Zac-a-Potatoes and the Miraculous Lung Surgery Reversal Story

Someone on the forums asked me about my comment in my siggy, referring to a lung surgery reversal. So, I've decided to post the story so others can share it with anyone who is interested.

March of 2009, all 4 of my children caught a really bad cold. This was back when the swine flu was still only in Mexico, and people weren't hyped up yet. :) After 2-3 weeks of orange juice and cold medicine, my skinniest child, Zacarayah (who was almost 3 and weighed in at 22 pounds, the same weight he had been at 9 months and who still wore 12 month pants, because the 2 year old pants assumed children had diapers on and fell off) started getting a really fast heartbeat, over 200 a minute, and started breathing really fast, over 60 a minute, which I knew wasn't good. Plus, the whole Tylenol/Motrin thing wasn't doing anything for his fever, which was starting to hit 106 with more frequency, and the medicine was only helping for about an hour or so at a time.

So, I brought him and my second sickest child in to the ER because one of my good doctor friends was working ER that night. He gave Zacarayah a shot of Rocephin (antibiotic) and sent them both home with antibiotics and cough medicine, and enough to cover all 4 of my children.

Well, the next day, Zacarayah didn't seem a whole lot better. In fact, if anything, he was worse. So, I brought him in again. They did X-rays and say something that looked like a pneumonia. Since his fever was 106 at the time, combined with the x-rays, and the fact that the antibiotic hadn't even helped him a little bit, plus the super-fast heart rate and respiratory rate, they decided to keep him in the hospital for a couple of days on IV antibiotics.

So, they started 2 different antibiotics around the clock. Plus Motrin and Tylenol at maximum doses schedule around the clock. Plus IV fluids.

After 3 days, there were no improvements. So, they switched antibiotics and tried again. 2 days later, there were still no improvements, and the fevers rarely went below 104, even with Tylenol and Motrin. He had pretty much quit eating, which, for a severely underweight sick child, is not really a good thing.

So, they decided to send him up to children's hospital. We went up there, and he underwent just about every test known to mankind. He arrived on Friday afternoon, and they didn't have anyone there over the weekend to put in a PICC line, (really? Come on now) until Monday afternoon. So, 3 times a day they had to try to take blood from an underweight, malnourished, super-skinny, not eating 106 fever 3 year old, which was not fun. They quickly ran out of hands veins after vein after vein blew, and then started in on his feet, and then his ankles and then his legs. I'm not sure where they would have gone next, had they not finally got his PICC line in. Poor child was so traumatized by needles, because each time they had to draw blood, it almost always took 4-5 pokes to get enough.

They changed his antibiotics around, and added some antifungals, and then switched those around, and then added more, and then added TPN (IV feedings, since he had pretty much quit eating all food), and then switched everything around again. Still getting Motrin and Tylenol around the clock, higher doses than recommended now, and still the fever rarely even dipped below 104 or 105, and was up in the 106.8 range right before it was time for the next dose.

He started out with two doctors, a pediatrician, and a pulmonologist. By Monday morning, he was up to about 7 doctors, 2 surgeons, and a whole entire boatload of interns. They paraded in throughout the day to ask questions, poke, prod, examine, discuss, and otherwise check on their little patient.

My Monday afternoon, they had tested him for everything they could think of, and then some. Swine flu, bird flu, pneumonia, RSV, Celiac disease, tuberculosis, asthma, various types of fungi and bacteria and viruses, and kidney problems and lung disease, and cancer, and heart problems, and allergies, and the list went on and on and on. Some things made sense, others just had me wondering if they were just grabbing at straws.

So, as time went on, he was getting worse and worse. They were pretty sure that it was a pleural effusion of some sort, and the surgeons, who were increasing almost daily in number, were undecided as to what to do. We even had some surgeons from other hospitals come consult. About half wanted to do surgery, open up his lung, and remove the source of infection. The other half wanted to keep waiting, giving the antibiotics a chance to work, and encapsulate the infection, before doing surgery, or hope that the antibiotics alone would work.

The biggest risk was that they felt that a wet-type lung infection they suspected they were dealing with had a VERY high potential for systemic damage if they operated. The biggest risk of all, was that the infected area would just sort of disintegrate when they tried to remove it, so instead of having the infection remain in the portion of his lung where it was, it would literally send tiny pieces all over the place, spreading the infection even faster.

So, finally, they all agreed that the antibiotics weren't doing much. They were all pretty much agreed to doing the surgery.

Just before the surgery, one of the pulmonologists rechecked the Xrays and stated that perhaps he knew what the problem was, but he was unable to say for certain without doing the surgery.

