Counter reset on January 13, 2000. Thank you for helping get Justin's story to more than 400 people on the web!

Written By Melissa Crocker From 1987 - 1993

Justin

In 1987, our son Justin was born with Arthrogryposis Multiplex Congenita. Unless you're familiar with this term, you know as much as we did the day he was born. You know as much as the doctors did who diagnosed him. But that was six years ago, and many doctors ago.

No one ever told us he wouldn't walk, or sit, or speak. No one expected him to live, much less those other things. So right from the start we fell into the parental role of defying doctors. The role that empowered us to say, "No, that's not right, try something else." And we've said that many times over the past six years. There are still those doctors that look at me like," What could you know, you're only a mother." Only a mother. Only a mother of a child who can't yet speak: who else can tell you that he's hurting? A mother of a child that can't yet walk; does their back ache from all the time spent holding up that little person? Only a mother who tries to do what's best for the child she loves so desperately. A mother that doesn't have the medical expertise of these doctors, just a faith that they'll help you in your battle. Only a mother.

My pregnancy with Justin went fairly uneventful. I say fairly because according to my records it was uneventful - no accidents, or illnesses. But to me there were some things that I would call eventful. Early in the pregnancy I started to get the feeling that something wasn't quite right. Remember, I'm only a mother so what did I know? If the medical professionals I was dealing with asked all the right questions and performed all the right tests, then why didn't they discover what was happening to my baby? The only explanation I have is that it was meant to be. I don't think there is anything that can be done about missing amniotic fluid. It's a miracle this baby developed at all!

Because my husband was stationed near an Army Medical facility, I had to go to the OB clinic there. I went in at sixteen weeks for a fetal heart check, because I hadn't felt any movement up to this point. But there was a strong little heartbeat, and when they put on the monitors it detected movement that evidently I couldn't feel. "Everything's fine Mrs. Crocker." They said.

At twenty weeks the doctor scheduled an ultrasound. The technician took all the measurements and noted them in the computer. When she came to the point where she needed to measure the fetus' head, she couldn't get the wand in the correct position to get the measurements. She had to tilt the table, and practically dump me on my head to get the right angle. But everything checked out all right. Normal in all areas. Normal amount of amniotic fluid noted. "Everything's fine Mrs. Crocker." I can't recall if, at the time I thought all this to be strange, but now...

We got a still photo from the ultrasound and now, seeing Justin next to the picture we see the anomalies in his face and upper extremities, but then, seeing his hands tucked up under his chin it looked cute.

I went up to the hospital numerous times over the next few months. Something just wasn't right. I could feel it. This baby wasn't moving like my first. They told me not all pregnancies were alike. What did I know? I was only a mother. I would voice my complaints, they would hook me to the monitors, and the baby would move enough to please them. So, they would send me home. "Everything's fine Mrs. Crocker."

Once after they put on the monitors and stimulated the baby, evidently not enough movement was noted because they elected to do another ultrasound on the spot. Finally! They got me all prepped with the gel on my abdomen the doctor had the wand positioned over me, when we were interrupted. She got called to do an emergency C- section. No one came to finish the ultrasound or even tell me how long of a wait it would be. Finally after an hour or so, I got mad and left.

Except for the frequent visits to the hospital I had a great pregnancy. I only gained twenty pounds; I felt and looked good. But that little voice in the back of my mind would not go away. "Everything's not fine." It kept saying. But I was enjoying being pregnant, enjoying the daughter and husband I had, simply refusing that anything could disrupt the world I lived in, little did I know the threads that held everything together had already begun to unravel.

On September 9, I went to the OB clinic for a scheduled appointment. Since I was so close to my September 15 due date, the doctor wanted to do a pelvic exam. During the exam the doctor was pressing on my abdomen while he felt inside. I could tell something was wrong; he was pressing so hard. He checked again, then quietly told me to get dressed. When he came back into the room he told me that I needed to go home, get my husband, and come back tonight. He wanted to induce my labor. Why tonight I wondered. My blood pressure was high, and they were concerned about toxemia, but why couldn't I go home, get a good nights rest, then come back in the morning? I had these thoughts, but I didn't voice them. Doctors were next to God in my opinion. That opinion changed drastically with the rest of my life after that night.

