling to the side or to the back of his head. His left hand was always clenched in a tight fist, while his left foot twitched uncontrollably. He looked like a nervous wreck…side effects of the narcotics, possibly? Argh.

Day 6:

Still intubated, but recovering and stable…

Less coughing and phlegm today, thank goodness. He is much more alert because the drugs finally wore off. I finally got to see my baby again, with his piercing brown eyes. For the first time in over a week, my Justin made eye contact with me, and listened intently as I sang to him:

You are my sunshine, my only sunshine/You make me Happy when clouds are grey/You don’t know how much, how much I love you/So, please don’t take my sunshine away.

And, I caught him watching tennis on the TV in his room. Rattling toys, tinkling mobile, and glowing, musical animals couldn’t calm him for the 10 minutes I had been trying. Then, sudden silence. I followed his gaze to the tube. Loi caught him doing this the previous night and turned off the TV. Couch potato in the making…not if we can help it!

The attending and surgeons discussed possible extubation tomorrow if the night goes well. I’m praying that it will.

This is Our Story

Justin is amazing, isn’t he? Goes to show, children are resilient creatures.

I had often been told this while pregnant, and immediately following Justin’s first surgery. And, I suppose, I had this false sense of reality where everything was going to be OK, like one day, he was miraculously going to recover and heart disease would not be a part of him anymore. And, I looked forward to the day when all of his suffering would be a distant memory, never to be conjured up again. I looked to those stories of children who are living with CHD, hopeful that my Justin will one day have a normal, happy life. I relied on medical advancement to continually prolong his life like it was a for sure thing.

True reality is: heart disease will always be a part of Justin and his path is never certain. I am always hopeful that the future will hold many things beautiful and possible for Justin. But, again, I never take for granted what I have today. Each day that I have with him, even if it seemingly is one of our worst days, I appreciate his breathing body and working brain, the chance to hold him and kiss him.

Moms of CHD children to be, no amount of research will ever prepare you for the adventure your little one will take you on. No story will ever compare to the one you will share with your child. Let’s face it: your child is unique. Even if you find another child with the same diagnosis as your child’s, the journey will never compare. Embrace this, moms, and you will be greatly rewarded.

Although our story with Justin is extraordinary, it contrarily emphasizes the ordinary.

The constant theme of every entry is to appreciate each day as it comes, take it one day at a time, take one step in front of the other. Truly, we live each day for that day. I will not think of 5 to 10 years down the line because really, who knows what is going to happen. It is hopeful to think of the future, and plan for the future, but we are constantly reminded to never take for granted what we have today.

We are reminded to appreciate things that we may have otherwise taken for granted: our children, family, friends, health, freedom, food. Being in the hospital, away from home for weeks at a time, eating cafeteria food, bound to a small ICU room, unable to hold my baby without lines and tubes tugging on him, not having all four of us together really, really puts things into perspective.

We do not push through each day just so that we can just get through that day, hoping tomorrow will be better. We live for that day, and appreciate all that God gives us. Because, we know, tomorrow is no guarantee.

So, go ahead, everyone, make your own story. Leave your mark in this world with such profound impact that your legacy will carry on. Justin has and will continue to do so. Proud Mama? You betcha.

Let me just brag here. My Justin is a super man.

Yesterday morning, I came in to an awake, but puffy, closed-eyed Justin, waving his hand about to be held. The other arm was strapped down to the bed to prevent him from pulling out his tubes and lines. I gave him my pointer finger, and he grasped his little ball hands around it. I rubbed it as I watched his little mouth suck air. He hadn’t eaten for 2 weeks, poor baby, and was hungry. But, the feeling of joy overwhelmed me more knowing that there’s life in that little body.

I continued to stand by him, said a little prayer, and shushed him to sleep. After 15 minutes, his blood pressure had gone down, his body was still. I let go of that little hand, and let him rest.

Loi spent the remainder of the day with him giving me reports every hour. I went home to my beloved firstborn, Nathan (he needs us, too!).

The report was, by evening time, Justin was extubated and started on a nutrition drip (TPN). If he breathed well on his own for about 6 hours, they’d feed him breastmilk via NG tube. He was taken off dopamine completely. His fluid output was good, so they gave him potassium replacement. Loi says he keeps looking for Loi’s finger to hold on to…cute, little thing.

By morning, he’s off milrinone and lasix drip. He’s awake, but drowsy. His breathing labored when fed breastmilk, so the docs are going to give him a little more time.