So, we went ahead with the surgery. They were going to go in and remove as little of the actual lung itself as they could, although the infection looked to be taking up to over half his lung, and might wind up having to remove the whole lung, and hope that the infection wouldn't spread further.

He went in for the surgery.


The head surgeon told us it would take hopefully about 8-12 hours to do the surgery, perhaps longer, depending on what happened. I think he was out in under 4 hours. They had removed a large portion of the lung, and had 2 chest tubes draining the rest of the infection if there was any.

They moved him up to ICU, where they told us he would be for about a week, if everything went right. Perhaps longer, there was no way to tell. Just slightly over 24 hours later, they were moving him back to the floor. It would have been under 24 hours, but they weren't prepared for him to do so well, so they didn't have a room open, and had to wait for one.




They said the chest tubes would need to be in for 1-2 weeks, at least, to make sure all the drainage was out. One was left in for 2 days after we got out of ICU, the second was taken out the next day.

They told me to expect fevers still for several days after the surgery. He came out of the surgery without a fever, and didn't get another fever again for over 8 months.

They said that he would be in the hospital for about a month after surgery, perhaps more. He was out in about a week. Mostly because they kept wanting to keep him just a little longer to make sure he was doing well.

They said he would need to keep the PICC line in for about 6 months to a year after the surgery, and be on antibiotics for that long through his line, to make sure the infection was all gone. Two weeks after we were home, the doctors said it could come out, they had done all the precautionary antibiotics he would need for now, just to watch him.

They said that it would take him from 1-2 years to regain a lot of his strength, and that he would always get winded a little easier and be a little shorter of breath, but he should be fine as he got older. Just never expect him to be able to run a marathon or do heavy sports. It took him maybe a month to get back to fairly normal, and he can outrun any of my other children, and most of the children at church as well, even though many are bigger than he is.

The only thing they were wrong about in a not-so-positive aspect, was that they told me that he would start gaining weight after he started healing. He's 4.5 years old now, and he weighs, well, 28 pounds. Almost. And, that's with the 3 pediasures a day, high calorie meals, and high calorie snacks. But, I think that's just him.

So, all that still doesn't ex pain the "lung surgery reversal." Yeah, he recovered, but where the the reversal part come in?

Well, remember that pulmonologist I mentioned? The one that said that he might know what the problem was, but wouldn't be able to tell until after the surgery? Well, it turns out that his official diagnosis was called by the lovely short name of "Congenital Cystic Adenomatoid Malformation." In layman's terms, that meant that part of his lung didn't develop properly. He was born with the problem. A small portion of the lung just sort of developed into a little ball.

If it is noticed before it causes problems, it is always recommended that it is removed. The reason for this is that this area has a high risk of causing problems. Infections, abnormal growth, causing lung difficulties, and cancer. We got the infection one. Because the infection was localized to the area of the lung where the malformation was, it looked like a pneumonia or abscess or effusion. Because it was infected it was hard to tell what it was.

Now, this area of the lung can be a large portion of the lung, a very small portion of the lung that swells with infection, or a portion attached to the lung.

Upon removal of this infected portion, his lung reinflated to its correct position, and all signs of infection disappeared from his body. Except for a couple scars on his lung, and a couple scars on his body, you would never even guess by looking at an X-ray that the surgeon fully believed he had removed over half of his lung. His current x-rays barely show any change at all from normal, apart from the scar tissue. Basically, after all that, all they did was go in and remove an extra little sac that got really, really, really, really big, and then the rest of his lung went back to doing what it was supposed to do as if nothing ever happened.

So, once again, this special little angel became my "miracle boy." He's always been my "miracle boy." I probably never should have gotten pregnant with him, the pregnancy probably could have been lost 100 different ways, and he had so many complications at birth, it's hard to believe he lived and is 100% normal. In fact, according to his pulmonologist, who loves to make jokes, he's *more* normal now than he was when he was born. :D

Further information: Congenital Cystic Adenomatoid Malformation is very rare disease. Zacarayah's pulmonologist, who specialized in these types of disease, told us that they are so rare, that in all his 30+ years being a specialist, he has seen an "increase" in the number of cases lately. In the last 10 years, he has had exactly 3 cases. In the 20 years before that, he also had 3 cases. And Zaca's was the worst he had seen out of all of them. This is a doctor who spends his life working with children who have lung diseases which baffle the other specialists.

So, we are here, and still celebrating in this miracle.

These pictures are from the day after he came home from the hospital. PICC line is still in and band-aids are still on.