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Wednesday, August 20, 2014

lots of updates. and some late-night emotional ramblings.

I didn't mean to go this long without updating but it's been a really busy couple of weeks. The kind of busy where as soon as I wake up in the morning, all I can think about is the fact that I already want a nap and I know I'm not going to get one.

So we've had a lot of appointments and we have more coming up. Last Wednesday, we saw Raya's neuro. But first, we waited for a long time. While we waited, Raya's anxiety level got higher and higher and higher. I ran out of tricks to amuse her with so I let her take selfies with my phone. There are about 75 of these gems on my memory card now:
Each time she took a picture and it popped up on the screen, she let out a loud, cackling belly laugh. She has the best laugh!

To put it briefly, the appointment went fine but wasn't the most feel-good, validating appointment. It's resident season. We've had residents shadowing specialists & I've felt like a lot of the attention is focused on explaining things to the resident rather than discussing things with me. That sounds so self-absorbed but really, the point of taking her to specialist appointments is so that I can tell the doctors what's going on, they can examine her, and then give me feedback. Suffice it to say, I miss our old neuro. I like the new one, but there is just something comforting about seeing a doctor that you've seen for your child's whole life.

This time, Raya actually got out of the stroller during the appointment. She still didn't really want much to do with the doctor but she was happy and friendly as opposed to being frowny and hiding all curled up in a ball in the stroller. She did that for a little while too, but that was before the selfie session that got her all giddy & silly.

She is getting too big for that stroller, which is a bummer. I'm not sure what we're going to do because we need to have a stroller she can fit in, but she's getting to the upper limits of what most strollers are made for. We're also getting to the point where people look at my 4 1/2 year old sitting in a stroller while I'm wearing the 6 month old and wondering why my able-bodied daughter isn't walking. When we walked back to get Raya's vitals, the MA (who we've known since Raya was a baby) said, "Raya, why are you in that stroller? Why aren't you walking?" She didn't mean anything by it but the walk from the 3rd floor of the parking garage, through one building, and to the 3rd floor of another building when it's over 100 degrees outside and she's wearing a 5 pound feeding pump backpack is a little much.


Back to neuro. The neuro that diagnosed her with CP at the age of 11 mos was right when she predicted that by the time Raya was about 7 or 8, it would be hard to see any visible signs of CP. The muscle tone issues she had then are pretty much resolved. Her hyperreflexia is not what it used to be either. (that's a good thing) She still has weakness in her trunk but she's doing great overall.

The best thing that came out of the appointment was a referral to a different neuro in the same practice who is also a sleep specialist. Raya NEEEEEEEDS a sleep specialist. Right now we have an awesome band-aid solution to her problem but I want to dig deeper and find out why she can't sleep without sleep meds, and why she can't stay asleep at night. I can count on one or two hands the number of times in her life that she's slept through an entire night without getting out of her bed and without waking up. When they called me to schedule the sleep specialist appointment, they also emailed me a 10 page intake questionnaire. I haven't filled it out yet but just reading over it, I am feeling completely validated in taking her to see a sleep specialist based on how many questions I'm going to have to mark "yes" to. She's a hot mess on paper.


Friday was Piper's turn for an appointment. She turned 6 months old last week (don't even get me started on how fast her babyhood is flying by or I will cry) so she had her 6 month well-check. I have to say that after having Raya and Kaida (who didn't see specialists but had weight checks every 2-4 weeks her first 18-ish months) it is the strangest feeling to have only taken her to the doctor 4 times in 6 months. She's been to more of Raya's doctor appointments than she's been to for herself.