They induced the labor with Pitocin. After that ran for two or three hours they decided to speed things up by rupturing the membrane. Breaking my water. The doctor tried, but the membrane wasn't responding to the puncture, so the doctor went in and stripped away a piece of the membrane, but there was no gush of fluid, no rush of water that I was prepared for. But you know, "Everything was fine."

My labor progressed very slowly. It seemed the stronger the contractions were the weaker the baby's heartbeat got. He was going into distress. Oxygen helped some, but this baby needed out soon. I finally dilated to the point where I could start pushing, then after what seemed like hours his head was starting to show. I was pushing so hard I was feeling faint, but I wanted this to be over. I was exhausted!

Okay, the head was out, the shoulders, was it all right? Why did its arms snap back like that? What's wrong with his foot? "Just lay back Mrs. Crocker." After all that I must have let the exhaustion take over somewhat, because the next few minutes aren't too clear. Is it a boy or girl? I remembered asking. A boy! We have a son! Even as tired as I was I knew something was wrong. No one was smiling and laughing. No one said congratulations. No one said everything's fine Mrs. Crocker.

I didn't get to hold him, but they did show him to me. All wrapped up in a blanket he looked fine. Where are you taking him? NICU. I went to recovery and lay behind a curtain for two hours. Except for the attending nurse no one came to tell me anything. Was my baby all right? Was my son alive? Finally my husband came down to see me. He stepped into the curtain and I could tell something was wrong. He couldn't even speak. He laid his head on my chest and cried, heart wrenching sobs. Now, my husband is a big, strong, man. A sergeant in the Army. Sergeant's do not show too much emotion; do not cry. At that moment I knew that my life would never again be the same as it had been before.

He told me that something terrible was wrong. The doctors were still running tests, because they weren't sure what it was. They knew that I didn't have enough amniotic fluid, and that the walls of my uterus had compressed the baby as he grew, but they weren't sure what all these effects could have. For now though, he was stable. He was on oxygen, but he was breathing on his own.

The next few days are hard to recall, but I'll never forget the first time I saw him. Justin. My son. I went into the NICU and stood outside his door until the nurse left. There he was. No blankets this time. Just a little twisted baby with lots of tubes and wires hanging all around him. I walked over to his bed and reached out to touch his foot. I stood there stroking it for a long time, maybe gathering courage I don't know, but when I saw his face, those big blue eyes looking all around, the love that I felt overwhelmed me. This was my baby. My son. And he needed me as no one ever had.

The diagnosis came days after his birth. These doctors had never seen a baby like Justin. All the information they were giving us came out of some medical book that we could have gotten anywhere. But, as I said, they were next to God, and no one better than these doctors could tell us what had gone so wrong with our son.

Justin improved rapidly over the next week. There were some other problems they had discovered. The roof of his mouth was very high, and his tongue was small, that made it hard for him to suck. So to help him save some energy they elected to gavage feed him. Every four hours around the clock we took a little tube, stuck it up through his nose and kept pushing until it reached his stomach. Then we would attach a syringe to the end of that tube and pour his formula in. We had to learn these techniques before we could take him home. It was awful. He would cry and gag. I hated doing it. My husband got so smooth at it that he could do it without even waking him up! That earned him the official title of feeder.

We took Justin to the Shriner's Hospital for Crippled Children where they started casting his hands to try and straighten them. Let me explain about what effect the lack of fluid had on Justin's body:

When he was born, he was actually stuck in the fetal position. His legs were drawn up close to his body; his arms were pressed against his chest; his hands tucked underneath his chin. The round shape of my uterus had molded his feet into rockers, like those of a chair. His spine was also effected by the roundness of my uterus. He had severe scoliosis. It seemed this syndrome effected every part of his body. Physical therapists came in and taught us how to do passive range of motion exercises on Justin. We tried to make a game out of it, but he was on to us already; he hated it! Just when we were getting into the swing of things with Justin's new orthopedic doctors, my husband got the news that we were getting out of the military. We were going home!

Home ended up being Toledo, Ohio. And what better way to get aquatinted with a new town than in the hospital. Justin had lost too much weight during our trip across the country. Diagnosis? Failure to thrive. We had stopped gavage feeding him before we left the Army. We were feeding him on demand. The doctors felt comfortable with this as long as he continued to thrive. We didn't resume the feedings. Evidently the new doctors ruled out the official failure to thrive diagnosis. Justin gained some weight while he was in the hospital, and the doctors attributed the earlier weight loss to the flu. The hospital stay did get the resource ball rolling. I had the names and contact numbers to every agency in that area that might be able to help us in any way. Justin did really well during the time we lived in Ohio, he had extensive physical therapy, and the Chicago unit of the Shriner's Hospital was following his orthopedic care.

