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I'm done.

Today, I'm done. I'm done with going to another doctor appointment and trying to carry on a conversation with the doctor and keep Raya from jumping off of things and emptying the soap dispenser at the same time. I'm done with having the same discussion that we've had time and time again for the last year (well, the last 3 years and 11 months, actually). I'm tired of doing the same things over and over and hoping something will change but I'm also tired of doing dozens of different things hoping that one of them will make a difference when they never really do. I'm done trying to find answers to questions that just flat out don't have answers. I'm done with speculating whether changing her diet, her feed schedule or her medications will change anything. I'm done with talking about going out of state again for testing that may or may not end up being productive or beating our heads against the wall trying to get insurance to approve a minimally invasive procedure that actually COULD make a difference. I'm done with wondering what has caused this week's mysterious rash or strange symptom or behavior and if it was food related or not. I'm tired of the vicious cycle of imposing extreme dietary restrictions, seeing things go well, thinking we're being too extreme on the dietary restrictions, relaxing on the dietary restrictions, and then being rudely reminded by unpleasant symptoms WHY we're sticking with the dietary restrictions. I'm also tired of trying to explain the dietary restrictions to other people who either judge us as being overly cautious and paranoid or assume that we must subscribe to the same extreme views that they do about what ALL people should be avoiding in their diets. I'm tired of trying to determine if things are better or worse or if changes are because of this or that or the other thing, or if a behavior is an indicator of something that's wrong with her, or if it's just her being her or her being a 4 year old. I'm just done.

You know what else I'm done with? I'm done with people who are convinced that their personal philosophy on food and diet are the absolute truth and everyone who believes or does differently than them is wrong, and is ultimately harming their family by allowing them to eat or drink certain things. I'm done with people who don't understand that for some people, food is more harmful than the so-called "chemical formulas" that can and do sustain life and help people who would otherwise starve to death or suffer constant misery because of food to instead THRIVE and live healthy lives. I'm just tired of not having the answers I need, and I'm tired of the people who think that they DO have the answers to things they know relatively little about.

*deep breaths* Rant over. For now.
 
 But yeah, I'm just done. I'm ready for a vacation from all things medical. Finding out on Friday that our wonderful, amazing neurologist had resigned and knowing we'd have to start over with someone new was kind of a big blow. We only see her a couple times a year so I can only imagine how other people feel who need to see neuro on a more frequent basis. Today just started off on the wrong foot altogether with Kaida waking up sick again AND Cole saying he had a sore throat & needed to stay home. I try really hard to be courteous and keep germs at home, and I really didn't want to send him to school and then get a phone call half an hour later that I needed to pick him up so I kept them both home. Selfish as it may be, I was really frustrated because having 2 kids at home meant that I did not get to any of the things I needed to do while Raya was at school this morning. I had planned on doing some Christmas shopping, getting packages ready to mail, and mailing them and none of that happened. (then I felt like a jerk for being annoyed that the kids were sick & messed up my plans for the day) After I picked Raya up from school, her respite provider came and for whatever reason, they were so loud and rowdy the whole time she was here that I couldn't hear myself think and didn't get much of anything accomplished all afternoon either. I was relieved when it was time to get out of the house, even if it was just to go to another appointment.

I was not looking forward to this GI appointment because I knew Raya's weight gain was not going to be good and was actually afraid she might have lost weight. We've had problems in the past couple of weeks with her feeding pump not working correctly at night and getting clogged but not alarming so that we'd know to fix it. Because of that, there have been several nights where she hasn't gotten as much as 1/3 of her calories for the 24 hour period and it's really difficult (or just plain impossible) to make up for that. Then there was the week that she was either sick or just having terrible motility and wasn't getting all her calories. So yeah, I anticipated bad news on the scale and it wasn't as bad as I was afraid it might be but it wasn't good either. She went from 15.0kg to 15.1kg, so she gained about 3 ounces in the last 2 months. Who knows how much she actually lost & gained, but at least she netted a 3 ounce gain. Measuring her height at the appointment turned into quite the circus act. The tech was new, bless her heart, and did a really good job of getting Raya to stand up really tall. About 2 cm too tall. :) As per usual, she also wanted to redo Raya's BP after it came up at 84/55. I was all excited that her systolic was above 80 and the machine didn't beep but she thought something had gone wrong and was going to redo it until I told her that 84/55 was higher than usual.