We picked Raya up from school and went straight to the ped's office for Piper's appointment. It was hot and Raya was feeling pretty blah. She had worn a little backpack with a Farrell bag in it to drain her stomach while she was at school because she was having a bad stomach day. While we sat in the exam room, I got her pump set up and started her feed and she passed the time by having her doctor anxiety. She was crabby anyway but the anxiety of being in a doctor's office made it even worse, as evidenced by this picture, which is undoubtedly the best stink face picture I've ever gotten of her:

Words cannot explain how much I love that picture, and that little stink face. While I do expect her to be respectful when we're at appointments, I also understand that having to go to the doctor as often as she does is kind of sucky and not at all what a 4 year old wants to do, and I'm okay with her expressing her disdain. Here's the thing. She has major doctor's office anxiety, but then at the same time she gets all jealous when the appointment is not for her and the doctor is talking to somebody else. She has a hard time understanding that not all appointments are about her.

Piper is doing great. (I can finally say that without feeling like the other shoe is going to drop once it's out of my mouth.) Just for kicks, I looked up what all of the kids weighed at their 6 month well-checks. Ashtyn and Cole both weighed 15 lbs 4 oz. and Raya was right behind them at 15 lbs 3 oz. Piper weighed 14 lbs 15 oz, so she's the smallest out of the 4 of them by a few ounces. I find that amusing since every time somebody looks at her, they comment on how big she is. She's in the 25th percentile just like the rest of them and is still in some of her 0-3 month clothes and comfortably into 3-6 month clothes. Kaida was our little outlier and weighed a whopping 11 lbs 2 oz at her 6 month check-up. Bless her heart, she was just itty bitty.

Piper handled her shots like a champ and took a nice nap when we got home. She's pretty awesome like that. I am so incredibly thankful for that sweet girl. I'd be going insane if I had to deal with Raya AND Piper waking up. She's such a good-natured, calm baby and I just love her!
I don't remember exact timelines with all of the kids but I'm pretty sure she's going to be our latest crawler. She's just not in any hurry to get mobile, which is totally fine with me. She's not really delayed, but she's on the low end of normal as far as meeting her developmental milestones. She has recently discovered how much fun her feet are to play with and I think the fact that she's so good natured and such a content baby is the reason she's not in any hurry to move around.


This week's appointments have been pretty exhausting so far. We had 3 on Tuesday, starting with OT. I had told Raya that morning that we were going to OT, then we were going to get labs drawn (i.e. get a poke), and then to an appointment for me. Halfway through OT, she started to look a little queasy and then she vomited fluorescent yellow bile into the garbage can even though she was plugged into a drain bag. That was a bummer. It kind of freaked out her OT and that was the end of her session.

After that, we went over to the clinic to do bloodwork for both neuro and allergy. That wasn't fun. Because of what the neuro labs were, the phlebotomist couldn't use a tourniquet on her arm since that can damage blood cells. (it was carnitine, lactic acid, and one other one that I can't remember at the moment) Then there were the 4 vials for the CBC and immunoglobulin labs, so 6 vials total.  Raya tried really hard to be calm and brave but it was just too hard. She was on my lap like we always do for blood draws and at first, it seemed like we were going to be okay without an extra person helping hold her still but we had to bring somebody else in. That little girl is insanely strong. She's a tough stick and the lady was afraid she wasn't going to be able to get a good vein without a tourniquet but she got it in perfectly on the first stick. Once the needle was in, I got Raya to take some deep breaths and relax and the ladies were able to distract her and get her to talk to them. Before they were even halfway through, she was laughing and joking with them and told us that the poke didn't even hurt. She is such an awesome kid. When she got done, the lady put a pretty bow made out of coban on top of the coban wrapped around her arm and her GI nurse took her to the special secret prize box. She got over it pretty quickly and was delightful the rest of the afternoon.

Interestingly enough, once the labs were done, her stomach felt a lot better. I am convinced that it was anxiety over knowing she was getting a poke that made her vomit at therapy. I don't know how to help her with that but we are seeing the developmental pediatrician on Monday and hopefully she can give me some suggestions.

After the lab work was done, we headed outside into the windy, stormy weather and drove across town to my ENT appointment. Raya chatted up everybody in the waiting room while I changed Piper's blowout (thank heavens for a stroller that's big enough to do that in!). We didn't have to wait very long for the doctor to come in, and that was much appreciated. The girls were behaving well, thanks to a full bottle and the iPad.

