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**Disclaimer**

**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**


Monday, May 30, 2011

I have no words for this :)

This time, it's EXACTLY what it looks like:
Raya had her first real drink of water today. EVER. I watched the muscles in her throat swallow 3 or 4 times in a row. I got it on video too. I think I'm more proud of that than I was of her first steps. In a lot of ways, this is a much bigger deal. :)

Sunday, May 29, 2011

Mommy's taking baby steps too

Babies aren't the only ones that take baby steps. Sometimes mommies need them too. I can count on 1 hand the number of times I've left Raya with someone other than Donny for her whole 18.5 months of life. She's only been left with 4 other people, one of whom was an RN so I knew she'd be okay if Raya's feeding tube got pulled out. :) It's not that I don't trust other people, it's more that I know taking care of Raya can be stressful even for me, so I can imagine how much more stressful it must be for somebody else who may not know what to do in the event that something goes wrong with her. I was never a "helicopter parent" before, but I think I'm justified in being that way now. :)
Yesterday, there was a really big black belt test for the martial arts students that Donny teaches at the community college and he wanted me to come and take pictures. I was excited about it but knew that there was no way I could take Raya with me. That meant that I had to leave her with somebody for about 3 hours. Luckily, I have a very good friend who isn't intimidated by all of Raya's tubing and body fluids AND was willing to come to my house to watch her so that I would be 3 minutes away in case of an emergency. My friend happens to also be 8.5 months pregnant, which just shows what a saint she is. :) Everything went fine and Raya ended up sleeping most of the time I was gone anyway. It was a good step forward for me. Raya qualifies for respite care and I've been trying to make myself set things up so that I can actually use the respite, so this was a good step forward towards that.
My reluctance to leave her with babysitters isn't the only reluctance issue I have. I've also avoided taking her to nursery at church now for 3 weeks in a row, which is the entire 3 weeks she's been old enough to go. I have a few reasons for not taking her. Here they are:
1. She and I wrestle through the first hour of church until she falls asleep right before it's time to go to nursery.
2. Nursery is like a little petrie dish. There are a lot of germs in nursery that a GI compromised kid doesn't need to catch & can't afford to catch. (no offense to the other parents, but it's true)
3. Probably the most obvious reason is the whole feeding pump backpack and bile drainage bag setup. It would be awful if that bile drainage bag popped open and spilled or if another curious little toddler decided to pull on her tubes.
4. Having her in nursery would be difficult for the nursery leaders. Again, it's not that I don't trust them with her, (one of them is an RN) it's just that she is a lot of work and having her there would make their job a lot harder than it already is.
5. This one is purely selfish. When you have spent as much time as I have pinning your child down and sticking a tube up her nose, holding her still and listening to her scream while someone pokes a needle in her arm or foot or head, trying to keep her from going crazy in the little cage they call a hospital crib, holding her face in your hand while she throws up, trying to make her eat, and knowing that all of those things have damaged the trust she has for you, there is nothing sweeter than the rare moments when she actually WANTS to snuggle with you. These last few weeks where she has fallen asleep at church while I was holding her and slept on my lap for an hour or two have been therapeutic for our relationship. I feel like I am finally gaining some of that trust back that I've lost from her, so why in the world would I want to give that up?
I know nursery would probably be good for her in a lot of ways. She does need to socialize with kids her age and snack time would be good peer modeling for her. I just don't want her going in there with a bag of bile hanging from her waist and a 3 lb backpack on her back. :) Maybe once we get things figured out and get a handle on this bile drainage issue, I'll be ready to send her. As nice as the snuggle time is, that kid is heavy after a while. :)

Friday, May 27, 2011

Cardiology


Surprisingly, Raya's cardiology visit was the MOST pleasant doctor's visit we've ever had. Based on the number of visits we've had, that says a lot. :) She behaved PERFECTLY (other than the poopy diaper) and didn't cry, scream, or puke at all. She was cute and charming and happy the whole time. She had an EKG and since she held so still & behaved so well for that, her heart function looked fine so we didn't have to do an echo. The NP (who I really liked, by the way) listened to all the different parts of her heart and said that her murmur sounded like a very typical innocent murmur. Just to make sure, she had one of the cardiologists come in and listen too and he agreed. It's very common and nothing to worry about. The words, "We won't need to have a follow-up with Raya." were like heavenly music to my ears! We've never been told that before. :) So the cardiology consult is out of the way and I don't have to be paranoid about that anymore. Yay.
Side note, while the NP was listening to Raya, I caught a whiff of a poopy diaper so I changed it while she listened. She said she didn't smell anything at first and I thought she must have completely lost her sense of smell. Then she left the room for a minute & came back and said, "Oh. Now I smell it. That's weird." Which just further illustrates my point that GJ tube/formula fed/abnormally digesting children have very strange poop. The end.
On to other news, Raya's stomach continues to drain massive amounts of fluid. Yesterday she hit a new PR of 505ml. (PR as in personal record. Trying to put a positive spin on it. :) That's just shy of 17 oz. We're doing our best at keeping the pedialyte flowing to keep her hydrated and with the exception of 1 day where she was going for 7-8 hours between wet diapers, she seems to be doing fine with hydration. Now that the triple-digit temperatures are here to stay for the next 4 or 5 months, it's going to be even more important and also a little more difficult to keep her hydrated.
I did get a phone call from the nurse this morning & she said the doctor had reviewed all of my updates (there were many updates) and wanted to know if anything had changed since my last one a few days ago. I told her she had hit 505ml yesterday and that at her weight check, she had lost 12 ounces, which she already knew but I reminded her anyway. :) She said the doctor wants to order a barium study. Hooray, more barium. Ha ha. This time, they'll inject it into her G port and into her J port and follow it to see what's happening in there. She's thinking that maybe the J tube is blocking something so if the barium doesn't flow like it's supposed to then we'll know that's the problem. Optimistic Mommy wants to believe that this barium study will show us the problem & there will be an easy fix and she'll be back to how she was before the tube change. Pessimistic Mommy is pretty sure that this study won't show anything abnormal or helpful because they never do. Darn that Pessimistic Mommy!
Well, that's about all there is for today. Off to change yet another poopy diaper and mop up what's left of the trail of bile Raya left on the floor when she got the cap off the drain bag. Gross stuff. Happy weekend!