He doesn’t cry or act agitated much. The attending commented on what a good baby he is. Most children fuss crazily requiring much more medication. Loi, proud Papa, says Justin is a pretty mellow kid at home, too. He rarely cries.

We’re so lucky

I know from an outsider’s point of view, our story may seem sad. Some may feel sorry for us. The docs give me that face when they ask, “So, how are you today,” like they’re saying, “I’m sorry.” We’re doing good, I smile back, in a cheery voice. Or, I’ll say, “You know, Justin. Full of surprises!” I make it a point not to cry in front of them when I can help it. The message I want to send is, “Don’t feel sorry for us, or Justin.”

I know it’s difficult to fathom how we, as parents, as people, can feel so fortunate, so blessed to have a child like Justin with such health conditions. But, we do. I look at healthy children, running all about, because, well, they’re all around me– my nieces, cousins, children of friends and colleagues. And, I try to search for that ounce of resentment, of wishing for things to be different. But, it’s not there. I love the children around me, and I’m happy for their health. But, I’m proud of my Justin and all that he is, and all that he’s given me and us. We truly are fortunate to be endowed with such responsibility. Justin, so blessed to be given such opportunity for life, such strength to endure human suffering to show us the true meaning of life. Each day I have with Justin is never taken for granted. I appreciate each moment of his breathing existence, those moments when I can see him move that hand, twitch that food, smile that beautiful smile. I’m proud and thankful for such a story to tell.

So, allow me to say, again: don’t feel sorry for us or for Justin because of his condition. It’s only human of us to feel his pain. There are moments of weakness when we just want to break down and ask why, why this innocent child. But, look more to his strengths, rejoice in all that he’s overcome. Look at him as an example that we may not otherwise have had. Rejoice that he is with us, and for all that he has given us. Smile, laugh, and be happy for him. He has life. He has opportunity. I know this is what he would want from all of you.

I’ve told you before, I’m not letting this boy use his condition as an excuse to not be all that he’s meant to be. Please, I beg of you, to do the same. This heart condition is not a hindrance, but a stepping stone. When you see him, smile. I do, even in his worst physical stage. When you speak to him, be truthful and encouraging, but acknowledge all that he’s been through. He’s experienced life so much more than any of us have. Give him that respect.

Again, don’t feel sorry for him. I won’t allow it. Smile, laugh, and be happy. He is here and he makes me proud.

Thank you for all your prayers. I know, that is what gives him so much strength.

Good things come from good thoughts…and prayers. Please keep them coming.

If you’re going to ask me if Justin is OK, I’ve got to admit, I won’t know what to say. That question is foreign to me; I don’t know what it means to be OK.

We take each day as it comes. Today, I start with a smile on my face, knowing that Justin is making progress. They’ve taken him off the fetanyl already, and slowly weaning him off the breathing ventilator. Blood pressure and lactate levels seem ideal, and his glucose level and blood clotting is good. We’re not out of the liver disfunction woods, yet, but keep praying. During rounds, doctors decided to wean him off of the milrinon and dopamine, so that will leave him dependent on only (only?!? Wow, my mind has really been rewired. I hate medicine!) heparin, lasix, and morphine.

Mind you, this report is given to me by Loi. My mental state cannot handle the hospital and seeing my baby right now. **Sigh** Such a weakling, Loi said to me. I need to snap out of it! I’m stronger than this, he told me. OK…fine! Going to shower after posting. Geez, Loi always knows how to get to me. I always need/want to be the tough gal. No tears here!

The Artificial Pacemaker

It’s in–finally! For 6 days, Justin’s heart had been pacing with help from an external artificial pacemaker connected to leads ran transvenously through his groin to his ventricle. Ideally, it should not have been in for more than 3 days with risk of infection. But, you know how our story goes. Also, because the artificial pacer is only connected to the ventricle, Justin’s heart did not beat along with its intrinsic rhythm, from atria to ventricle, causing his heart to beat a little weaker, which in turned lowered his blood pressure. For days leading up to the surgery, the electrophysiologist, Dr. Barcone (we think he is awesome with all his knowledge), continued to monitor Justin and his rhythm. He adjusted the pacer up and down, seeing if Justin’s heart can beat on it’s own, with his natural pacemaker, hoping to increase his blood pressure. After 2 days, he decided that Justin’s heart was too dependent on the pacer now, and was comfortable beating only with the pacer. The nerves (he has two AV nodes) that sends the signal from the atria to ventricle has pretty much taken a break, gotten lazy, with a machine working for it. He was confident that once he turned off the machine, his heart rate would reach zero, but would eventually turn back on again. “Uh, let’s not try that,” I told him. Ok, well, it would pick up again, but would still be slow. He needed a pacemaker–end of story.