Now that Raya is a big girl, she always wears the "big girl dresses" at the doctor's office. She wasn't too happy about having a blue dress until she saw that there were boy AND girl astronauts on it. That made it okay.
And yes, I am the mom that let the kid lay on the floor and color. In honesty, that floor is probably cleaner than our floor at home. You pick your battles.

I had showed Raya a picture of her friend Alexandra who happened to be at a different doctor's office at the same time. Alexandra was wearing a "tiger dress" so we sent her mom a picture of Raya in her blue astronaut dress. Alexandra replied that blue was a good color on Raya. These kiddos are so funny! It's kind of sad that they think nothing of complimenting each other's hospital gowns but it's adorable at the same time.

Now that she doesn't freak out and vomit all the time anymore, the worst part of taking her to the doctor is keeping her from bouncing off the walls. I realize that most 4 year olds are pretty busy, but dang this kid is busy. Whoever designed the flooring in these exam rooms didn't think things through very well either because all she ever wants to do is play on the multicolored tiles that are right in front of the door. It's amazing more kids don't get whacked by the doors. I can't imagine she's the only kid that does it.
When she wasn't hopping from square to square directly in the path of the door, she was trying to climb between the bench I was sitting on and the chair, or trying unsuccessfully to get hand sanitizer out of the empty dispenser on the wall, or trying to hide behind the exam table, or trying to get soap out of the soap dispenser above the sink, and so on. Busy child. Of course any time I get after her and tell her to settle down, she pulls one of these on me:

When the doctor came in & saw the height that the MA had written down, she thought it seemed off so we went and measured her again. That one seemed off too, so she had the MA do it again. Her measurement was 3cm shorter than the first one she had done so they did it again at the same spot they had done it before. Eventually we kind of just concluded that she's about the same as she was at her last appointment and left it at that. (right around 99cm tall) Height is much more difficult to measure than weight, apparently.

This appointment wasn't as frustrating for me as some of our other recent ones have been but clearly, it was not one of our most helpful ones either. I left feeling like I just want to throw everything we've been doing out the window and start from scratch. I'm frustrated. I'm not frustrated with the doctor, with myself, or with Raya, I'm just frustrated with the entire situation. I'm frustrated that everything is such a slow process and that any and all signs of problems are so subtle but still significant enough to worry about. I knew fairly early on that our feeding tube journey was going to take time and involve a long and complicated process but I guess there's no way that anyone can ever truly anticipate exactly what that entails.

Sometimes I feel like we're just nit-picking to try and find things to micromanage. Weight gain is one of those things. I went into the appointment knowing that we have had too many days recently where Raya did not get enough calories for one reason or another so I was expecting poor weight gain, if any. Because I knew WHY it was going to be like that, I was not concerned about the lack of weight gain. The doctor, on the other hand, was a bit concerned and wants us to start adding calories by adding a small amount of oil to Raya's food or formula. While I see her point, I don't feel like we need to do that yet. I think it makes more sense to get her back on track with hitting her calorie goal every day for a couple weeks, weigh her again, and THEN add oil if she's still not back where she needs to be with her rate of weight gain. Another concern I have with it is that adding oil (which is FAT) will most likely cause her motility to slow down more because when fat hits the duodenum (first portion of the small intestine), hormones are released that signal the stomach to slow down its rate of emptying because it takes longer to break down fat. Slowing her motility even more would obviously be counterproductive so I'd rather give her body a chance to see if it can catch up without the oil.