Wednesday, May 25, 2011

Usually...

I will admit it. Usually I really enjoy being right. I'm kind of bummed that I was right about Raya losing weight though. She had a weight check today and has lost 12 ounces since we were there a month ago. I had suspected that she was losing a little because when I lay her down to change her diaper, her little pot belly is almost flat and the tabs touch in the middle again. So yeah, she's losing lots of fluids every day and has lost 3/4 of a pound in a month. Not great but really not sure what there is to do about it. GI doctor will be back tomorrow so I'm anticipating (and HOPING for) a phone call or something. On Friday she has her cardiology appointment which should turn up big fat nothing, otherwise known as a innocent murmur like her big sister has. Gotta love a little extra Raya drama the last week of school. :) It's a fitting end to the way we started the school year. :) (She got her G tube 6 days before school started & ended up being in the hospital for 5 days & we missed meet the teacher night and then she was in the hospital again & I missed parent teacher conferences in October.) Good riddance to a crazy school year and hello to a potentially crazy summer! :)

Monday, May 23, 2011

Feeling like a broken record

And the drainage just keeps on comin'. I remember being totally floored when Raya hit 275ml last fall. I was blown away that her stomach would produce THAT MUCH excess fluid. That, of course, was NOTHING compared to the last 7 days. In the last week, she has lost 360ml, 430ml, 470ml, 470ml, 395ml, and yesterday was a whopping 495ml. If it wasn't for the relentless vomiting that got us to the GJ tube to begin with, I would yank that thing out (well, deflate the balloon and gently remove it) and just put in a regular old G tube but that's not the answer either. I don't know what the answer is. Apparently nobody does. Just keep pushing the Pedialyte and let us know if anything changes. And how long can that go on without something changing, and what if it changes for the worse? The doctor is out of the office until Thursday. Fabulous. We have a weight check on Wednesday which will either confirm my suspicion that she's lost weight this week or else there's some other explanation for why the tabs on her diaper can now touch each other in the middle. So for now I guess we'll just keep dragging around the drainage bag (which I need to make a cover for because people stare at it and stare at her) and keep dumping in the pedialyte and keep running the feeding pump 19 hours a day. And maybe later in the week I won't feel so complainy.

Friday, May 20, 2011

Thank heavens for Pedialyte!

Today I'm thankful for Pedialyte. We would be in big trouble without it. We are now on day 4 of draining unbelievable amounts of fluid from Raya's stomach, and I think the only thing that's keeping her from getting dehydrated & needing IV fluids is the pedialyte. Things started out a little slower yesterday and I thought maybe her system was starting to regulate a little, but by 11pm (when we start new feeds & measure drainage from one day to the next) she had lost 470ml of gastric fluid. Just for comparison's sake, that's 15.67 ounces, which is almost 1 pint. That is a very large amount. When she was inpatient in October, the GI doctor on call the second week wouldn't release her until she was losing less than 200ml/day for a couple days in a row. At that point we were giving her about 300ml of pedialyte a day to make sure she was adequately hydrated. We tapered it off as her system got itself regulated and then she didn't need it anymore after a couple of months.
Knowing all that, I think it's easy to see why I'm having to work at keeping myself from being concerned. If 200ml/day was cause to keep her from leaving the hospital 7 months ago, then why is 470ml/day okay now? I haven't heard back from the nurse at all today and I'm hoping that means that the doctor will be calling me this afternoon. I'm anxious to know what her intentions are and how long we'll be letting this continue before we do something to intervene. I don't know what that would be, but this isn't healthy.
Last time the nurse emailed me back yesterday she told me to keep adding pedialyte every 4 hours equal to the amount she had lost during that time so that's what I've been trying to do. Yesterday I replaced 420ml of lost fluid with pedialyte and then ran out of hours in the day to run it in. So like I said, pedialyte is probably keeping us out of the hospital.