So, sure, the pacemaker is not ideal. But, it keeps him alive, it gives him a chance. The surgeon placed the box below one of his chest tube incisions, toward the midline of his belly. We feel safer now.

Dr. Barcone (can I saw awesome, again?) is quite baffled by Justin’s condition. He understood what was going on, why Justin’s heart would stop, then start again. Typically, when the heart stops, it stops until he is resuscitated. Basically, when the heart stops, he’s gone (”I know!”, I told him with a smile because I knew how special my baby is). But, what he doesn’t understand is how he still made noises, had a cough, and was able to move his feet even when the heart rate monitor read zero for 8 seconds, then 30 seconds. He also does not understand how Justin could be asplenic (no spleen), have 2 AV nodes, and have both weak or not working. Justin does not follow any particular pattern. He was more inclined to believe that Justin was polyspenic (having many pieces of non-functional spleens), with one AV node that was just weak. But, the x-ray showed–asplenic. The EKG showed–two AV nodes. He admitted, as an electrophysiologist, this was interesting. Man, I could hear the excitement in his voice!

Bottom line–he needs a pacemaker. The surgery will be tomorrow, he says. I stopped him, telling him, let’s just get through today. We never know what surprises Justin will throw us. We just need to take it one step at a time, and have a little faith. He nodded.

I’m so proud of my son. He continues to defy the odds. What the? How did we make such a child? I continue to ask myself this everyday. Science can’t explain it. But, deep down, I know, there will never be any explanation. “He’s a heterotaxy baby,” they say, “there is no sense in that.” But, there is sense, we just don’t know it. Have you watched the movie, Signs? Think about it.

Again, I want to thank you all for your prayers. Both electrophysiologists from CHOC and CHLA agree that this has probably been going on, with Justin’s heart stopping then starting again, but we just did not have anything to monitor it. Dr. Barcone does not believe that the catheterization caused any of this (considering that he’s seen some pretty obscene caths done to the heart). He will not attribute Justin’s heart stopping in the hospital following the cath purely to coincidence because Justin did undergo many changes and stresses. But, let’s just say, we all agree that we are lucky or blessed that it did happen the way it did.

So, it’s in, and we feel better for Justin now.

Please continue to pray for our little one. The road to recovery is also a crucial time. Think positive thoughts and send them our way. Do not speak of the past, of what could be, or what should be. Think of today, of now. Please send him comfort and happiness.

Thank you, all.

We’re in our room at the Ronald McDonald House, now, because we just needed to let go a little.

My baby, he’s laying in his warmer, sedated, but aware. His blood pressure goes up as strangers suction his breathing tube, speak around him, and move his little body to his side. I saw his arms and body move in agitation. He doesn’t understand all this pain, I know. He needs me. But, I can’t even stand to look at him right now, let alone touch him. This guilt, that I did this to him, is just too overwhelming. When I look at the deeply bruised chest scar, tubes extending from his chest, his puffy head (characteristic after the Glenn), the breathing tubes, the medications, the bags of blood hanging by his side, it’s like, he’s not even my baby. Just a week ago, he was an interactive, smiling bundle of chubs, who cried to be held, who grabbed my hair, and pulled his pacifier in and out for entertainment. Now, he’s something else. Unlike last time, I really had to compose myself before entering his room. I wasn’t ready to see his body so traumatized, again, with the knowledge that there’s nothing I can do to ease his pain.

I’m sick of lying to him. I keep telling him he’ll get better, that all the pain he goes through will only be temporary. I tell him that the doctors will take real good care of him. But, what goes on behind those white double doors that lead to the OR, I’ll never know. I tell him, “Mommy will be here when you get back,” but never soon enough.