We stayed in Toledo for about a year, then my husband took a new job that transferred us to Atlanta, where Justin's orthopedic progress really took off. We enrolled in Georgia's Crippled Children's program. Not every state has a program as thorough as Georgia's. We were lucky to be there. We started physical therapy and were lucky enough to get with the best therapist on staff. Carol worked with Justin diligently week after week, and we continued to see tremendous progress. Justin was growing by leaps and soon the doctor assigned to our case felt he was big enough to withstand surgery.

Justin had to have urology surgery earlier that year to repair bilateral hernias. He'd had no problems with the anesthesia, so his orthopedic doctors expected the corrective surgery to go as well.

Although Justin needed extensive orthopedic, corrective surgery, we agreed with the doctors that trying to do something to straighten his legs should be priority. He was already starting to kneel on his legs, and even trying to scoot around in that position, so getting his legs straight would help him eventually walk. Did we dare hope?

The surgery went well. When his doctor came to talk to us he really didn't seem too optimistic. He said he'd done what he could. Justin had some webbing in the joints behind his knees that limited the amount of stretching they could do. Even though the soft tissue released well, the arteries, veins, and nerves could only be stretched so far.

We went to his room to wait for Justin to come up from recovery. When I caught sight of him, my heart broke a little. His face was puffy from the anesthesia, and his legs were thickly padded and wrapped in gauze from his toes to his hips.

In addition to releasing the soft tissue in Justin's legs they had to do some corrective surgery on his feet. In rocker bottom feet, the heel bone rotates downward and the toes curl up leaving the bone in the middle of the foot to poke through the bottom. They took that bone out then rotated the other bones to the proper position and placed pins through his feet to hold them in place. All that was a lot of surgery for such a little guy. He was two at the time. But he came through it with flying colors! We went home two days later. As soon as we got home, Justin tried to stand on his feet! The determination he's always showed has and will be his saving grace. But we needed to wait a little longer than three days. A few weeks later they took off the original casts and began serial casting. Every week for the next ten weeks we went in and got new casts put on. Every new cast gained us a few more degrees of range of motion. We were thrilled! At some point Justin was given the OK to stand on his casts. He took off! They gave him a little walker, and he hasn't slowed down since!

The tenth week before the new casts were put on they made molds for long leg braces. These would replace the casts in the future. Even though Justin's legs were nearly straight his legs weren't strong enough to support the weight of his body. But, he did just fine anyway.

We lived in Atlanta for nearly two years, but my husband's career was taking off, and we had to go where the promotions took us. Next stop: Montgomery, Alabama.

Alabama's Crippled Children's program wasn't as complete as Georgia's so we re-enrolled him in the Shriner's system. This time we went to the Greenville, South Carolina unit.

The doctors followed him closely for the next six months. During that time Justin outgrew his old braces and before the new braces could be made he had lost range in his legs and they had to do another leg procedure before he could get new braces. The foot surgery also had to be repeated; evidently the first surgery hadn't removed all the bone. It seemed as though we were back to square one.

Through all the therapy and surgery Justin's spirit never faltered. He was a bright, sweet little boy, and he crept beneath the skin of everyone that came in contact with him. He was stealing hearts all over.

In January of 1991 our surgery date arrived. The doctors decided that a bony procedure would have to be performed this time because of all the scar tissue on the back of Justin's legs. They were going to do bi-lateral femur ostiotomies. They were going to remove part of Justin's thigh bone, then put it back together at a hyper extended position to give the illusion of a straighter joint. It was hard to understand what all that meant, but if it would help Justin to continue to walk I was all for it. I still had faith in the doctors to do what they could to help my son.

After they took Justin up to the OR, they called me to say they were ready to start and they would call again after they began. Two hours went by. I relied heavily on the nurses in Justin's unit for support. The Greenville unit of the Shriner's Hospitals is a very small, intimate hospital. After you've been there a few times you feel like some of the nurses and other staff have become friends. It feels as if there is not only a medical interest in your child, but a personal one as well.