That brings me to another point. (this is mostly for other parents of tube-fed kids) From time to time, the supplies we have needed from home health have changed. She started needing the pedialyte so we were getting that from home health as well as her formula. After the doctor said she didn't need to have it mixed with her formula anymore, I stopped giving it to her so I stopped getting it from home health even though our insurance had never changed the status of their approval. Then in February when Raya had ear infections and I didn't want to give her formula while she had a fever, I realized that I should never have stopped ordering the pedialyte. I have now learned that even if you don't think you're going to need something, if your insurance allows you to keep getting it, KEEP GETTING IT. You never know when you might suddenly find yourself needing it, especially when it comes to formula or pump supplies.
So anyway, for now we're pumping in the pedialyte and readjusting to life with 19 hours a day on the feeding pump. She is definitely keeping us on our toes! (in more ways than one :)
Saying "Hello" on her "phone" :)

Wednesday, May 18, 2011

Still draining

I had hoped that I'd wake up today and Raya would miraculously be digesting again but it didn't happen. Well, I shouldn't say that because she is still pretty much digesting her formula, although sometimes it smells exactly the same coming out as it does going in. Gross.
Anyway, she had a total of 360ml of drainage yesterday. That's 12 ounces. It might not sound like that much but when she only gets 30 ounces of formula and another couple of ounces of water, 12 is a LOT. Today has been pretty much the same story except that she didn't have the 30 minute crying/screaming/writhing session followed by vomiting like yesterday so that was nice. She seemed to be feeling a bit better today but the drainage just keeps on coming. I've had a couple people ask me what exactly is draining out of her and what it looks like so here's what we're dealing with:
It's mostly bile mixed with saliva and anything else she happens to swallow. I've been emptying the bag about every 2 hours because the bag starts to get heavy and pull on the tape that's holding the extension tube onto her stomach. Not only that but see the little green cap on the bottom of the bag? That stupid thing has popped off twice tonight and spilled bile all over the floor and Raya left a trail behind her until we realized what happened. So yeah, I try not to let it accumulate much because then if it spills there's less mess to clean up. And speaking of the bag, it's not actually made for draining bile out of a stomach. It's a catheter bag for urine. It's the only thing our home health company could come up with that works for us. I actually do like it a lot better than the bag the hospital in Ohio gave us and there's not even any contest between this and the bottle she used to drag around:
So what do we do about this problem that we thought we were past? I emailed the nurse today (several times) and gave her updates. I'm sure she loves getting emails about things like bile and poop. :) I talked to her this afternoon and she said that the doctor thinks (and she agrees) that her system is just reacting to the trauma of having her tube changed and that hopefully over time it will improve. I agree but I still think that there must be something more to it because when she had the GJ tube changed in Ohio, things immediately improved and they chalked it up to better tube placement than she'd had before. That makes me think that this time, we just have worse tube placement than the tube she just got replaced.
The nurse also said that they could/might do a GJ tube contrast study to make sure there's no kinks or anything in the tube but we both agreed that it seems kind of pointless because if the tube was kinked or not in place, the feeds wouldn't be going through. Not to mention that I don't want to go back to Phoenix again this week.
Dr. S wants me to drain & measure the fluid every 4 hours and replace what she's lost with pedialyte added to her formula. At her current rate of feed and going off of what she drained yesterday, that means we're going from being on the pump for 9 hours at night and not at all during the day to 17.5 hours on the pump. Not fun. We were LOVING not even having to take the pump off the IV pole next to her crib and she had gotten used to not having to wear her backpack anymore, so this is a bummer. But the good news is that this time we're managing things at home and not at the hospital like before. As long as we can keep her hydrated we'll be fine and the doctor hasn't even mentioned the "H" word. :) She just wants us to keep monitoring things and updating her, so that's what we'll do. And since Raya's weight gain has tapered recently, maybe the added calories from the pedialyte will help a little.
Good thing this girl is cute!

*11pm update: Raya's total drainage for the day is 430ml, which is just over 14 oz. That's almost half of her total usual daily fluid intake.

Tuesday, May 17, 2011

Setback.

I knew that a tube change was inevitable but I was dreading it. Why? Because the placement of a GJ tube seems to be a tricky thing. When she got her first one back in October, she immediately started having huge amounts of bile in her stomach that we had to drain out through her G tube. Then when we went to Ohio in December, they had to take out her GJ tube for testing and then put in a new one. For whatever reason, after they changed her tube, the drainage went WAY down and has continued to decline to the point where recently, we've only had to drain her stomach during pump feeds (mostly at night) and rarely at other times when she seems to have an upset stomach. Instead of yellow or green bile, she has been draining almost clear fluid. Until today.
So this morning, I woke up to the dreadful sound of her filling her diaper with liquid diarrhea (sorry, TMI) which her GI doctor suspects may be a by-product of the contrast dye they used when they placed the GJ tube. Ok, we'll wait that out & hopefully it will go away. When I picked her up to get her out of bed & clean up that mess, my heart sank a little when I saw that the G tube drainage bag was almost completely full of bright yellow bile.

100ml of yellow bile. I don't feel like using the energy to look through my notebooks and see when the last time she had that much drainage was but it's been at least 2 or 3 months, maybe more. (As a side note, I've decided that the radiologist from Ohio needs to come to Phoenix to teach our radiologist how to place GJ tubes and the IV team from Phoenix needs to go to Ohio to teach their IV team how to place IVs in kids who are difficult to stick. Just a thought. :)
I emptied the bag and put it back on, and 3 hours later she had another 55ml. It's not the end of the world that she's suddenly having all this drainage, but right now I feel like I've been plunged back into October or November minus the vomiting (knock on wood). The real down side to this is that as long as she's in need of having her stomach drained, I can't put any formula (or anything else) in it so this may set us back on transitioning back to gastric feeds. That means that at least for today, her nice vacation from having to wear her backpack all day is over because now she'll need another 250ml through the J tube, plus extra fluids to replace what she's losing through her stomach (about 6 hours' worth). Bummer.
Well, I guess the lesson here is that you should enjoy the breaks when you get them because you never know when things will change. Things will be fine and we'll survive, it's just disappointing. Now I'm even more thankful for the lady that stopped me in the lobby of the hospital yesterday and out of the blue started telling me about how her son didn't eat until he was 5 years old. She told me not to stress over it because it will get better and she will eventually eat. Her son is 12 now and was sipping a slurpee and nodding in agreement. I appreciated it yesterday but on a disappointing morning like this, I appreciate it even more.