Medications are another thing that has me frustrated. (She is on everything she's on for reasons and anybody who wants to challenge me on any of them will be playing with fire. Whether or not we've made the right decisions with putting her on any particular medication at any point in time is not up for debate. Just had to get that out there.) The thing that frustrates me is that even WITH the medications that should be controlling her out-of-control reflux, she's still not quite where I think she should be with it. She's taking 2 different types of reflux medication (a PPI and an H2 blocker) and taking either Tums or Maalox for breakthrough symptoms, and the Tums & Maalox are becoming a more frequent thing recently. On one hand, it makes sense that her reflux has been worse because her motility has been worse. When your stomach isn't emptying at a normal rate and food & liquid are hanging out in there longer than they should be, there is more opportunity for stomach contents to be refluxed into the esophagus. If they leave the stomach like they're supposed to, there's not as much there to reflux. Slower motility=more reflux. It's kind of like a clogged drain. If the drain can empty like normal, the sink doesn't overflow. If the drain clogs & slows the rate that the sink empties at, eventually the sink will overflow. We're addressing the heck out of her reflux right now, but without any improvement to the motility, it's futile. (Where's the friggin' Drano when you need it?!)

So back to the medication issue, we had been discussing at a previous appointment that we both felt like we should wean Raya off of one of her reflux meds (the H2 blocker). She had done much better on just a PPI than she had on just an H2 blocker, and we don't want to kill ALL of her stomach acid production since obviously stomach acid is a necessary thing. {note: lest anyone be tempted to tell me that we're doing her harm by having her on any of these meds at all, let me just say that until you have personally experienced how horrible acid reflux feels, just don't say anything at all. in the 4+ years that she's had reflux, the ONLY thing that has controlled it well enough for her to be comfortable is PPIs so please don't tell me I should be taking her to a chiropractor, using xyz essential oil or supplement, or putting apple cider vinegar in her stomach instead. if they work for you, great but they do not work for her. stepping off soapbox} The plan had been to start weaning her off of it in the last 2 months but then her motility & reflux started getting worse and we didn't do it. Today we decided to do it anyway and see what happens. THAT is what I hate. Her whole life it's been, "Let's do this and see what happens." It's not like there's really a different or better way to do things concerning the medical issues Raya has, but I liked living in my little fantasy world where I thought that when you had a medical problem, you went to a doctor, they did tests and diagnosed you, told you what to do to fix it, and you went off on your merry way. Oh to be so blissfully naive again. Don't get me wrong, there are plenty of ailments that can be treated rather quickly & simply, just not the ones we're dealing with. Living in a world of trial and error gets old and today, I'm just done with it.

A few months ago, I had really gotten my hopes up that we were either going to be able to do something here at our hospital to help her or else go out of state to a motility center again where we'd be more likely to get the insurance to approve what we wanted to do. Frustratingly, the things that were discussed never moved past the discussion stage even though I had made it clear that we were on a strict timeline because of the baby, so now none of what we talked about will be happening anytime in the near future. In light of that, I am giving myself permission to take a break. Instead of stressing about what we'll be doing next in order to push things along, I am giving myself permission to do what works and leave it alone. We're not discontinuing anything important, I'm just taking a break from trying to get her back to where she was before we moved 15 months ago (meaning tolerating bolus feeds of 8 1/2 ounces in 25 minutes rather than 2 hours) since that is obviously not happening anytime soon. We will still be letting her eat whatever we can get her to eat by mouth and encouraging her to try new textures & tastes, but I'm not going to obsess over it anymore. We're going to squeeze in one more weight check & one more GI visit before the baby is born (as long as she's on schedule) and then we'll space out our next visit a bit more than we've been doing recently too. I'm tired of micromanaging, so we're just going to stop doing it. We'll keep managing her care as needed, but I just don't have the energy physically or mentally to keep obsessing over every detail like we have been. Some things just don't make sense and some questions just don't have answers, and sometimes it's best to just let it go and do what gets you by.

To sum up the appointment, we will be decreasing & then discontinuing the H2 blocker and then waiting a week or two to see how her body handles being off of it completely before we will know if that's a good thing or not. We will be doing whatever needs to be done to ensure that she gets all of the calories & formula she needs every day, which entails a lot of swearing in my head at the feeding pump lately, and a lot more checking up on the pump. (For whatever reason, the pump tubing has been getting clogged a lot and the pump doesn't always alarm to let us know that it's not flowing like it should be.) We slowed her feed rate down and I've now decided that if slowing it down more is what needs to be done, then I'm okay with doing it and someday we'll start working back towards faster feeds again since her body is telling us that now is not the right time. Oh, and after discussing it, her doctor also does not believe that the vomiting she had going on a couple weeks ago was a virus but rather just a couple of really bad motility days. Given that there were absolutely no other symptoms whatsoever, I'm inclined to agree with her even though that really stinks. We're leaving everything else the same until the weight check in 1 month and we'll see how she looks at that point.