One of my favorite nurses came into my room and asked if I had heard anything yet. I hadn't. I was wondering if they weren't having some sort of problem getting started up in the OR. My nurse said that in all her years of nursing she had only seen three times where the anesthesiologists weren't able to get the patient intubated. Just then the phone rang; I held up four fingers to the nurse.

They had been trying all that time to intubate Justin, to no avail. They couldn't even see his trachea using fiber optics. The doctors were frustrated. This course of events definitely changed the game plan.

The doctors later explained to me that it would be impossible to perform the extensive surgery Justin needed without a stable airway. They called in a specialist who agreed with them; Justin would need a tracheotomy for any surgeries that he might need. That was one of many tremendous blows that were to come that year. It was the worst year of my life.

After consulting further amongst themselves they brought their plans to me. The doctors said they wanted to do all the surgery Justin needed at one time. That included the foot surgery, the procedure on his knees, soft tissue releases they thought he needed in his hips, and spine surgery. The idea about trying to correct his hands surgically also came up. Even though all these procedures posed a great risk, the doctors felt repeated tracheotomies carried an even greater risk. We came up with a plan of action and placed Justin on the waiting list for a surgery date.

We ended up back at the hospital the first week of September. The ENT specialist would perform the trache on Thursday, and the corrective surgeries were scheduled for the following Monday. The morning of the surgery I was as prepared as I could be. Having never experienced anything like this before, there was no way to really prepare myself for this type of surgery. I got the call that everything was going well, and they would keep me posted.

The surgery only took about three hours total, and after I got the final call that Justin was in recovery I asked if I could come up and see him. As I said before this was a very small hospital. I think the people involved felt they knew me well enough to allow me to come up so soon after his surgery. Usually the parents aren't allowed up in the recovery room. Nothing could have prepared me for the sight I saw when I went into that room.

My little boy was tied to the bed with more medical equipment around his little body than I thought possible. As I walked closer to his bed I heard these awful noises coming from him! In his neck was a bloody, gaping hole. The trache tube was in place, but the hole was so large. I just stood there for a minute; looking at him. "What have I done?" I thought to myself. "What have I done to my sweet little boy?" Just then those eyes opened and looked at me. Those same eyes that stole my heart four years ago. The eyes that spoke in place of his voice that had been taken by the trache. "Mommy." They said. He was so scared. And so glad to see me. Some sort of instinctual strength that we all possess took over. I wrapped my arms around him and said, "It's all right now Sweetie, Mommy's here." I know my voice trembled; I was choking on my tears. My heart was breaking into a thousand pieces. All I could say was, "I love you, Justy." Over and over.

After he was stabilized they moved him down to a "Step Down" unit. It's a four bed unit with two nurses. Justin was the only one there at the time. He did just great! That night he was asking for ham and cheese; his favorite at the time. Any complications he had that night were normal effects of the anesthesia. He was doing okay.

The next morning they did a routine chest X-ray. While the doctors were looking at the film one doctor said, "What is that?" Another said, "I know what it is, but what is it doing up there?" Justin's intestine had slipped into the chest wall. They suspected a diaphragmatic hernia. A hole in his diaphragm. They rushed him next door for an emergency upper GI and luckily the weight of the barium in the intestines forced them back down into the abdomen, so an emergency surgery wasn't going to be necessary. This definitely changed the game plan. His orthopedic surgery was canceled and a diaphragmatic hernia repair was scheduled. On Tuesday, September 10, Justin's fourth birthday he underwent major abdominal surgery.

Because the Shriner's hospital was strictly an orthopedic hospital, Justin was transferred to Greenville Memorial for this operation. So, there I was, in unfamiliar territory, all alone while my son was being operated on by some doctor I didn't even know. About five hours later the surgeon came in and told me that everything went well. They had repaired the hernia and another defect in his abdomen, and he was doing great. I couldn't wait to see him!

He was in the Pediatric intensive care unit, but fortunately the visiting hours weren't restricted and I got to see him right away. By now I'd gotten used to the trache and all the equipment that went along with it, but there were more tubes and wires that I wasn't expecting. He had an NG tube in his nose, two IV's, monitor wires and a chest tube that seemed to be pulling nothing but blood out of his side. It was so traumatic seeing him lying there so still. He didn't smile when he saw me. He just closed his eyes in what seemed to be relief. As if to say, "Mommy's here, it's okay now."

He stayed in intensive care for three days, then we went back to the Shriner's. It was time to re-shuffle the deck and see what card would be drawn this time.