The appointment was pretty disappointing but it went smoothly. It's super fun to go to an appointment and be told that there's nothing anybody can do and you're just going to have to live with the problem. The good news is that I'm not losing my hearing. I liked the doctor, I just wish she could have done something for me. The best part of the whole thing was 10 minutes of sitting in a glorious little soundproof booth by myself with headphones on doing hearing tests & ear pressure tests. If they would have let me curl up in that booth with a pillow and blanket, I would have been a happy girl. I couldn't help but laugh because the whole time I was sitting in the booth, Raya was chattering away at the audiologist. I could hear her through the soundproof booth. I wish I had a picture!


Kaida has had a rough couple of weeks too. She's struggled with her own GI issues since she was about a year old, and stressful things like starting a new school year always seem to throw her for a loop. We were working on cleaning her out over the weekend and when she's not feeling great, she gets emotional & moody. We had a family birthday party for Kaida and my niece on Sunday and within about 10 minutes of being there, my sister-in-law had surprised Kaida by popping out her first loose tooth. There were lots of tears but eventually she was happy about it and the tooth fairy brought her $2 in quarters.


Today's appointment was kind of a downer for me. It was kind of the perfect storm. I was up way too many times last night between having Piper wake up, the feeding pump beep, and then having Kaida get all croupy and work herself into a vomiting panic. I felt really bad for her because it was a scary feeling for her. Ashtyn got her into the bathroom at 1:30 and got things cleaned up while I took care of Kaida. Ashtyn really is a gem. I would be lost without her. She went back to bed and I set up a breathing treatment for Kaida. She and I slept in the living room so I could keep an eye on her and hear her to make sure she was still breathing and all. Go figure, the one time I loan out my pulse ox.

This morning, she had absolutely zero voice and was pretty exhausted so I couldn't send her to school like that. I really didn't want to take her with me to Raya's GI appointment but I couldn't find anybody that could either come and sit with her for an hour between when I needed to leave and when the big kids came home from school or else have her come to their house, so she had to come with us. I hate having to ask for help, and I realized today that part of the reason I don't like asking people to help is that when I can't find someone to help me, it feels like rejection. I shouldn't feel that way, I know, but that makes it even harder to want to ask anybody to do anything for me. It's easier to just figure out a way to do things myself, so that's what I usually end up doing. Thankfully she was feeling good this afternoon, she just couldn't speak above a quiet whisper.

Anyway, this appointment was kind of sucky. First of all, I usually do GI appointments in the morning because doctors tend to be running on schedule in the morning and not so much in the afternoon. We weren't supposed to see her until next week but she's going to be out of the office the day we were scheduled for so they called me and moved it to today at 2:40pm. We got there at 2:25, checked in, and waited. I don't remember how long we were in the waiting room before we got taken back to an exam room, but our scheduled appointment time was 2:40 and the doctor walked into the room at 3:45. 'Nuff said. I am surprisingly patient when it comes to doctors running late. Or maybe just too tired to care today. Kaida had brought the portable DVD player and was watching Annie. Piper was in the car seat drinking a bottle, then playing with her feet and her moose toy that she loves so much and just being happy. Gosh I love her. Raya was being Raya. Busy, loud, rowdy, whiny, silly, and just Raya. By the time the doctor came in, I really just wanted to lock someone else in a tiny room with my kids for an hour and see how they felt. Not that my kids are naughty or anything. They were actually extremely well behaved considering, but it was still exhausting.

The good news is that she has gained weight. She's FINALLY up from 16.1 kg (35 lbs 8 oz) to 16.5 kg (36 lbs 6 oz). She has also grown 1.5cm since her last visit about 6 weeks ago. We're pretty excited about both of those numbers. The other good news is that she is tolerating the J feeds really well. Her doctor was pretty shocked when I told her that we're up to 97ml/hour. We had been stuck at 75ml/hour into her stomach for about 3 1/2 months when we switched back to the GJ tube so having her all the way to 97ml/hour is a huge improvement.