I have to say that since her really off motility week when we basically gave her stomach a reset by doing Pedialyte at a slow rate & then working back up to full formula at a slower bolus rate, she has been a MUCH happier kid. It blows my mind that slowing her down by half an ounce per hour over the space of 2 hours could make a noticeable difference for her but it really has. She just seems to feel better overall. I hate that it takes going backwards yet again in order to get her feeling better, but it is what it is and I'm glad she's feeling good. Fingers crossed that she won't be sick on Christmas this year like she was last year!

By the time we were done at the doctor's office, everybody and their dog had tried to call and/or text me and Raya was bouncing off the walls even more than she had been when we got there. We stopped at the desk on the way out to schedule and thankfully I asked about scheduling a neuro appointment for March too. I'm still so, so sad that our neuro has officially resigned, but thankfully the GI made a couple recommendations for doctors that she thinks we would be a good fit with. I trust her opinion because let's face it, she and I have spent a lot of time together in the last 4 years so I think she knows me pretty well. When I asked at the front desk about scheduling, they told me to call the main office ASAP if there was a specific doctor I wanted to see or else we would be assigned to whoever the neuros decided to assign us to when they divided up all of our doctor's patients. As soon as we got home, I called and was able to get in with one of the doctors that had been suggested by our GI within the time frame that we needed so that's a huge relief. A lot of the local moms have told me that they love the one we're going to be seeing so that makes me feel a lot better too.

When we got home, Raya continued to bounce off the walls until she had been sitting at the table for a few minutes after she had her night meds. Normally she falls asleep about an hour after the meds, but this time it only took 20 minutes. I guess acting crazy all friggin' day long really took it out of her! She's pretty adorable when she's asleep, and especially when she falls asleep clinging to the back of her chair with her mouth gaping open.

Now that I've been nice and negative, I have to say that I'm so grateful for people who are inspired to say the right things at the right times. I was sitting in church yesterday and really just felt like getting up and leaving. Pregnancy makes me restless, I guess. Right now, I couldn't really even tell you what the topic of the lesson was but a sweet friend of mine who has a little boy that was born with some heart defects made a comment that made me glad I hadn't left. She talked about how difficult it was for her to make decisions about his medical care early on in his life and how she realized that she was trying to do it by herself and not letting God guide and direct her like He was willing to. Her son had an NG tube for a while and there was discussion about doing a fundo and G tube, which in hindsight was not necessary and would not have been the best thing for him. She listened to the spirit and decided against doing the surgeries and it was absolutely the right thing for him. In listening to her talk about her experiences and realizing that she was trying to do too much herself, I knew that once again, I have been doing the same thing. I need to stop taking so much of the burden of figuring everything out on myself and let God help me more. It's hard to do. I'm a problem solver. I want to understand the whys and hows of everything so that I can fix what's wrong but 4 years later, we're still chasing whys and hows that we may never understand fully and maybe it's time to just be still and let modern medicine have a break from trying to help us fix things.

Comments

  1. Aww, Im sorry you feel frustrated! Even if you didnt get the exact answers you desired, at least there was small progress. :)

    ReplyDelete
  2. I absolutely LOVE your blog! You are so helpful, ans such an inspiration to me. I know I am "behind" in reading, and I read out of order and such, but they all touch me. This one went right to my soul. I have been talking to other people in my life about how hard it is to just let God take the lead, and give Him your worries. I am a single mom, and I need to make all of the decisions for two medically complicated children. Right now I am in the position of whether or not the G tube and fundo are needed for my son- he has had the NG tube for 11 months. I am nervous as heck, and your blog is like a beacon for me.

    ReplyDelete

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