Sometime during the next few weeks my husband went on a job interview in Raleigh, North Carolina. We had talked about this job offer before Justin went in the hospital, but with all that I'd been through with him, the things that were going on at home seemed far away. My husband called me from Raleigh and said, "I took the job, we're moving in thirty days." I can't remember what my immediate reaction was. Looking back, how could it have been anything but shock? The doctors were trying to decide what to do; Justin needed time to recover from the abdominal surgery, but the trache was already in. What were we going to do? I could either leave Justin at the hospital to recover while I went home and moved, or, take him home and move while trying to deal with his trache. The second seemed the best of the options I had, so we took Justin home with his trache and half the hospital's medical equipment. It wasn't easy, but we pulled it off. It's hard to remember the details because I think I was operating by sheer instincts. The situations we found ourselves in just kept getting worse and worse.

A few days after we moved in Justin ran into trouble. He had to be on humidified oxygen 24 hours a day, and to monitor his oxygen levels he was hooked up to something called a pulse oxymeter. It measured the oxygen saturation level in his blood. The reading on this monitor should stay above 95%, but that day the percentage dropped to 73% and it wouldn't come regardless of what I did. I called the respiratory therapist and he told me to call 911 now, but he was on his way. Justin was becoming lethargic, and was starting to turn blue. There wasn't anything else I could do but wait. The paramedics got lost; the respiratory therapist got there first. Justin was nearly unconscious.

The therapist knew immediately what the problem was. The humidity machine was set too high. He was getting too much moisture and not enough oxygen. He turned the humidity off and cranked up the oxygen. Justin responded immediately. His color came back and his monitor came up to 100%. By the time the paramedics arrived Justin was fine! It was almost comical at that point. We called his doctor at the Shriner's to let him know what happened but he wasn't too concerned if Justin was all right. The paramedics offered to transport him to the hospital, but his vitals were good and he seemed fine.

I wouldn't ever be the same. I've never been so scared in my life. I felt completely helpless. But Justin was okay, and that's all that mattered at the time.

About two weeks later it was time to go back to the Shriner's and see if we couldn't get this operation done. The plan changed several times before the actual surgery took place. At first the doctors wanted to do all five procedures. That would include the spinal fusion, the soft tissue work at his hips, the bony procedure of the femurs, total reconstruction of his feet, and the surgery to straighten both of Justin's wrists. All these surgeries performed at once would mean Justin would be in the operating room for twelve hours or more. Because so many doctors were involved with his case, there were constant conflicts of opinion. Somehow, they decided to do the leg procedures and save the others for another time. Apparently the risks involved were greater in doing all those procedures than in performing another tracheotomy. As it was the procedures they chose to do took eight hours. Imagine if they had done the spine fusion and the corrections to his wrists.

The doctor came down and told me that everything had gone well. They had to do more work on his feet than expected, but they were pleased with the results. In two weeks they were going to go back in and reposition his feet because although the soft tissue responded well to the releases, the skin would only stretch so far. In two weeks the skin will have had time to adjust and they would be able to get even more range of motion.

Everything went as well as could be expected over the next few days. Four days after the surgery the first red flag went up. Justin was still in a lot of pain. He was still on Morphine. Every breath was an, "Ow, ow, ow." It was awful. For the first time in four years I heard someone say, "Everything's fine Mrs. Crocker." That should have been enough to warn me, but I didn't question their opinion. They were doctors; I was only a mother.

Five days, six days, seven days went by. Justin still needed Morphine to control the pain. The doctors insisted everything was fine. They did a lot of work on his feet. They expected this. I didn't. I couldn't let another minute go by. Something wasn't right.

On the eighth day Justin started running a fever. They did routine blood work and discovered his white count was elevated suggesting an infection somewhere. Since he still had a sub-clavian IV in, the doctors thought that was a likely source of infection. They pulled that and started IV antibiotics. His white blood cell count came down so they thought the problem was solved. Except Justin was still in terrible pain. Finally the doctor agreed that something was wrong. She cut holes in his cast along the incision site on his feet. Everything appeared normal. There was some tissue breakdown, but they expected that and it didn't look too bad. I felt a little better. At least they had done something.