Monday, May 16, 2011

You BROKE your kid's GJ tube?? Who DOES that?!?

Yep, that would be me. :) I broke Raya's GJ tube. Remember how in my last post I mentioned a paranoia about her feeding tube or extension tubes getting caught on something? Well that's exactly what happened. I took her to her 18 month well check this morning, which is always fun. (ha ha) The MA weighed & measured her and then she was just running around in her diaper waiting for the doctor to come in. I usually tuck in her extension tubes so they're not just dangling but she didn't have clothes on to tuck them into. I reached out and picked her up and the extension tube that was hooked to the G port got caught on my chair. The tape ripped off of her stomach and the entire G port just popped out of the GJ tube and fell on the floor with the extension tube still attached. I sat there stunned for a second trying to figure out what had just happened and then picked up the port & extension tube, wiped off the port, and shoved it back in to stop the flow of stomach contents that was soaking her shirt & shorts. About half a second later, the pediatrician walked in the door with a big smile on her face and asked us how we were doing. I laughed and said, "Fabulous." and showed her the tube.
This is what a GJ tube is supposed to look like:

See that part in the picture above that says "gastric port" on it? The whole thing came out. This is what it looked like after it broke:
The tube was pretty worn out anyway. The extension tubes had to stay on all the time or else the ports would leak. And notice the grungy yellowish color. Yeah, gross.

Anyway, her 18 month check-up went pretty well. As usual, I filled her in on the things she hasn't already been given reports on from Raya's other doctors. She had heard about most everything except for the recent issues with Raya being bowlegged. Since the PT seems to be helping that though, we're not going to see a specialist about it. We will be adding a cardiologist to the mix soon though. Raya has had a heart murmur since birth but the pediatrician never could hear it at her previous check ups. (probably because of all the screaming and puking) Today, Raya was on her very best behavior though, and even smiled at the doctor while she was listening to her heart. Since Raya was still & quiet, she said she could hear the murmur so she had to refer us to cardio to get it checked out even though she said it sounds like an innocent murmur. I figure, what the heck, what's one more appointment. :) She's made a little bit of a drop on her growth curve since her last visit too so we're just keeping an eye on things. She's still around the 50th percentile so it's not like she's wasting away or anything. :)
So after that visit, I had taped her GJ tube together to keep the port from coming out & leaking stomach fluid everywhere but I knew that wouldn't last very long. We still hadn't gotten a phone call from the PCH scheduling department about changing her tube and it had suddenly become much more urgent so I decided to pop next door and show the GI nurse. She laughed about it a little and said she'd get the order sent over. The good thing was that it was the G port, which we can live without, so if they couldn't get us in today we could still feed her while we waited.
After that we went home and waited. They called at 12:35 and told me to be there by 2:00, so I had to hurry and load the girls in the car, pick the 2 big kids up from school since I wouldn't be home in time to pick them up after school was out, and take them to their cousins' house. We pulled into the parking garage at 1:59. It was the first time we had been to the actual hospital since they opened up part of the huge new addition and it is SO nice! I got to park on the first floor of the parking garage instead of the 3rd floor. (the first 2 floors of the old garage are reserved for physicians) We were all checked in by 2:15 and then we had to go back to the other end of the old part of the hospital to wait for the procedure. By then the port wasn't really staying in very well anymore so her shirt was soaked and did I bring a clean one? Of course not. :)
They finally came & got her about an hour later. She was NOT a happy camper when I handed her over to the nurse! It only took them about 10 minutes to change it this time and no sedatives were required. :) I could hear her coming down the hall when the nurse brought her back out and she was clutching the little beanie baby piggie they gave her. (that kid has a HUGE collection of hospital pity stuffed animals! :) I think this was the shortest visit we've ever had there. Now she has a sparkly new tube. I feel like it should make that little "ting!" sound like the white teeth on the Orbit gum commercial. I didn't realize how cruddy the old one had gotten until I saw the new one. :)
She came home and went to bed for a while. I wanted to just let her be but there were no extension tubes hooked up to the GJ tube so I had to get her up. Here's the new tube, which is the wrong size and upside down, by the way, and the piggy they gave her:

