A mama’s instinct is usually right… 28 Days of Cayden, Day 6

Cayden had a tummy ache. Always. All the time. He fussed and complained whenever he was digesting it seemed. If he ate too much too fast, he would inevitably vomit a good portion of it up. The doctors, were concerned about his slow, almost nonexistent weight gain. But more irritating were the nutritionists at the WIC office who were always on me about his diet… pump up the calories, feed him more pedicure, add butter, cream, protein powder to his foods. I did everything they told me. He ate a TON of calorie dense foods. But then he would throw up half of it.

Of course, they didn’t seem to hear me, but I kept saying it. There is something wrong. There is an issue. This should not be such a regular occurrence. My 1 year old should not be so used to hearing her big brother gag & cough & wretch, so that she instinctively knew to run for the towels and bowl that was always handy at feeding time.

They wanted to blame it on GERD or slow motility, or aspiration, but I knew it was more than that. It was constant constipation, so much that he could not go with out suppositories and laxatives. Too many days in a row on those & it was diaper blowouts. Everywhere. I was changing a full outfit in the back of the van in parking lots of doctors offices. ALL. THE. TIME. And washing his carseat cover more times than I could count.

We finally got his pediatrician to order a full set of Upper & Lower GI X-rays. These were supposed to see what was potentially going on in the belly of my boy. After a painful hour of forcing barium down Cayden’s throat (not fun, considering the gagging and spitting and him not fully understanding WHY he had to drink this nasty stuff when mommy usually makes such tasty home-made food for him. We finally made it thru the x-rays. It was a full afternoon, if I recall correctly. Then we ended up having to do a barium enema too, because he wouldn’t swallow enough barium, added to his slow motility, made the pictures not really turn out the best.

So they were e-mailed to our pediatric gastro-interologist. And what did he say at our visit later that week? Nothing is wrong. It’s just constipation. Put more fiber in his diet. You really should consider a g-tube, that would make your life a lot easier. In his in-and-out, I-need-to-get-to-my-golf-game, sort of bedside manner. This guy never even acknowledged Cayden, his patient, sitting in his wheelchair in the middle of the exam room, just side-talked to me and then quickly felt C’s belly without asking (a BIG Cayden no-no).

I wondered then & now if he really even bothered to look at the X-rays. He always had been a specialist that did not hit me right. He was always in and out. Always, “You should g-tube.” With the overwhelming attitude of… “what does it matter, he’s a cripple.” Really, that is how this guy made me feel. And he was supposedly the best (if not the only) pediatric GI in town.

I let it ride for a while. We were in the middle of moving, and I had a lot on my plate. We kept doing the Miralax, kept cleaning up massive blowouts for my 3 year old. Kept the vomit bowl handy at every meal. I learned to feed him smaller meals, more frequently, like we did when he was an infant. This helped some. I did more fiber, applesauce in every meal, benefiber in most. No more bananas or other constipating foods. Pediasure was rotting his teeth, but it was what we HAD to have for the nutrients and meal-substituting caloric count. The nutritionist was on me, hassling me about weight gain, as no pounds had been gained in the last year. 18 pounds and holding.

We tried so many things, but nothing really changed. We kept massaging Cayden’s belly, working his legs, trying to get his time in the stander and walker to ‘activate the bowels.’ He was miserable. We would have to roll him over at night several times, and I believe we were actually helping his food move through his bowels, by rotating his body. He was cranky. It wasn’t like he was always cranky, but you could see the underlying discomfort & frustration he had by being constantly constipated, or worse, not being able to control the output!

Finally, I think it was maybe 6 months from the GI study, we were back in the GI office for a check-up. Again. “Still no g-tube? Still holding on to feeding him? It really would be easier to just tube him.” I was so tired of his talk. He knew my firm stance on feeding him as long as it was safe. I left, again no answers to our complaints, no solutions, just “See you in 6 months.” This guy really didn’t even seem to care that we were tired of the pain and run-around. I vowed on the way home that I would not step foot in his office again, no matter what I had to do or where I had to drive.

I was so angry that day, I got a speeding ticket on the way home from that appointment. 3 miles from my house. In a known speed trap. But I was FUMING! Talking to myself the whole way home. I know I am not crazy. My kid is not crazy. There IS something wrong!

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Cayden the morning of his surgery. Did he understand what we were doing? YES! And he was excited to know that his tummy pains were going to be fixed.