A week later they went back to the OR to reposition his feet and reinsert the surgical pins. We decided to go ahead and try a procedure to straighten Justin's left wrist. If the operation was a success, they might do the same thing for his right hand. They did the wrist procedure first, then opened his cast on his legs. No one was prepared for what they found when they took the tops of the casts off. There was severe tissue break down and wound infection in his feet. They cleaned the wounds as best they could, and packed the wounds with damp gauze. The doctor came in my room and sat down. I knew as soon as I looked at her something was wrong. She told me what they had found and what her prognosis of the situation was. If she had to put it into percentages, she'd say there was a 90% chance that Justin was going to lose his left foot. I wasn't surprised at that news. The only thought I had was about the irony of the situation. To come this far, just to lose the very thing we were trying to improve. The cruelty of this was astounding. The strange thing is I had dreamt the night before that Justin had lost his foot. I remember vividly in this dream asking the doctors, "How do you explain to a four year old where his foot is?"

I didn't react immediately. I looked out the window and just went numb. A few tears did slip, but I refused to let any more fall. I knew if I were to start crying then, I would never stop.

The doctors surmised that the tissue breakdown and wound infections were because of Justin's poor eating habits. So,after consulting with a nutritionist and a few other specialists they decided that Justin would benefit from a feeding tube that would be surgically inserted in his abdomen. This tube would enable them to give Justin the added calories that were essential to his feet healing properly. At this point, I almost felt as if everything was out of control. I felt as if decisions were being made without me. We'd been in the hospital for three weeks. I felt as if I was going crazy. I had no privacy. I missed my husband and little girl. I wanted to go home.

One night a few days later, my husband asked me to come home for a little while. He assured me that Justin would be fine. I promised my little girl that I would be home soon, and my husband held me to that promise. I left to go home the morning they inserted the feeding tube. It was one of the hardest things I'd ever done. Justin was still drowsy from the anesthesia, and his tummy hurt tremendously, but my husband reminded me of the promise I had made.

I think it was so easy for him to say those things, because he wasn't there. He didn't see Justin. I think I was so caught up in being a mom to Justin, and he was so busy being a dad to Ashley, that there wasn't anything left of either of us to be anything else. It was a rough time. We lived three hundred miles from the Shriner's Hospital, so back and forth trips were few and far between. I only stayed away from Justin for four days, but at the end of those four days, all I could think of was seeing him again. He did wonderful. He was practically running the place when I got back.

I think we only stayed in the hospital for another four weeks. I had to learn sterile technique for the dressing changes on his feet. I did not want to do that at all! The first time I saw his feet I thought I was going to faint. The nurses were changing his dressing and I was peeking over their shoulders. I couldn't believe my eyes. The hole in his foot was as big as a golf ball, and half as deep. I took a step back and then I realized that was his right foot. The left was worse. How on earth could it be worse? When I saw his left foot I had to sit down. I can't explain how bad it was. Half of his foot had been eaten away by infection. Seeing how bad the damage was made me realize how long we were going to be in the hospital.

To keep the wounds clean they were doing "damp to dry" dressing changes. Which meant with sterile gloves on, they would pack the wounds with gauze soaked in sterile water, when the gauze dried it was pulled from the wound, taking any dead tissue up with it. It was so gross. I told them I never wanted to do that. But, I did want to go home, so I learned. I was already taking care of his trache, and his feeding tube. What was one more thing? It got to where I was doing all of his nursing care, so finally they let me go home! They took out his trache, just like that, and we left.

His feet healed miraculously. In about six weeks there were only scabs where holes had been before. Justin has a lot of scarring on his feet, but he does have feet!

I continued the extra feedings until his feet had completely healed, then after that all I had to do with his feeding tube, was flush it with some water and keep the outside edges clean. It was great for yucky medicine and things, but we really didn't need it anymore. When I asked the doctors when they would take it out, they said they wanted to leave it in until they were sure that Justin wouldn't need it. Well, when would that be?

The following November turned out to be the time they chose to do the spine surgery that Justin needed. After the time we had with the last surgery, everyone expected the worst. If he were to get tissue breakdown in the incision on his spine, like the ones on his feet, it would be awful.

I can't explain the calm I felt during this period of time. It wasn't any facade, I really was okay. I somehow knew that we were going to be all right this time.

Before they could do the spine surgery, Justin had to have another trache. That went great, it took no time at all. They had to wait a few days to do the next step, but we were ready.

Justin has never been afraid of surgery. Afterwards, he's been a little afraid of some of the things they've had to do, but not before. The strength and bravery in this little guy has always amazed me.