Sunday, May 15, 2011

Raya's first day of nursery

Raya turned the magical age of 18 months old last week. Why is 18 months a magical age, you ask? Because that's when kids can start going to the nursery class at church. :) When the other 3 kids hit about 12-14 months, I started counting down the days until they could go to nursery. 3 hours of church feels like forEVER when you're trying to keep a squirmy toddler from running all over the place, and you can forget trying to hear anything that's being taught in the lessons.
It's been a little different with Raya though. I've been counting down the days with her too but there's been some dread in the countdown. I know part of it is just me wanting to stay in control of as much of her life as I can and I need to get over that. Part of it is my germophobia. I know they try to keep things clean & sanitary but nursery is like a little petrie dish. Raya has somehow managed to stay very healthy through the winter & spring and I don't think it's any coincidence that her vomiting has decreased and her desire to let food into her mouth has increased during that time frame. So yeah, I'm hesitant to send her in and risk her getting sick. Especially because with her extreme feeding & oral delays, she's still putting EVERYTHING in her mouth.
Then there's the whole feeding tube issue. I'm trying to decide how to handle her feeding schedule on Sundays. Do I just change things up one day a week so she doesn't need anything during nursery or do I leave things how they are and just interrupt every so often to give her water or formula? There's also the risk of her tube getting caught or pulled on, which is probably another irrational paranoia but still a valid concern, especially because she's never really been in close quarters in a room full of kids her age & older.
When it came down to it though, none of those ended up being the reasons Raya didn't go to nursery today. Did I mention that when we moved and started going to our new ward, our church time changed to 11:30-2:30? TERRIBLE time to have church. So instead of taking Raya to her first day of nursery, I did the customary 45 minutes of wrestling with her in the hallways while she cries & squirms and then finally falls asleep during the last 5 minutes of Sacrament meeting. She was out cold and there was no way I was going to wake her up! I told the nursery leader (who conveniently happens to be an RN) that if she woke up, I would bring her in. She sat on my lap like this:
until 20 minutes before church was over. After that, she sat calmly on my lap and played with her syringe and bottle of water and made cute faces and chatted with the lady sitting next to us, so I didn't take her to nursery. Maybe next week, maybe not. :) As long as she'll snuggle on my lap and sleep through 2 hours of church, I see no need to rock the boat. :)

Saturday, May 14, 2011

A little epiphany

Tonight I was talking with my dear friend Brooke about some of the things that go along with having a child with special needs. She has a darling 8 year old daughter with Down Syndrome, so she gets it. :) I was telling her how the last couple of times I've talked to Raya's GI doctor I've told her how frustrating it is for me to not have a label for Raya's health problems, and that at the same time, I don't understand why I have such a need to put a label on it. Why would I want to label my child with a disability or syndrome?? 
While Brooke and I were talking (well, mostly I was talking and she was listening :), I was telling her about some of the blogs I stalk on a daily basis that are written by moms of children with heart defects. Why do I stalk heart moms? It started out when I was looking for blogs that had anything to do with feeding tubes. I found quite a few that caught my interest, and it just so happened that they were all kids who had either had heart surgery or were waiting for heart surgery. I was so drawn to these blogs because I admired the community of support that all of these heart moms had for each other. I felt a kinship with them because I understood life with a feeding tube and frequent trips to doctors and hospitals and having tests done and blood drawn. At the same time though, I didn't belong to their community because my baby's heart was perfect except for a small, almost undetectable murmur, and although her issues were serious in a way, there was never a time when we wondered if she woud live or die.
Then Raya was diagnosed with cerebral palsy. I thought to myself, okay, now we're getting somewhere. Still though, CP is not Raya's biggest challenge. There was no visible lesion on her brain so her diagnosis was based solely on her physical symptoms of increased muscle tone and hyperreflexivity (is that a word??). CP did not explain her serious vomiting problem, nor did the diagnosis offer any sort of relief or change of plans for the management of her vomiting, and she is a very mild case so she really is not affected the same way that other kids with CP are. Then there was the sensory processing disorder diagnosis. That tied a few things together and explained a LOT of things, but it isn't totally to blame either. I'm so sick of not having a better answer than "We don't know what's wrong with her, she just throws up and doesn't eat or drink." when people ask me why she has a feeding tube or how long she'll have it. I only WISH I could just rattle off an answer like, Oh, she has XYZ syndrome.
Throughout the last 18 months, I have been so very blessed to meet moms who can relate to me and who I can relate to because our children have similar issues, but as I was talking to Brooke about it tonight, something finally clicked. Maybe it's not that I'm desperate to find a label to stick my child with, although it would be nice to know exactly what we're dealing with so that we might have a better idea of what our future will look like. Maybe what I've really been searching for is a place that we belong. I can relate to moms of kids with heart defects because many of them have feeding issues as well. I can relate to moms of children with autism or genetic syndromes because many of them have sensory issues as well. I can relate to moms of kids with feeding tubes because let's face it, Raya has the mother of all feeding tubes. It doesn't get much more invasive or unnatural than a GJ tube. I can relate to moms of children with anatomical abnormalities that affect their digestive system because Raya has had digestive problems, even though they pale in comparison. I can relate to moms of kids with a lot of different types of special needs purely because I now understand what it's like to have one, but that relation only goes so deep because my daughter doesn't have the same thing that their children do and vice versa. There are such great support systems out there for families of kids with specific challenges, but so far I don't feel like we really belong with any of them.
Now that I've typed that, it sounds pretty dumb. I still don't know why it matters so much to me and I need to let it go. We may never know what is at the root of Raya's chronic vomiting so there might not ever be a label, just the same long list of little labels. At this point, I am just SO grateful that we FINALLY have the puking under control. It took 9 very long months of throwing up multiple times a day followed by 6 very long months of balancing medications & bile drainage to get us to where we FINALLY are now. She hardly throws up at all anymore and that is nothing short of a miracle. She did throw up a couple days ago but that was my fault for running her daytime formula into her stomach a little too fast. Lesson learned. The only time she has really thrown up recently is when I forget to plug her stomach drainage bag in at night and she ends up throwing up whatever is in her stomach in the morning. Other than that, she's better than she's ever been. It took giving her stomach a 7 month break from food to get her there though, which just makes the mountain she has to climb that much higher.
Well, I'm rambling now and I feel a little silly even posting this because it's a little bit crazy, but sometimes life is a little bit crazy and that's okay.

