Home of the Four Trans

So much has happened since the last time I posted an entry. There is so much to say, but I can steal only about half an hour at a time to myself in any given day, so I will give you all the gist of it. But, I must warn you…this is a long post. You may want to read it over several days

Recovery and Discharge

Since the last time I posted, I had been up at CHLA with Loi until Justin’s discharge day. Justin had learned to feed at such an amazingly quick pace that he was discharged after only 4 days on the recovery floor, while other children who had had the same surgery on the same day as he did were barely learning to latch on. We were so proud of him…and so excited to get out of that hospital! The hospital had prepared our discharge papers, prepared us with CPR training, and were just excited as we were to see us go. But, on the day of discharge, Justin started vomiting after his feeds. I had also informed the Nurse Practitioner that Justin seemed fussy at his feedings that morning, when normally he enjoyed it. She told me she couldn’t tell me why he was fussy, and that she’d follow up with me later in the afternoon to see how Justin was doing with his vomiting. As hesitant as I was to leave with a baby I knew wasn’t all well, Loi and I brushed off any insecurities that we had because we were so excited to get baby home to where he could recover in peace.

The ER

As it turns out, we ended up in the ER at CHOC that evening at 12:30AM after Justin vomited about 3 more times and was getting dehydrated. We were so certain that it was his acid reflux acting up. But, once we got there, the pediatrician had entirely new scenerios for us as to why Justin may be throwing up. Because he is a heterotaxy baby, with his intestines and stomach on the wrong side, and he had just had heart surgery, the pediatrician could not easily determine that the problem was acid reflux. It could very well be that he had accumulated fluid in his lungs or around his heart. It could also be that his intestines had re-rotated around itself, which would call for immediate surgical action to prevent devastating effects on his intestines. Or, there may be a blockage in his stomach where the sphincter was. I was just shocked at all this new information…information that should have been shared with his BEFORE we were discharged from CHLA. As stressed as we were that there could yet be MORE things wrong with Justin, we had to partake in more X-Rays, needle poking, and testing to see if any of the scenarios could be ruled out. Keep in mind that it was then 3 o’clock in the morning, and poor Justin was hungry and just wanted to rest. But, there was never a moment’s peace for him. We had to hold him outstretched on the X-Ray table, while he yelled and screamed, so that they could check to see if he had fluid in his lungs and heart. As soon as that was ruled out, they poked his heel to check his glucose level. Then, the pediatrician came in and suggested that we admit Justin to CHOC so that they could put him on an IV to treat his low blood sugar and dehydration while they monitored his feeding progress and do any other necessary testing. Just as Justin had an IV removed from CHLA that morning, he was getting another one put in. My baby was crying uncontrollably…and there was nothing that I could do for him. I was angry and upset that my baby was crying for help, crying for food, crying for comfort, and I couldn’t do anything for him. I was only contributing to all his pain and discomfort. He’s been through open heart surgery, had his sternum cracked open, and has had more x-rays, IVs, and tests performed on him in his first 2 weeks of life than I have ever had in my 27 years of life. And, you would think, what’s another needle? what’s another x-ray? But, a baby has only one form of communication, and that is crying. He was crying for me to stop the pain and discomfort, and I couldn’t. As a mother, my only instinct is to comfort him, but I couldn’t. He’s only a baby, and could not understand why his needs were not met. My heart ached so much that night, seeing him outstretched on the X-Ray table, having an IV put into his arm, getting his heel poked…all the while crying, screaming, and hungry and tired. So, I cried along with him…

Learning to Feed Again

The next 4 days were spent at CHOC as the GI specialist and pediatrians reviewed studies from CHLA to rule out the potential of Justin needing surgery for his malrotation. It turns out that it was just Justin’s acid reflux acting up, and the doctors prescribed him additional medication, Reglan, to help his food pass through his stomach quicker so that he does not spit it up. The medication helped, and Justin slowly regained his strength and endurance to feed again. The hospital discharged us after 2 days of feeding progress. We did not want to rush out the door this time, so we made sure that on the day of discharge, Justin was able to keep down his food before we left that evening. We’ve been home since August 3oth, and Justin has made great progress with his feedings, intaking more and more each time, almost reaching the ideal goal for his age.

More Surgery

As soon as we were admitted to CHOC, we called the team at CHLA to let them know that Justin was back in the hospital. His vomiting raised great concern because they were afraid that it could be his malrotation acting up. So, they set up an appointment for us to meet with the general pediatric surgeon, Dr. Stein, at CHLA for a consult as to how to deal with it. We met with him yesterday, and the recommendation is to have Justin undergo a laparoscopic procedure to determine if Justin’s intestines are actually malrotated. Because heterotaxy is not fully understood, and the upper GI exams do not fully show the anatomy of his intestines, the surgeon recommended that we have the procedure done, then if needed, he would perform the necessary procedures at that point. If not, then he would close Justin up. While in the past the surgeons felt that they could wait for the emergency situation to present itself, where the intestines have already rotated on itself, before performing the surgery, they now think that it is best to deal with the situation as soon as possible. So, we scheduled the surgery for this coming Monday. Word has it that Dr. Stein is one of the best surgeons as he gained his reputation from successfully separating conjoined twins. I don’t know how that would pertain to Justin’s condition… But, he had told us that he performs 10 of these cases a year, more than any other surgeon in LA and OC. With Justin being so small and just recovering from his last surgery, we are having doubts about him having this surgery, and are consulting with his cardiologist and pediatrician for additional opinions.