The bad news is that aside from buying her a little extra time off the pump each day, the GJ isn't doing her a lot of favors. We're keeping it for now because she's doing so well with the J feeds, but the way things are going now is not what I had hoped (or wishfully thought) that it would do for her. We talked again about traveling out of state for repeat motility testing. We had hoped to go to Denver but the guy we were hoping to see there is leaving so he's not taking on any new motility cases. Our next options are Boston and CHLA in Los Angeles. Either place would be fine with me. Her GI is going to contact the motility specialist she knows at Boston and see if she thinks it would be worth the effort & expense for us to come out there for testing. At this point, I'm torn about that.

On one hand, it's been almost 4 years since she had motility testing done. Maybe now that she's older, the test results would show more of what's going on with her and give us a better understanding of how her body is working. Or not. It could turn out to be a complete waste of time and tell us nothing. Last time I flew across the country with her for testing, all we came away with was the knowledge that even though we KNEW something was wrong, the testing showed us that her body was capable of functioning in "near normal range". Even though she was forcefully vomiting anywhere from 4-10 times a day every single day even with a GJ tube and her G port on constant drainage and we knew she could vomit things several hours after they shouldn't have been in her stomach anymore, the testing showed near normal function and the specialist's only advice was to try Periactin and to get her off the GJ tube. Emotionally and mentally, I'm not sure if I can handle going through all of the testing (which is exhausting in every way) and then face the enormous let-down of being told things are normal even though we know they are not. Like I told the GI today though, I am at a point where I just want to know if things are as good as they're going to get. Is this her status quo now? At what point do I just accept that her stomach sucks and she's going to be tube fed indefinitely instead of holding out what seems more and more like unrealistic hope that she'll be off the tube within a couple years? I don't know if a motility specialist can answer those questions for me. Probably not, but it might be worth a try again.

The mental and emotional exhaustion of all of this is one aspect of having a medically complex child that is extremely difficult to explain to people. It's easy enough for people to imagine that having a feeding tube comes along with physical challenges, but the emotional side of it is not something that occurs to people unless they have some reason to see it. (meaning I unload on them, which I rarely ever do and it's usually only to select people that I know will understand) Other parents of 4 year old girls are agonizing over what school they're going to send their daughters to for kindergarten next year. I'm agonizing over whether or not to drag her across the country and subject her to a lot of tests that quite frankly really suck and will undoubtedly add to her anxiety about medical procedures & doctors. I'm agonizing over how I'm going to be able to trust the staff at her school next year to handle her tube feeds at school without being power trippy about it or screwing anything up. I know I shouldn't be, but I'm agonizing already about which teacher she will end up with, and if I'm going to have to butt heads with anybody to keep her out of the class that I am afraid she will end up in. I'm agonizing over whether I should be feeding my child into her stomach or skipping it and feeding her into her intestine, even though it seems to mean causing her stomach issues to get worse. That is a horrible thing to have to worry about! Sometimes I just want to be her mom, not her doctor, therapist, nurse, chauffeur, secretary, advocate, and all that other stuff! Just for one freaking day, can I not have to mix up 45 ounces of special medical formula, pour it into a pump, squirt medications into her intestine at 4 different times, plug her in to the pump, drain bile out of her stomach, measure the bile so I know how much fluids to replace, beg her to lick a peach or kiss a potato chip just so I can console myself with the knowledge that she at least interacted with food that day, and wash her bedding when diapers can't hold in all the pee because of how much fluids she's getting at night? Can she just have a one day pass from her food allergies, gastroparesis, abdominal pain, and aversion to eating and have one whole day where she can run around and play like a normal kid without having to wear a feeding pump all day? Where I can just make her a PB & J for lunch and have her sit at the table and eat a big ol' plateful of whatever the rest of us are eating and then not wake up miserable in the middle of the night because of it? I am just so sick of all of this right now. I try not to complain because I know that things could be so much worse, and I have so many friends whose kids DO have it so much worse, but this still sucks. I am normally at peace with all of it. This is what we've been doing since she was 2 months old so we are most definitely used to it, but today I'm just done.

