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Sunday, December 19, 2010

The Ohio Report

First off, I really do need to express my gratitude to everyone who has sent me words of encouragement, love and support and has said prayers on our behalf. I have had many experiences lately where I know that things have turned out a certain way because so many people are praying for us. (like how we didn't miss our connecting flight from Memphis to Columbus even though our plane took off from Phoenix an hour late :) We are also very VERY grateful for our friends and family who have taken care of the other kids for us. One of the hardest things about this past year is all of the time I have had to spend away from the other kids while Raya has been at the hospital, but the one thing that has helped me to deal with the mommy guilt of leaving them is knowing that they were being as loved and cared for as they possibly could be and that they were in places where they felt safe and comfortable. Instead of being upset with me for leaving, they've been excited to have sleepovers on school nights. :) 

Dr. D, Mary (the NP) and Raya

We'll start with Dr. D's report and then I'll tell you how I feel about it.
Here's what he had to say:
1. The manometry test wasn't totally normal but was pretty good. (meaning that her stomach & small intestine are functioning pretty normally.)
2. The gastric emptying study was 97% cleared, which means that 2 hours after the radioactive formula was put into her stomach, 97% of it had left her stomach. That's totally normal.
3. The impedance test showed reflux but not a huge amount and the symptoms were pretty consistent with what was written on the log, meaning that what we see is pretty much what we get with her reflux. When she coughs, has those loud wet hiccups, and spits up, it's reflux.

What do these results mean?
Well, it means that she does not have a motility disorder, so once again, we have ruled something out. I'm pretty tired of ruling things out and not that I was wishing a motility disorder on my child but after a year of watching her suffer through really miserable symptoms all day & night every day, I was really REALLY hoping to pinpoint something rather than rule out one more thing. That being said, here's Dr. D's impressions of what she DOES have going on.

1. Reflux, which we have known from day 1, but for most kids with reflux, it resolves itself by the time they're 12-18 months because the lower esophageal sphincter has matured enough to do its job of keeping stomach contents in the stomach by then. He also said that kids who have increased muscle tone, which comes with cerebral palsy, have a more difficult time resolving reflux.

2. Sensory disorder. To quote what they put on our discharge paperwork, "Raya seems to have a very sensitive reaction to visceral sensations." Briefly put, Raya's stomach & intestines do not interpret sensory input correctly which causes her GI tract to overreact to stimuli that wouldn't normally cause dry heaving & vomiting.

Sensory processing disorder is a topic that we first learned about from Raya's neurologist when she diagnosed her with cerebral palsy and sensory processing disorder. Since then, I have wondered at times if the increased tone from CP and her sensory issues may have been playing a part in her vomiting since I can definitely see that they play a role in her torticollis being so difficult to resolve. It didn't seem to me like those things alone could cause the severity of symptoms that she's had though so I didn't really consider it as a possible cause. But what the heck do I know anyway, right? :)
I mentioned before that while we were at NCH, we were able to replace our awful G tube drainage bottle contraption with a drainage bag that's specifically made for that purpose. I told Mary, the nurse practitioner that works with Dr. D, that I thought the bags did a much better job of venting gas in addition to the fluid drainage and that I thought maybe that was contributing to the sudden improvement of her vomiting. Sure enough, Dr. D said that the intestines & stomach can be very sensitive to pressures and that it's possible that the improved venting w/the bags has helped with the vomiting because if her gut doesn't interpret sensory input correctly, that could cause it to overreact. So in other words, her body reacts disproportionately to little things like a little extra gas in her stomach or intestines, the feeling of a full stomach, and long periods of motion like car rides. For other kids, those things might not even be noticed and their bodies would perceive them as normal sensations and react accordingly. For Raya, her body overreacts and she gags, dry heaves, and/or throws up. I had thought that sensory processing disorder mainly affected things like a child's sense of touch, smell and hearing, but I had no idea that it could affect the GI tract as much as it has affected Raya's.

Where do we go from here?
His recommendations are:
1. Keep her on the neurological medication that she's currently on. Because there seems to be a neurological component to her symptoms and because that particular medication seems to have helped with her reflux, he feels that this particular medication is a good one for her.
2. Add a new medication that he said will help to desensitize her gut and hopefully reduce the discomfort and irritation that seem to be causing her to vomit. It is also used to increase appetite, which may be beneficial in trying to get her to eat.
3. Because the tests confirmed that her stomach has the capability to function normally, he would like us to transition her back to gastric feeds instead of jejunal feeds. We will need to experiment with a combination of the 2 feeds and continue with periodic gastric venting in order to make the transition. (That part was difficult for me to hear because I feel like we have spent the entire first year of her life trying every possible combination of feeds to no avail, which got us where we are today: a 13 month old who won't eat.) That being said, I do agree that if she has a fully-functioning stomach, there's no reason why we shouldn't try to use it.
4. If her reflux doesn't resolve itself by the time she's about 18 months old and we haven't been able to successfully transition her to gastric feeds without vomiting, then we will need to revisit the possibility of doing a fundoplication surgery, which is something we had talked about before. This surgery is done to prevent reflux and vomiting, which is accomplished by taking the fundus (top of the stomach) and wrapping it around the lower end of the esophagus, which tightens the lower esophageal sphincter (LES) and prevents the backflow of stomach contents into the esophagus. (I sound like a medical dictionary, don't I.) From where we are right now, I see this as a realistic expectation if we are going to be putting her back on gastric feeds.