The Truth About Love

We continue to get so much support from our family and friends through their words of encouragement and reassurance, as well as practical help especially with helping take care of Nathan. We really couldn’t have gotten this far without any help at all.

Before we had Justin, we knew virtually nothing about children with special needs. We never realized how many of these children there are until we spent our time at the hospital. Up and down the hallways, room after room, floor after floor, were children with special needs. Before we had Justin, we wondered how these families coped with the obstacles and hardships to care for these children. And, after experiencing our time with Justin, and talking to some of the other families, I realized that families like us just deal with it. It all somehow becomes a normal way of life. And, somehow, the parents look past the “special needs” of the child, and just sees the child. We’ve realized through observing that while Justin’s condition is not ideal (to say the least), there are so many other children worse off than he. So, I can’t help but be grateful. I cannot deny that having a child like Justin, who has a heart condition and heterotaxy, and acid reflux, is very difficult, both emotionally and physically for us and for our family. But, there are children worse off than he, and I can only be thankful of what is for Justin, and to have the support that we do. I still have not accepted what is normal for us yet. I look at Justin, and while he looks “normal”, I am always aware that things can change at a blink of an eye. I don’t know when I’ll ever be at ease and think that everything’s going to be OK. I am amazed by how families who have gone through the second or third surgery with their child cope with the entire situation. When I speak to them, it is as if nothing has happened. We spoke to a family yesterday that has a 2 year old girl who has gone through the third surgery who told me that after the first surgery, the second and third are just “normal”, like you get used to it. There was no tinge of sadness or worry in their voices. It was as if their child was like any other child.

I met a mom at CHOC whose child had undergone 7 surgeries in he first year of life alone and with more to come. Yet, when she speaks to me, it is as if this is her life, and it’s normal, and it’s OK. When she saw me crying by Justin’s bedside as they drew blood from his arm and heel, she came over to me to tell me that everything’s going to be OK. She told me her child was in the ICU 5 months after she was born, and she was very depressed at that point. “But, look at her now”, she told me. “She’s big, huh?” She knew that at that moment, I felt hopeless and helpless. Though a stranger, she offered what I needed most…reassurance that everything was going to be OK. I told her he’s only a baby, he doesn’t know anything, and yet he has to endure so much pain. She knew this pain that I felt for my child as she had gone through it herself. She quietly walked away and cried. But, when she came back she told me, “See? You made me cry…But, everything will be OK. Look at my child, she’s OK”.

I looked at her child and wondered what OK meant. This child could not feed regularly but through a tube in her stomach, she could not walk because she was missing two bones in her spine, she could not release her bowel movements regularly, but through a bag on her stomach, she screamed whenever a nurse even looked at her…I mean, this girl had been through 7 surgeries, her veins have been abused with IVs and blood draws, and her mom tells me she’s OK. But, as I observed this mom with her child over the next several days, what may seem awkward and obscene to me, was normal to her. All she thought about was caring for her child, giving her kisses, and joking with her. She never saw the dread in having to care for her child. And, as she spoke to me of her child’s condition, it was in a matter-of-fact tone. She tells me taking care of her is like any of her other 3 children at home. Then, I realized, love really does conquer all. She had such unconditional love for her child that she did not even realize the hardship. At the same time, this child was given so much love that she was still flourishing and happy to be alive despite all that she’s been through. This is amazing.

I had lost hope in the human race. All I saw around me was greed, hatred, and selfishness. But, after spending time in the hospital and meeting these gracious parents, I regained hope. I saw that love and generosity still exists in our world today. With this revelation, I shed a tear. I am deeply saddened by the tribulations that these children must go through, being so young. But, my heart skips a beat when I think of all the love that they receive at the same time. This is not to say that I did not see children abandoned by their parents, left alone in the hospital, crying for help for hours on end. I saw this, and I feel even greater pain for them. But, while the good are few, they still exist. I can only look to these people for encouragement and inspiration because they truly are amazing.

Control

I naively thought that most things in my life could be controlled. Anyone who knows me well enough can vouch for me when I say that I could be a freak when it comes down to it. I thought that if I had my babies before 30, ate well and kept away from the long list of pregnancy no-no foods, exercised, and maintained my stress level to a minimum, by babies would turn out fine. But, I’ve realized now that despite all the “right” things that I did, I cannot control nature and God’s will.What happened to Justin was really just a sporadic event, according to the doctors. They cannot explain why something like this happened. Only God knows. But, I cannot help questioning why, what did I do wrong? I will always carry this guilt with me. But, Loi tells me to look around. There are parents of all different age groups, ethnicities, economical backgrounds who have children with similar conditions to Justin. It is what it is. There is no way we had all been exposed to the same environment, ate the same foods, or had similar lifestyles. Things just happen. With this, I realize that I cannot control everything in my life, that we are all dealt certain cards, and it’s a matter of how we rise above it all that matters most.

This entry was posted on Thursday, September 6th, 2007 at 2:40 pm 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.