I don't know why it is hitting me so hard today but I think it's because while we were sitting in the exam room today, I had plenty of time to let my mind wander. She was sitting on the bench in her hospital gown (aka the blue astronaut girl dress. we have to call it that or she won't put it on) and I noticed a scar on her ankle. I told her it was a scar from an IV and then pointed to one on the other foot that was also an IV scar. That got me thinking about her scars, and how someday she will have a big fat G tube scar on her belly. But then I had a thought that I haven't entertained before. I pictured her as an adult. It's strange to picture your children as adults. I have always operated on the assumption that all of these issues will resolve at some point and she will eventually have a GI tract that functions normally and grow up to lead a normal life. But what if she doesn't. That's the thought I had today that I realized I'd never entertained. I've heard a lot of my friends talk about not allowing themselves to think too far into the future, but their kids have been diagnosed with serious, long-term conditions. Raya hasn't. She's really not been diagnosed with anything. The things she's been diagnosed with are just symptoms. Until today, I had never thought about the possibility that she may not ever get off the G tube and could struggle her whole life with the same issues she struggles with now. As a teenager, when there is so much emphasis on appearance, will she be able to have a healthy relationship with food? Will having a feeding tube (or optimistically, a feeding tube scar) affect her body image or her ability to have her own family someday? I won't get into detail about all the thoughts that have flooded my mind all afternoon & evening, but suffice it to say that it's been an emotionally draining day for me. Lest anyone should think I'm being negative or pessimistic about her future, don't even go there. I'm not. My heart is just hurting today as I'm realizing that a "normal" body with "normal" digestion may never be in her future. It was easy to ignore that when she was a baby, but she's turning 5 in a couple months. She will be in elementary school next year. She's not a baby anymore. This is not going to just go away.

So there's another glimpse into the mind of a medically complex child's mom. I actually feel a little bit better now. Anyway, between having a frank discussion with the GI about the fact that there may not be anything that anybody can do for Raya and having the appointment be really rushed because she was an hour behind schedule and had a resident tagging along with her, I left that appointment feeling kind of crappy and with a headache. Then I came home and we scrambled to get dinner thrown at everybody and get the house cleaned up before the cub scouts came over, and then I went to the church to take all the old stuff off the bulletin board (which I should have done months ago but haven't) and went to the grocery store for eggs & almond milk. On my way home, I picked up some food for Donny and myself and got a big fat cherry-vanilla Coke. I rarely ever drink pop and I never buy drinks when I get food, but I had a headache that only a caffeinated beverage would fix. I am so happy that tomorrow is Thursday and we don't have any more appointments until Monday.












2 comments:

  1. I understand where you are coming from with the emotional hardship of GI issues. I have a little girl who is 20mo old and has a GJ tube and only diagnosed with symptoms too. I read this as we get ready for another genetics appointment today with the hope that someone has some answers. While I have no cure to make this feeling better, know you are not alone in this feeling.
    For something I can put some insight to, we just got a new stroller with a 75lb weight limit. Our travel system stroller started breaking after a year of use carting our lo around to doctors. I wanted a stroller that would last us a long time because she has low muscle tone in her legs and I did not want to have to look for another stroller when she got older. We found that the Baby Jogger Summit goes to 75lb and honestly I have never found a stroller to be so easy to push. It also has an option to add a glider board to the back for a second child to stand on. Just a thought to make something a little bit easier. :)

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  2. I share your thought process, 100%. Everything that you wrote I have felt exactly. I don't have a diagnosis either, just symptoms and terms that sound like a diagnosis, but really aren't. In the beginning, it was all about getting better. I'm not sure at what point I abandoned that hope (I've been dealing with my issues since I was a little kid, but it didn't become super bad until 10 years ago), but now we're focused on making my life the best that it can be with the issues that I have. I started college this week, even though I'm TPN dependent and working around chronic nausea and vomiting. It's hard, but it's life.

    I wish you and Raya the best, however you find your peace.

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