How do I feel about all of this?
The 3 words that first come to mind are frustrated, disappointed, and discouraged but the next 3 are grateful, humbled, and faithful.
Frustrated: I am frustrated that after a whole year of ruling out one thing after another after another, it felt like the main result of our trip was that we ruled out one more thing. I'm frustrated that the recommended course of action is pretty much just to keep trying. I'm frustrated that when Raya's body really needed to give them an accurate picture of how it usually functions, it didn't.
Disappointed: I'm disappointed that we didn't get a label for Raya's problem because that means that we also didn't get a cut & dried plan of action for how to fix it. I'm disappointed that the testing all came back normal/close to normal when I KNOW that her body doesn't usually work that way. I'm disappointed that our trip to Ohio didn't remove as much of the uncertainty as I had hoped it would, and really just replaced the old uncertainty with more new and very daunting uncertainty.
Discouraged: I'm discouraged by the fact that I feel like we have already done everything we know to do and none of it has worked so far. I'm discouraged because there was no diagnosis with an immediate course of action that would have stopped the vomiting so that we could shift our focus to teaching her to eat. I'm discouraged by the fact that I feel like this non-diagnosis pretty much leaves the burden of "fixing" her up to me and Donny and how hard we are willing & able to work at it. So far, we haven't made a lot of progress with her towards eating, and that makes it difficult to see how we'll be successful at that huge job.

Grateful: In spite of the results not being exactly what I had expected or wanted, I am extremely grateful that we had the opportunity to go meet Dr. D and his team and have Raya evaluated by them. I'm grateful that they did rule out something that could have been a lifelong problem for her and grateful for the suggestions that were made. I'm also grateful for the personal growth that I have experienced through the challenges I have been faced with over the past year, and for Donny's patience, love and support as I have learned to handle what I'm being dealt as Raya's mom.
Humbled:  I feel humbled by what a huge mountain we will need to climb to get Raya from being 100% GJ tube dependent to being an oral eater. We're talking Kilimanjaro+Everest=Raya. However, because I know that God chose to give me Raya and everything that comes along with her, I feel humbled that He thinks I can handle this. At the moment, I have a hard time feeling that way about myself but I know that if God has faith in me to do this, with His help, I will be able to. People tell me how strong I am, etc. but when you are the one that's holding the big fat barbell full of weights, it's hard to see how big your muscles look and I don't know if I feel that strong.
Faithful: In the blessing that Donny gave Raya when she was almost 2 months old and before all of this really got started, he blessed her that she would "have a healthy body and enjoy the activities of life." I distinctly remember that statement standing out to me at the time, and as her various challenges have presented themselves over the past year, that has replayed itself over and over in my mind. I have no doubt that it is true. I have faith that whatever really is at the root of her difficulties will be no match for her strong will & determination to do whatever it is that she wants to do.

We have a follow-up visit with her regular GI doctor in a couple weeks and hopefully at that point she will start Raya on the new medication and we can start coming up with an action plan for transitioning back to gastric feeds. I'm also hoping to get a little bit more detailed information about the test results since we really only had about 15 minutes to discuss 30+ hours' worth of testing before we left Ohio. Well, onward and upward, it's time to start climbing that mountain. :)

3 comments:

  1. Brandis, I am greatful you posted this on facebook and shared. You are an incredibly strong woman. I admire your strength as a mom. I can understand some of the frustration of no diagnosis and struggle with doctors with my own son. But what you are going through seems so much harder. Thank you for sharing your testimony in your blog to remind me that the struggles sometimes are worth it. Thank you again. Cori Condie Burnett

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  2. I love you, you are great. That's about all I've really got. I understand the frustration of ruling things out but still no answers, but not to the degree that you do, so I'm not even going to try that 'I feel your pain.' I don't. Our pains are completely different. The only thing we've got in common (on this sick but not sick kid issue) is that we have both had to struggle, and will continue to do so for a while. But again, my struggle is only seven months old, to your 13 months, and mine no where near the level of struggle (or doctor's visits) of yours. But again, if you ever need to vent, I'm not as familiar with your section of the medical dictionary, but I'm here, as one momma of a kid with issues to another.
    Now, if you can just break her little stubborness and get her to eat! I've got bacon salt if you want, I can send it down and you can flavor everything in bacon..... :)

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  3. hi! my name is becca, my daughter is having her first motility tests on wednesday. do you have any "how to read" tips that the nurse gave you. ( the computer that shows the contractions i the stomach? also was rays gastric emptying study solids or liquids? kenzies gastric emptying study showed only 27% emptied liquids in 1 hr and nothing digested solid in 4 hrs... your website has helped so much! thank you!

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