Today, we let him go with the knowledge that his blood clotting factor was not optimal, possibly due to the heparin (blood thinner medication) given to him the night before. But, the anasteatiologist took him anyway, telling us that they’ll give him medication to treat that before having him operated on. That was 10AM. Two hours later, Dr. Starnes walked out of the white double doors. I dared not look in his face, but leaned against the wall, for some support, bracing for whatever he was to tell me. He approached us with a smile on his face saying everything went well, Justin was OK, and should be out of the OR in 45 minutes. We waited. I paced the hallways. Every time those white double doors opened, it wasn’t Justin. 1hour 15 minutes go by with me worried the entire time. Finally, I run into Dr. Starnes, again. He went to check on Justin. Another 30 minutes go by before I see another surgeon, and asked how Justin was doing. “He’s fine. He’ll be right out,” he says. Okay…another 30 minutes go by…where is my baby?!? I just pray, but couldn’t concentrate. Dr. Starnes emerges from the double doors with news that they had trouble running arterial lines onto Justin, but he’s fine. Another 30 minutes pass…WHERE IS JUSTIN? Finally, Loi smiles at his little boy, as he sees him in a crib being rolled out.

“How’s he doing?,” Loi asked.

“He’s…ok,” answered the anasteaologist.

Apparently, he bled a “generous amount”, and it took them some time to control it. They asked us to wait outside as they situated Justin in his room.

Anxious, I went to Dr. Starnes office to ask, “What the heck is going on?!?!? Is my baby going to have to be opened again?!?!?!?” OK, fine, I was more articulate than that, asking him how confident he felt that the bleeding could be controlled, and that JT would not have to go back into the OR. He went to check. We waited outside of the CT-ICU.

Justin had some blood clotting issues in addition to low glucose levels. They were concerned he might have some liver disfunction, Dr. Starnes reported. But, his heart should recover fine, according to the surgeon. **Sigh** What? Liver disfunction?!?

So, baby, I don’t know when it’s going to get easier. I’m sorry. I just pray, and try to be by your side the best I can. I’m sorry there are times when I leave you in that warmer with only a stranger to watch you. But, I promise you, it’s because I love you. Sometimes, I just need to recharge and recompose to be the best mom I can be for you. Baby, you’re so strong. Without me, you’d do fine. But, I’m here to make it better. Don’t be mad, baby, I love you so much. Let’s just try to get through this…

It doesn’t end. And, I’m almost afraid if it does because, then, what would that mean?

My baby, he’s laying still and aware in the warmer…by himself…because I need to rest. I’m tired, physically, mentally, emotionally.

Lord, please give me strength, and ease my child’s pain. I pray to you, please heal him, and let his recover be quick, and as least painful as possible. Lord, Mary mother of God, St. Cabrini, St. Dominic, and all the angels in heaven, please protect my baby from all harm. Please bring him safely back to us, and give him strength. I pray, let his liver be normal functioning. He’s so sweet. He deserves to be happy. Lord, I promise you if you answer my prayers, it will not be in vain. I will make sure his life will be lived to inspire, and prove that miracles do happen. Lord, please hear my prayers.

Even in moments of weakness, prayer gives me strength, and in turn gives Justin strength. Please continue to pray for Justin. He’s gotten this far, and it’s because he’s loved. Thank you so much.

Justin was brought into the operating room at 10am and his procedure should last roughly 3-4 hours. Thanks to everyone who has been praying for Justin. You guys don’t even know how much it means to our family. I’ll keep everyone posted as soon as we know what happens. 

In the past 2 days, Justin has remained stable aside from a few unexpected turns.  Though the events that occurred upset me tremendously, knowing that my child was put through pain that could have been prevented, I’d like to put it all behind us and move forward. In short, Justin had been put on Fetanayl for the sake of his breathing tube. Once it was decided that Justin was breathing on his own anyway, the attending physicians ordered for Justin’s extubation so that he could feed.  Twenty four hours go by, Justin shows little signs of waking up. The physicians begin to get concerned for the possibility of stroke or bleeding, so a CT scan was ordered. **Sigh** I watched as my little 2 foot, 11 lb, 5 month old roll under a whirring spiral machine for about 30 seconds. The entire time, I made sure he heard my voice from afar, to let him know that I was there, so he wouldn’t be scared. The preliminary results showed no signs of abnormalities.  The plan, then, was to wait for the sedative to clear of his body and allow him to wake on his own before extubating him.

The rest, I choose not to repeat. Living through it today was enough, and I’m exhausted. Let’s just say when I called in to check on my son this morning at 5:30am, they continued sedating him, and ended up putting an IV in on his scalp and right hand, in addition to the central line that is already in his groin. They gave me their justifications. But, it was not enough for me to accept what they had done to my son, to put him through all that stress, when it could have easily been prevented had they been more proactive. I gave them a piece of me. I made sure they heard it–loud and clear. My son is in Bed A in the CTICU, and they always begin with him during rounds. This morning, they didn’t. Once they reached us, I made sure they heard my voice, Justin’s voice, that this is my child, a person. That, I was greatly disappointed the way my son’s care was managed. But, that I was willing to put it all behind us. What’s been done is done. We just need to move forward to the next stage.