Friday, May 13, 2011

Public Service Announcement: PAY ATTENTION TO MEDICATIONS!!

I know I joke a lot and I try to keep things light, but I'm being completely serious here. This is especially for anyone who has a child that's on multiple long-term medications. We had a close call today with what could have been a serious overdose if I hadn't been paying attention.
Raya has been on Neurontin for about a year now. Up until this last month, there wasn't a generic for it. It came in a delightful strawberry-scented liquid that was a solution of 250mg/5ml. Her current dose is 2ml twice a day, so she's getting 100mg of the medication twice a day. At her last appointment, I had the doctor rewrite all of her prescriptions for me because we were out of refills. I had the neurontin filled this week and went to pick it up yesterday. Normally, we get a small bottle with 120ml in it, but the lady pulled out 2 HUGE bottles with a total of 600ml.

New bottles on the left, old bottle on the right. HUGE DIFFERENCE!

Naturally, I asked why we suddenly had these enormous bottles and she said it was because the generic came in a different concentration so Raya would need 10ml (2 teaspoons) twice a day instead of 2ml (less than half a teaspoon). (I would also like to know whose bright idea it was to make it BLACK LICORICE flavored. Like ANY kid is going to want to ingest that!) It still seemed a little odd to me but I couldn't remember what her previous concentration had been (she has 4 meds all in different concentrations so I forget which is which) so I took it home and put it in the fridge. This morning, I was getting ready to give her meds and noticed that the small bottle that's almost empty, DOES have the same concentration as the new stuff. In other words, if I had given her the new stuff according to the directions on the new bottle, she would have gotten 1000mg instead of 200mg, which is 5 TIMES what her dose is SUPPOSED to be. That is a HUGE difference, and goodness knows what may have happened to Raya if I had just gone with what the pharmacist said and what the label said and given her the 5x higher dose.
I'm not laying blame and surprisingly I'm not angry at anybody because there were several factors involved here. I shouldn't have asked the doctor at the last second to write refills, she should have made sure she was writing them correctly, and the pharmacist should have picked up on the sudden 400mg/dose increase and verified it w/the doctor to be sure it was right. So like I said, I'm not angry at anybody, I just wanted to remind parents out there that it is ALWAYS a good idea to DOUBLE CHECK every time you pick up meds from the pharmacy to make sure that things haven't changed unless they were supposed to. You can't do that unless you know ALL of the details of your child's medications. You need to know the concentration of the medication, dose they receive, and how many MG of the medication they receive, not just how many ML are in the dose. This could have been a disaster for us if I hadn't noticed that the neurontin & gabapentin DID have the same concentration, unlike what the pharmacist told me, and made several phone calls to figure out what was going on. A parent is a child's strongest advocate.
On the bright side, gabapentin has a 1 year expiration date so I won't have to refill her prescription until October. :)

Thursday, May 12, 2011

MBS #3

Raya had her third modified barium swallow study today. An MBS is used to determine whether or not someone is swallowing correctly. In Raya's case, we needed to be sure that when she swallows very thin liquids like water, she is protecting her airway and the liquids are going down the way they're supposed to.
She had her first MBS last May and we weren't even able to complete it because she had been off oral feeds for about 6 weeks while we waited to get it done. She refused to let any of the barium into her mouth, let alone swallow it.
Her second one was last September and she handled it like a champ. She swallowed all of the thicknesses that we tried with her. However, when she was given the ultra-thin and thin consistencies, she did not swallow them correctly and they pooled near her airway before she finished swallowing them. That's a bad thing because it puts her at high risk for aspirating, or having fluid enter her airway/lungs, which then leads to respiratory infections & pneumonia. So at that MBS, they determined that if she was given liquids, they needed to be thickened to nectar consistency in order for her to swallow safely. Lucky for us, we never had to mess with the thickener because she had no interest in drinking liquids anyway. :)
Today, she was not very cooperative AT ALL. Now that her tests are fewer & farther between, they freak her out more. She must have realized that it's not normal to be subjected to all that stuff. :) When they do a swallow study, they take an x-ray table that's normally in a horizontal position and tip it into a vertical position & attach a chair to it. Once the kid is strapped into the chair, the radiologist moves the camera into position on the other side of the chair. That's when Raya freaked out and didn't want to sit nicely in the chair anymore. Luckily she calmed down. We started with the ultra-thin barium that's the same as water. I put it in a cup with a straw/spout that she likes to pour water all over herself with thinking that she might take the barium from it too. Yeah, not so much. When that failed, we just went straight to the syringe. She's no dummy and she knew exactly what I was trying to do with the syringe and clamped her little mouth shut. I did get enough in for the speech therapist & radiologist to see that she did successfully swallow it without any risk to her airway. We moved on to the thin consistency & tried to let her have it from a cup since lately she's been interested in "drinking" from a cup. She wanted to hold the cup but wouldn't let the barium into her mouth, which led to the syringe again & we had the same wrestling match followed by more successful swallowing. See how cute she looks with a little barium mustache? :)

Since that went fine, we jumped up to the pudding thickness from a spoon, which she also hates. By this point, she was getting really stressed and even though I didn't want to push her too hard, I really needed to know that she's safe swallowing so that I'm not paranoid about letting her try food so I kept pushing. I got the pudding thick in her mouth and that's as far as it went. I got it onto her tongue & lip and it didn't move from that spot until I wiped it out of her mouth 2 minutes later. Big fat tears were rolling down her cheeks and she cried like I had really hurt her feelings. So there was no swallowing of the pudding thick but since she did well with the really thin ones, we are considering her to be a safe swallower. When she progresses to really eating different textured foods, we will be able to tell if she has trouble swallowing solids and if needed, we can do another swallow study. Hopefully things will be fine from here on & we won't need to.

