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Rough Patch, Part Four

Rough Patch, Part Four

Start here to read from the beginning.

We settled in to KKI but the vomiting didn’t stop. Our son stopped being able to keep anything down at all, even water. The nurses were insistent that he was keeping some down, but they weren’t with him all day. I was adamant they needed to do something but wasn’t sure what exactly that something would be. After the weekend the senior doctor returned and checked on us early in her rounds. She told us he looked OK but she was going to draw labs just in case. Once she received the results that would inform whatever our next steps would be. I settled down with my son for a nap and did my best to keep him comfortable while they worked out a plan.

Within an hour a skittish looking nurse came and woke me up. When I say skittish, her face was completely calm. Her eyes looked terrified. She told me we were being transported. “OK… can I take care of this when my son wakes up?”
“No,” she said. “They’ll be here any minute.”
“Oh… OK,” and I started packing things as quickly as I could. The nurse reassured me that they’d figure something out as far as the items we had to leave behind. I barely got everything shoved into a bag before our son was being woken and loaded up onto the stretcher for transport. Apparently his labs had shown a significant amount of dehydration, even though he didn’t appear dehydrated when examined.

They settled us back into a hospital room after transport and ran more tests. He had bruised during the upper endoscopy and his system was blocked. He needed to be on gut rest which meant IV nutrition. We spent another week in the hospital with a PICC line and TPN, his g-tube set up to drain. It was a huge blessing that the bruising healed quickly, it only took the planned week and not any longer, and we were able to once again plan for beginning our son’s feeding therapy. At this point there had to be a serious discussion about whether or not we could even still do feeding therapy for our son. The planned start of therapy had been delayed by over a month at this point. I wasn’t getting any less pregnant and I was concerned the stress of being in the hospital with my son this long was going to cause health issues for the baby and me.

We discussed the issues with the point of contact for KKI at the hospital. I explained to them if they could get me near enough to a bathroom I could make it without risking an accident then I should be able to manage (the first rooming arrangement we had was a long walk from the bathroom). The nurses would be able to help with my son who did need carried a lot and rehabilitated from his two weeks in the ICU. Knowing the situation, the therapists could come and get my son from the room. This would significantly reduce the amount of lifting and pushing I needed to do. My husband would plan to come up on weekends and stay, leaving me to rest on the weekends in my own bed at home. We agreed to take him back to feeding therapy and continue with his rehabilitation in patient at KKI.

Finally, after everything that happened in the hospital, we were able to settle in at KKI and make some real progress. It was intense but manageable. I had other parents to talk to and most of them were supportive. All-in-all it would’ve been preferable to have done the feeding therapy outpatient, it just wasn’t practical for us. There were additional things we needed to have I’m not mentioning here. Getting them done would’ve been impossible with the intensive feeding program’s all day every weekday schedule. Being inpatient allowed them to be done in the morning, evening, or even sometimes overnight when they wouldn’t interfere with our son’s ability to sleep. We didn’t take advantage of them because of our situation, but there are many resources to help families who are coming in from out of town including the Ronald McDonald House. KKI has a list of resources they can share with you if you’re considering treatment with them.

So, that’s where I’ve been and why I haven’t been writing. After we finished our treatment at KKI the baby was due within a month. It took everything I had to keep up with our son and not overwork myself. I’m just now getting back on my feet. Our son is doing well. I’ll keep working on writing about all the major things that happened while I was away. I look forward to sharing more with you. I’m so excited to be back!

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Feeding Problems and Speech Delay

Feeding Problems and Speech Delay

Our son has been trying to talk for a while now, and he tends to be reasonably understandable when he wants something. Every once in a while, he’ll even surprise you with a full comprehensible sentence — maybe once a month. It’s clear he understands complex thoughts and long sentences based on his response to instructions. So, what gives? Why is he not speaking clearly on a consistent basis?

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You’re Not Alone

It’s been a rough week. There was so much violence and death reported on the news it’s difficult to even register the full gravity of it all. On top of that, loving parents on vacation with their son learned the hard way that, in Florida, deadly efficient predators lurk in water so shallow even adult fish would prefer not to swim there. Did I know that before this week? Yes, I did. Would I expect anyone else to know who doesn’t live in the areas these predators thrive? Absolutely not.

Next week we meet with therapists and a teacher from our state’s early intervention program to discuss our son’s progress and our goals for the next year. He was tested last week by neurology and the teacher. It was devastatingly obvious he’s behind. How far behind is difficult to discern. Neurology told us he’s performing between 18 and 24 months in general. The teacher gave no hints about what she thinks. We’ll find that out next week.

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Your Child Looks too Healthy to Have a Tube

First, thank you. Unfortunately, it’s not that simple. If only getting to a low side of normal weight automatically made my son want to eat and drink enough to sustain himself. That would make everything so much easier. There’s something I need to share with you while we’re on the topic.

My child is healthy because of the tube. If not for the tube, he would still be off the bottom end of the growth chart. For the first year of his life he gagged on anything put into his mouth besides formula (and sometimes that too), so he wouldn’t have been able to take any medication. We suspect its because of his medication he eats what he does. He has all the behavior symptoms of GERD (gastroesophageal reflux disease) when left untreated.

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Eating Problems Requiring a G or JTube are More than Picky Eating

Sometimes people say insensitive things. It’s generally not intentional, and I prefer to assume everyone has good intentions at heart. In the spirit of those good intentions, I would like to differentiate between what constitutes needing a g or jtube versus being a, “picky eater.”

Picky eaters are a struggle. Their parents spend a lot of time encouraging and coaxing them to eat, and they frequently refuse to try new things. At the end of the day though, the child does eat. Their food stays in their stomach. They receive enough calories and nutrition to grow. While frustrating, they can generally be expected to at least pick at their food if their belly is empty, provided you can find something that appeals to them. Since they do eat, there are usually a few fallback foods they’ll consume. There’s no expectation that they would truly starve to death if you didn’t produce the perfect series of meals (though it may feel like it sometimes).

The difference between that and needing a g or jtube is that tube-fed children really would either starve to death or be so nutrition deprived they wouldn’t be able to grow if not for tube feedings. At the table they have the appearance of a picky eater, from start to finish. They refuse to eat foods provided. Additional foods are also rejected. When pressed, they may take a bite or two. The experience displays everything you would expect from a particularly challenging meal time with a picky eater. For tube fed children, it’s like this every meal. There is no food you can offer that they’ll gobble up (or if there is, it’s nutritional value is extremely limited and it isn’t viable to be a primary source of nutrition).

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ICD-9-CM Transition to ICD-10-CM and Why it’s Awesome

ICD-9-CM Transition to ICD-10-CM and Why it’s Awesome

In ICD-9-CM, if your child has feeding difficulties or is labeled as failure to thrive (FTT) the code used for the purposes of insurance billing is, “…ICD-9-CM 783.3 Feeding difficulties and mismanagement.”(1) This seems at first glance to make sense, but if your child has a medical condition that is keeping them from gaining weight, it’s extremely hurtful to see the terms, “feeding,” and “mismanagement,” grouped together in their records. It doesn’t go unnoticed, and several mothers I’ve talked to have been emotionally upset by the code. It’s difficult to explain to them it’s just for insurance billing purposes when it’s part of their child’s official medical documentation.

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