So, I went to the pediatrician and said, I must have a new GI. Who is the best around? Who else can we see? I didn’t care where it was. I would drive hours, I was used to that. Just find me someone who can figure out what is wrong!  So we got a new GI, based out of Wake Forest/Baptist, who actually said “Let’s think outside the box here & see what MIGHT be causing the problem.” We chatted for a while. He was friendly to Cayden. He looked at the x-ray films while we were in the room with him (that I had picked up and brought with me to speed along the process). He pointed out an area & almost immediately said “This is a classic genetic malrotation of the intestines. It is blocking his bowels. This is life-threatening and needs to be fixed yesterday. Go schedule the procedure for Thursday or Friday. This can kill his bowels. This can cause real damage & possibly kill him.”

We were floored. These were the same scans we had done over 6 months ago, that the other GI doctor had seen and found no issues with. It was astounding. The new GI, even went, and got another doctor to look at the scans & they agreed. It was definitely a malrotation, and happened early in the womb, (the intestines were not laid into the body quite correctly (another mid-line issue). Cayden needed immediate and severe surgery to correct this.

So, being the slightly thoughtful parents that we are, we said… let’s do it Monday, we have Skylar’s 2nd birthday party on Saturday, & we’d rather not cancel and have to post pone it.” He looked at us sort of cross-eyed. “Well,” we said, “Cayden has been living with this for so long, a couple more days won’t hurt, right? And we don’t want Skylar to have to spend her birthday in the hospital.”

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Cayden recovering. His tummy is not very bloated, but you can see he is still not feeling very good. I think he was a little mad that his pain was not over yet.

That is how Cayden had his most complex surgery. Well, maybe it ranks up there with some of his others… but it was the longest stay ever in the hospital, 10 days,  he was bloated and miserable for many of them, because his bowels just wouldn’t kick back into working after having been taken out, handled, and re-placed in his tummy. He also had his appendix removed, as a preventative measure. This is called a Ladd Procedure with Appendectomy.

After the surgery and recovery, we saw an immediate and noticeable difference in his ability and desire to eat. He could eat more, threw up very seldom, started to immediately gain weight & really wanted to eat more new foods. I believe that he realized that he could eat more now & that it felt better to eat, so he was going to! We were working hard on getting his chewing and swallowing to a manageable place, and now that it didn’t hurt to eat, he was going to try!

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Cayden eating oreos (and looks like squash) for dinner. Happy Boy!

I never regretted getting that second opinion. I do regret not doing it sooner. That ‘drive-thru doctor’ we had seen, could have caused Cayden the loss of his bowels, or even his life, and I never did feel like he was truly compassionate, or that he listened to any of my concerns.

This time period really taught me how to properly advocate for Cayden. How to be his voice and to make it heard, no matter how hard or how long it took. It can be intimidating, to call a doctor out on a bad diagnosis, but it was not him changing the diaper blowouts, getting up to clean up vomit several times a day, or to reposition a gassy and uncomfortable child in the middle of the night.

I see now that I was similar to the Biblical persistent widow in some ways.

Luke 18:1-8

Jesus told them a story showing that it was necessary for them to pray consistently and never quit. He said, “There was once a judge in some city who never gave God a thought and cared nothing for people. A widow in that city kept after him: ‘My rights are being violated. Protect me!’

“He never gave her the time of day. But after this went on and on he said to himself, ‘I care nothing what God thinks, even less what people think. But because this widow won’t quit badgering me, I’d better do something and see that she gets justice—otherwise I’m going to end up beaten black-and-blue by her pounding.’”

Then the Master said, “Do you hear what that judge, corrupt as he is, is saying? So what makes you think God won’t step in and work justice for his chosen people, who continue to cry out for help? Won’t he stick up for them? I assure you, he will. He will not drag his feet. But how much of that kind of persistent faith will the Son of Man find on the earth when he returns?”

Moms & Dads of complex kids, and of regular kids too… don’t give up if you think there is something going on with your child. Try to find out what it is. If the child can’t or won’t speak about it, you NEED to determine what is going on, however you can. Be persistent. Research, ask, don’t stop asking, and pray. As it says in Luke,

God will step in and work justice for his chosen people, who continue to cry out for help. 

He certainly worked justice for Cayden, his tummy aches were gone, his weight went up, and his smiles came back! Victory!

Thanks for sticking with me on the long post!

Shira

If you’re interested, click the blue links for a medical resource on the genetic causes for malrotation. Way down in the bottom, it says that a missing long arm of CH 13 can cause this issue… just what Cayden had!

 

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