Wednesday, May 11, 2011

Worn out

Q: What happens when you take a baby to 3 long appointments in one day?
A: When her physical therapist comes over the next morning and tries to work with her, she acts like this:

Not to worry though, after a nice 3 hour nap, she was back to this:

Tuesday, May 10, 2011

My big 18 month old girl

Does turning 18 months officially make a baby a toddler? If so, then we have a toddler. Bittersweet. :) She spent her 18 month birthday going to appointments from 9-5. Very long day for both of us, but she was SOOOOOO incredibly well-behaved today. The girl I took to the allergist, OT, and surgeon today was a FAR cry from the girl who used to not be able to make it through a simple weight check without getting so worked up that she'd puke.


She loves to say, "Beeeeeee!" when she sees the camera, hence the funny face. :)
 Today, she was cute and sweet and charming. She said, "HI!" and smiled at people. She stood up on the big girl scale and let the MAs measure & weigh her. She sang to herself and yapped my ear off and read (destroyed) magazines during the HOUR that we sat in the allergist's office before he came in to see us. She cooperated with everything the OT did with her (except get in the ball pit, which completely freaked her out) and had a really great attention span today. (Possibly because Kaida wasn't there today. :) She took a nice, long nap in the car during the 2 hour break between OT and the surgeon's office, during which I gave her 2 of her 4 G tube bolus feeds that she kept down like a champ.
I fully expected a meltdown at the surgeon's office. She has never been a fan of him. (I don't know what her problem is, he's handsome and his cologne smells SOOOO good. :) She has puked at his office every time she's been there. :) Today though, she was like a new woman. She stood up on the scale all by herself and was very patient with the new MA that didn't know how to work the scale. She got bored during the 40 minutes in the exam room so she had a little dance party with music from my cell phone. The surgeon walked in and Raya was gettin' jiggy to "Take a Chance on Me" by Abba. :) She sat on the little stool and let him look at her tube and never whined at all. Then we stopped by the DOC Band place down the hall to say hi to the cute girls that work there. They couldn't believe how big Raya's gotten. :)
We stopped at the produce market on the way home and got a bunch of fruit & veggies and then went to the pharmacy, which ranks right up there with the bank & the post office as one of my LEAST favorite places to take kids. They have a drive-thru but I had to go in because I was trying to get them to fix 2 things that they screwed up on last time. That turned into a half hour wait, so by the time we got home it was about 5:00. Very. Long. Day. It was still a good day though.
We got a lot accomplished. At the allergist, we discussed the fact that if we want to re-test Raya for food allergies, we would have to take her off of the medication that keeps her from dry heaving all night & morning, and that is something that NONE of us want to do. Nobody wants to rock that boat! :) We've decided that the best thing for Raya would be to continue offering her as many single-ingredient foods as we can and stay away from the common offenders like dairy, nuts, eggs, etc. The reality is that with Raya being suddenly willing to put a lot of different foods in her mouth, we need to encourage her by giving her a lot of things to try, even if it means that she gets a little bit of the things on the list we're trying to avoid. Mainly though, we'll stick to things that are very simple and try to find things that she likes enough to work on her eating skills. We also discussed the changes that have taken place since Raya switched formula. She's had eczema on her legs since she switched from Neocate to Peptamen so he gave us some hypoallergenic moisturizer to help with that. She has also started to drop a little from the weight curve that she had going. She's still between the 25th & 50th percentile but she's dropped some in the last couple of months. She'll have her 18 month well check next week and then a weight check w/the GI doctor in 2 weeks so if she's not moving back up on the curve by then, we'll start talking about increasing her caloric intake either by increasing her volume or by adding duocal to her formula.
Our OT session today was one of the most productive ones she's had. After being bored out of her mind at the allergist's office, she was more than happy to go play with her OT. :)
The visit with the surgeon went exactly how I predicted it would go. I gave him a brief rundown of how things had gone from the time we last saw him in August/September until now and explained the problem with the leaking J port. He agreed that the ports are wearing out and the backflow valves don't work (hence the bile backing up into the extension tube) and said it needs to be changed. However, since it's a GJ tube and not just a G tube (which I could have changed at home by myself), it has to be changed at the hospital by the interventional radiologist, so all they could do for us was call scheduling to try and get us in faster than if I just called them myself. It was kind of a pointless appointment but sometimes you just have to jump through hoops. Honestly, I really enjoyed my day alone with Raya. She was so good today and we had a really nice day together.
This evening, I knew she was exhausted and thought about putting her to bed right before the rest of us ate dinner, but then I figured she might as well stay up and "eat" with us. I put her in her high chair at the table with the other kids (aka her peer models :) and fixed plates for the 3 big kids. Normally I just bring Raya an empty plate or bowl with a spoon in it, but I figured what the hey, I'll give her a couple french fries. Everybody, including Raya, folded their arms for the blessing on the food and then I gave them their plates. Raya picked up a french fry in each hand and started playing with them. She licked them, broke them in pieces, put some pieces down her shirt, and dropped some pieces into her chair so she could smash them with her bum.