Throughout all this, doctors and nurses have come to the realization that Loi and I are very involved parents. Medical terminology is like a second language to us. We sit, we listen, we ask questions. We use their information combined with our own to make the decisions. We do not wait for them to make it for Justin. They consult with us with everything now,  knowing that we want to know everything, and want to give our input. Of course, we are limited in what we can do for Justin. But, being there, watching over him when they come in on their rounds, to poke him, to x-ray him, we’re protecting him. We know exactly what is going on, so we pick up inconsistency when there is. There are times when a poker comes even when the order had already been canceled. Or, an attending calls for medication that another had already taken him off of. We make sure we know every reason for their actions. We understand the reasons for the medications, and we question it when need be.

So, here we are, at the tipping point, I guess you could say. He’s made it this far, and we’re praying for every moment up to surgery time, scheduled for 10AM Thursday morning. We’ve had our consult and our share of questions. At the end of the consult, the fellow surgeon who was present for Justin’s first surgery asked if we had any other questions. I told him, “There’s only so  much we can know. What  you do in that room is what you do.” He understood and agreed that it’s difficult to put two and two together. At the end of it all, it’s all about letting go, and having a little faith.

There really is no other way to prepare than to pray–to give us strength, Justin strength. Justin’s bleeding debacle from the first surgery has made him quite a celebrity on the ward. No one has forgotten us because of it, and the fact that Loi was there, well, every single day at every hour. And, so, we pray for

-Justin’s stable condition through the night, and for

-the surgery to proceed in a timely and efficient manner with great success

-Justin’s quick and as pain-free recovery as possible

Mostly, I pray to the Lord, Mary Mother of God, St. Cabrini, St. Dominic, and all the Angels in heaven to watch over my little Justin, to shield him from all harm, to protect him, to give him life and happiness. I want to see him smile again.

Again, we ask that you all pray for Justin at this point in his journey. Let him have strength to endure all that he must endure.

God Bless.

So, of course, the surgery has been delayed. My dear Justin loves throwing us those curveballs. There is apparent stomach distension due to gas in his intestines. For the sake of his safety, Dr. Starnes decided to wait a few days for it to pass before going forth with the Glenn.

Quick Recap of Past Week’s Events
1/8: heart catheterization performed with scheduled overnight stay. Cath. results were favorable.

1/9: hospital prepared to discharge us, but were delayed because echo technician was running behind. Finally, she arrived as did the cardiologist who performed the cath. In a blink, he recognized Justin’s heart rhythm was off. He called for a blood draw to check for electrolytes.Results came back normal.

Justin’s heart continued to go in and out of rhythm for several hours as EKG tests were performed. By 5 pm his heart stopped for 8 seconds while sitting in his carseat. Main cardiologist attributed to acid reflux. Debates of how to handle the situation– with Zantac or pacemaker–ensued. With hesitation, we decided to give Zantac a try. Took Justin off feeds. Evening progressed smoothly without any episodes of arrhythmia.

1/10: Justin put back on feeds to see how his body would react. Dysrhythmias returned, but patterns were of greater concern to the doctors because he appeared to have heart block (arterial block). But, at the end of the day, he was still diagnosed with only acid reflux. I was almost ready to believe it because I desperately did not want to believe that anything was wrong. But, I knew. Something wasn’t right. At 1:30am he stopped breathing again. Took him off feeds.

1/11: Main cardiologist still refused to acknowledge that Justin’s heart may be of issue. Blamed everything on acid reflux. Justin continued to starve as we waited for a GI doc to arrive to perform a diagnostic of the Ph levels in Justin’s esophagus to confirm or deny acid reflux. Doctors and nurses discussed getting him trasnsferred to CHLA so that they can decide what is best for him.

Unexpectedly, his heart rate dropped dangerously low again, although he had had nothing to eat for 9 hours. I made a clear choice to have a pacemaker put in.
But, with Justin due for his Glenn, nurses and doctors thought it was best to transfer him with a temporary pacemaker with an external lead and have the permanant one put in the same time as the Glenn. Heartbreak and tears ensued as I gave up my baby to strangers a second time in three days. Justin was intubated and sedated in preparation for transport.

1/12: waited for CHLA to open up a bed. Didn’t happen. Justin was relatively stable.