The spine procedure actually took less time than they expected. The major worry was how long Justin was going to stay on the ventilator. His lungs are small, and his diaphragm isn't as strong as it should be. There were other factors involved that attributed to their worry, but it wasn't necessary. Justin was off the ventilator within 24 hours, and off all breathing assisted machines within 72 hours. Weeks had been shortened to days; we all felt like having a party!

Three weeks later we were home, for good. No more surgeries, for a while anyway. We were as happy as we'd ever been.

* * *

Things went smoothly for a few months. We were beginning to feel as if it were the calm before the storm. After the last year we'd spent, I think we expected something tragic to happen around every corner.

In January, Justin got the flu. He couldn't stop vomiting, even when he went for hours with nothing in his stomach. He continued to get worse over night. By the time I got him to the doctor, he was severely dehydrated, and running a high fever. There was no question about it, he needed to be admitted right away. They started an I.V., and antibiotics to prevent a secondary infection, but the doctor suspected that pneumonia had already set in Justin's lungs, and later, a chest X-ray confirmed this. There was nothing more we could do, but wait.

Seeing how Justin looked the day he was put in the hospital, compared to how he looked the next morning was unbelievable! What a difference 24 hours of I.V. fluids can make. He was ready to go home. About four days later, we breathed a sigh of relief and took Justin home. The pneumonia hadn't cleared up, but there was no reason to keep him there, he was doing so much better.

The doctor we had at the time introduced us to a pediatrician named Beth Murnane. She would be following Justin's case while he was in the hospital. We fell in love right away. "Dr. Beth" was from that moment on our doctor, no question about it. She was so gentle and kind. An exceptional doctor, and we kept her busy for the next few months.

Every time Justin got a little cough I found myself at "Dr. Beth's" office. Most of the time she would put him on antibiotics, just as a safety precaution, and he would be fine in a few days.

We had to go to her office once, when she wasn't there. Oh, how I hated that! Any other doctor was going to treat Justin like a normal child, and while I longed for that sort of treatment during most situations, this wasn't one of them. He checked Justin's oxygen saturation level, and took an x-ray; prescribed an antibiotic and sent us home. I'm not sure what more I thought he should do, but I left feeling uneasy and vowed to come back when Dr. Beth returned.

That turned out to be two days later. Justin wasn't any better, in fact, he was a little worse. Dr. Beth took one look at the pulse oxymeter and called for an ambulance to transport us to the hospital. He had pneumonia, again, and needed to be put on oxygen.

It's dangerous for Justin to get pneumonia because of all the abnormalities surrounding his lungs; the curve of his spine, a rigid chest wall, his fragile diaphragm, and his inability to cough productively all add up to a delicate pulmonary situation. He just doesn't have the strength to cough up all the phlegm that collects in his lungs: making him susceptible to upper respiratory infections and pneumonia. Again, Justin responded well to treatment and after less than a week we'd probably be able to go home.

On Wednesday night Justin was doing so well I decided to get a good nights sleep at home. His oxygen levels were 97% or better and we were gradually weaning him off the oxygen, he was down to about 1/2 a liter, exactly where we thought he should be. I kissed him goodnight and told him I'd see him first thing in the morning. Whenever I'm away from him, I'm always eager to get back, but this time I was so relaxed. He was just across town, and he'd probably get to come home in a day or so. Everything seemed fine. But something was going on inside his little body, even now, I'm not sure the doctors ever figured it out.

When I got to the hospital the next morning, I expected Justin to be completely off the oxygen, I.V. out, ready to go, but instead his oxygen had been bumped up to 2 liters. I thought someone had made a mistake. We were going home in the next day or so. I asked Justin how he felt, "peachy fine" he told me. So I went to find his nurse. There was no mistake. Justin had started de-saturating through the night. By 3:00 that afternoon he was on 5 liters of oxygen, and his saturation levels wouldn't rise above 93%. The nurses didn't seem to think this was odd. But, at my request they put in a call to our doctor. After an hour I got tired of waiting and called Dr. Beth myself. She hadn't gotten any call and after what I told her about Justin, she said she'd be right there. She came in, took one look at him and said this was getting out of her field of expertise. She called a pulmonary specialist at the University of North Carolina, in Chapel Hill. An hour later we were in another ambulance on our way to a strange hospital, to meet a team of specialists.

As soon as we got settled in a room, doctors started pouring in in two's and three's. Although this wasn't uncommon to us, it's always unsettling in a new environment. Justin was exhausted, and he was a little scared. Usually he's pretty tolerant of the situations that arise whenever we're in the hospital, but that night he'd reached his quota. He started screaming for everyone to get out, in a tone that I'd never heard from him.

When things finally settled down, and the flow of traffic slowed, I was able to calm him down. Right after he dozed off another group of doctors came in and said they needed to get a blood sample. This wouldn't have upset me ordinarily, but they needed an arterial blood gas; the sample had to come from an artery deep within his wrist.

It's difficult enough to find a vein in Justin's arm for an I.V., and I was afraid an artery was going to be near impossible. The doctors called in the anesthesia people who are a little more skillful at finding these arteries that tend to hide as soon as they start. My job was to hold Justin as still as I possibly could while they dug around in his tiny arm; all the while tears rolling down my face. It took two doctors and three or four tries before they found that precious artery that carried the blood they needed for their test. At one point I held out my arm, and every one smiled. The doctor at Justin's arm said, "No kidding." I think any one of the doctors would have given their own blood right then if it would have helped. It was very traumatic.

The test results came back almost immediately; Justin's lungs weren't "exchanging" properly. Carbon dioxide wasn't being completely expelled from his lungs, and he wasn't getting enough oxygen. The frightening thing is, he was getting 5 liters of oxygen and his sats were hovering near 90%. He came so close to being placed in intensive care that night, which could've meant an emergency trache, but the same test taken the next morning revealed a more normal oxygen level in his blood, so that wasn't necessary. We had seen so many doctors that morning that by the time the anesthesiologist came in to draw the second blood gas, I said, "What do you want." When Justin saw the tray she carried he immediately started to cry, "No, mommy, no!" She was looking at his feet, because evidently there are accessible arteries there, but Justin is so sensitive about them, he tried to pull away. She said she could get the sample from his arm, but she thought it would be easier from his foot. I told her to go ahead, and Justin looked at me as if I had just sold his soul to the devil. "Not my boo-boo's, mommy, please." He cried. It was awful, but true to her word it was over in just a few seconds and Justin said, "That didn't hurt." He's such a trooper.

Day by day he continued to improve and I finally persuaded the doctors to let us go home. Justin still needed the oxygen, so we made the arrangements and went home. The results of the tests they had done while we were in the hospital came back, and the doctor called me with the news: Justin had restrictive lung disease. At the time that news didn't really tell me anything I didn't already know. Justin would have a hard time with a cough, and pneumonia could be fatal. Not a news flash. But the news of the effects it could have on him in the future was devastating.

As Justin grows, and his pulmonary function decreases, his heart will have to work harder to get oxygen through his system, which means his heart would be under a tremendous amount of strain. The arteries could become hardened, and he could suffer from pulmonary cardiac arrest: a heart attack. The doctors couldn't tell me at what age this would happen, just that these are some of the things we could expect. I felt as if my whole world was collapsing around me. We had come so far. We felt as if we had made some terrific progress, only to be set back by some new, and unfamiliar diagnosis.

We finally came to terms with this news and decided to live day to day. But every time Justin gets a cough, fear grips my heart.

It's been over a year since we had that scary episode in the hospital. The doctors never did figure out what was wrong, why Justin was so sick. They suspect the flu on top of pneumonia, but we'll never know for sure. He has made it through a few colds since then, and I've gotten to where I don't call the doctor every time he coughs. But I know that whenever he does come down with a cold I'll be on pins and needles until it passes.

We've moved to Indianapolis, Indiana and found a great team of doctors here. I was lucky enough to get with another great pediatrician, and she's been busy getting me connected with the right specialists. He's had his first meeting with his new pulmonoligist and she's determined through a lung function test that Justin functions at about 25%. Where most of us function up around 95%, he's down at 25%. That shocked me. To me that doesn't leave much leeway. As I said, we take it day to day.

Justin is such a happy kid. Even when he's sick, or recovering from surgery, his fighting spirit shines through. I can't imagine life without him. He's my heart and soul. Today he's doing great. He's getting ready to start first grade, in a normal classroom, with normal kids: just like him.

While we may not know what tomorrow holds for him, for today it's enough just to have Justin: a bright, sweet, little boy with his whole life ahead of him, whatever that might be.

***