1/13: Justin’s heart was overriding pacemaker. Adjustments to machine were made. Continued to wait with promise of tomorrow pick up.

1/14: CHLA arrived at 5:15a to CHOC. Returned to LA by 7:30am. Justin appeared to have stomach distension, so the waiting game begins.

How We’re Coping

With Justin’s condition, there is no perfect answer. I’ve been told more than once that this is just a great balancing act. Nothing we do is ideal for him. We’re never in an ideal situation–ever.

Although he has the temporary pacemaker in now, which allows him to be relatively “safe”, there are risks to having it in for a duration longer than 3 days. So, all we can do is sit tight and pray, as we wait for his body to release some of the gas.

I finally got some rest at the Ronald McDonald House last night after being up for over 30 hours. Loi thinks it had been over 48 hours. But, we’re so overwhelmed, sometimes we can’t think straight. I forced myself to leave Justin’s bedside, and agreed that we both should get some rest. Because, what good are we too him if we get sick.

This is funny to say, but sometimes, I think my love for Justin is like teenage lust love. It’s the type of love where you’re so overwhelmed by deep passion for a person that you can’t eat, can’t sleep. My stomach is always turning. Sometimes, I get butterflies just looking at him and thinking of our future together. When I tell him I love him, it makes me tingle.

I see all these CHD babies making it through their surgeries, and going forth with their lives. I want to look to the future with great hope that that will be Justin one day. But, the one thing Justin has taught me that I can never ever deny, ever again, is to take it one day at a time. Even as he lays still and sedated with a breathing tube down his throat, I embrace that I still have him, at that moment. I talk to him, hold his hand. They prick him, yet, he does not move, because he is so sedated. But, I do not forget that he can feel pain. I tell him what a strong boy he is, and how proud I am of him. His eyes are closed. His body is still. But, I know he can hear me.

Thank you, again, everyone for your support. It means so much to us.

Now, we are headed back to the hospital for another day. Pray for us.

P.S.–Do you believe in miracles? I asked the attending physician yesterday this as St. Cabrini’s relic mysteriously disappeared from Justin’s crib. I could either believe that someone stole it, or that she is out performing a miracle for my baby. We searched every trash can, turned over every blanket, scoured the entire floor–nothing. What do you choose to believe?

We’ve come to a time in Justin’s journey where all we can do is pray–pray and have faith that all he must endure is for great purpose.
We pray with great hope that our prayers will be answered.

Justin had a rough morning yesterday. Throughout the day, the anxiety level was high, with us not knowing which turn Justin’s heart was going to take. Doctors deemed him critically stable. But, those of you who have followed our blog know that Justin and his journey can be so unpredictable. He really is full of surprises.

Loi is much stronger than I am. He can tolerate the constant beeping and alarming of the machines whenever one of his vital signs dip or rise. I, on the other hand, find my breath caught in my throat, with difficulty to breathe. Sometimes I watch. Most times, if a nurse does not answer quickly enough, I look for one. I pace…a lot. Sitting still is almost not an option. I must do something, anything for my baby. So, I stand by his side, talk to him, pray for him.

Today, I told Loi I didn’t know if I could handle it…the hospital, the anxiety of not knowing the unknown. I had to leave.

Faith brought me to my church, looking for some comfort for myself and my family, but especially for Justin. After praying to Joseph, Mary, and Jesus for our strength, I wandered. I needed guidance. A stranger took me under her arm as she saw tears streaming down my eyes when she asked me if everything was OK. She said, “You don’t know me, but let me help you.” She let me talk as she listened. I’ve been told to be strong…and, I try, so desperately. Tears are the last resort, when my body can no longer handle the immense emotional buildup. My baby’s life ended twice, yet, I did not shed a tear. I reclude to a corner of some empty room and release. I am told to be strong. And, I try. But, sometimes, it is too much.

I asked the parish father to visit us and Justin at CHOC for some guidance and prayers. This evening, he arrived with a relic of St. Cabrini’s habit. He told us to pray for every miracle. St. Cabrini is known for healing children and parents who are unable to conceive. He prayed for Justin’s strength and recovery, and for all the angels and St. Dominic to watch over him.

We pray–Loi silently, while I speak to Justin, the saints, the Lord.

CHLA is scheduled to arrive for Justin at 5AM this Monday morning. His surgery is scheduled for 10AM.

I beg all of you to please pray for our little Justin. He deserves everything because he has given us everything.

Thank you again for all your support, love, and prayers.

God bless.