Putting a french fry in her mouth without it actually touching the inside of her mouth :)
Then I gave Ashtyn some cut up mangoes and Raya started pointing at it and grunting, so I gave her a piece. Then she wanted a fork, so I gave her one and showed her how to stab the mango with it. She got one little taste of it and then refused to put it in her mouth after that, but she seemed intrigued by the texture/feel of it and played with it for a few more minutes.
Stabbing the mango

"kissing" the mango :)

It probably sounds silly but I was really proud of her. Proud of the "positive interaction with food" and proud of her for being so good at all of her appointments. Given what some of the other days have been like where we've had multiple appointments, today was nothing short of amazing. My baby is growing up!!

Thursday, May 5, 2011

She's a muppet

Recently, I have taken some deceptive photos like this:

(never mind the package of toilet paper on the floor in the kitchen)


 And this:
which make it look like Raya is eating. And while it may appear that she is eating a cracker, there is nothing but biting happening. No swallowing going on except for a few crumbs that happen to make it down the hatch. The rest of what she "eats" ends up like this:
 I don't remember how old I was when I finally realized that Cookie Monster wasn't actually eating the cookie, but today I realized that although Raya is making GREAT strides in her willingness to put food in her mouth (mostly crunchy things that she can bite), she's pretty much like a muppet. She is making NO effort to swallow the crumbs and still goes to pretty good lengths to get them out of her mouth. It is still progress though and we're happy as can be with her recent interest in biting food.

We are also very excited about this:

This one was snapped about half a second after a giant stream of water shot out of her mouth:
The pictures are still rather deceptive. There is a lot of water coming out of the bottle and a LOT running down her face or being spewed across the room when she tries to swallow & it goes down the wrong way (bring on the swallow study next week!) BUT the important thing is that she actually LIKES the water and likes the way it feels in her mouth and she is really trying to swallow it. That, my friends, is HUGE progress.
Thanks to my absentmindedness (is that all 1 word??) last week when I forgot to clamp her G tube & take off the drainage bag while we had dinner, we were able to see that she did actually swallow a few little crumbs. And some toilet paper/kleenex. And another piece of a paper out of a dvd case. It is very exciting to see her start to make little bitty steps towards eating, even if she does still seem to favor paper products and rocks. :)
She's such a ham lately. All she has to do is see that there's a camera in my hand and she yells, "BEEEEEE!" (we have the kids say "me" for pictures instead of cheese) and pulls this face:
 And as you can see, the main objective of her "lunch" was to make the biggest possible mess with 1 cracker and a cup or so of water.
I would say mission accomplished. :)

I had to schedule an appointment with the surgeon to check out Raya's GJ tube. Not too excited about that especially since the soonest we could get in is Tuesday and we already have 2 other appointments on Tuesday. Somehow Raya ended up with 6 appointments next week, which will break her previous record if we end up going to all of them.
I'm pretty sure it will go a little something like this:
Me: Raya's J port keeps leaking bile.
Surgeon: (looks at tube) It seems to be leaking bile. We need to change it. Call IR (interventional radiology) and make an appointment. Nice to see you again. Goodbye.
Me: Okay, thank you. Goodbye.
I'm SOOO tired of the gross yellow spots on the front of her shirt from the tube leaking and having to try and keep the bile off of her skin. I've been taping extra gauze around it but she loves ripping that off so it doesn't stay there very long. Hopefully soon we can say goodbye to the leaky tube!

Monday, May 2, 2011

AMT clamp=no more G tube/GJ tube/J tube leakage!

Raya has a new favorite accessory. Or rather, WE have a new favorite Raya accessory. It is this beautiful little piece of silicone (I think??):
What is it, you ask? It's called the AMT clamp. It keeps my squirmy and mischevious almost 18 month old from unplugging her feeding pump (either accidentally or intentionally) from her extension tube, which results in a very big mess. As in formula running into the bed all night from the feeding pump and bile running into the bed out of her small intestine. Both of which equal a big smelly mess in the morning. Not only that but it can be dangerous for a child to have a feed come unplugged at night. They lose all the formula that leaks out into the bed, which you have no way of measuring or knowing exactly what time it got unplugged. They also lose fluids that leak out of the unclamped extension tube from their digestive tract. AND, we've learned the hard way that some of those fluids that leak out (i.e. bile) can be very caustic on skin so if it leaks onto their skin at night when nobody is awake to fix the problem, they could end up with blisters/burns.
Anyway, I had seen a couple of posts here and there on feeding tube message boards about the AMT clamp and kind of filed it away in the ol' memory bank because we didn't really have a problem with her unplugging her feeds at night. Then the night before I made her monthly order with home health, she unplugged her feed and it was AWFUL, so I finally ordered one.
Here's what it looks like when it's in use:
Having the tube come unhooked at night hasn't been a huge problem for us. It's only happened a handful of times but it's not pleasant no matter how many or how few times it happens so we are very excited to have it. Anything that means less laundry is exciting. :) (now if we can just get somebody to make one to keep the medicine port from popping open!)

If anyone who reads this has a child that has ever woken up in a puddle of formula, you NEEEEEEED one of these! Here's the packaging with the order numbers in case you need them. :) 


Raya likes it too. It has given her something new to tinker with when she wakes up in the morning instead of just ripping everything out of her backpack. :) She still didn't wake up dry this morning because there was a leak from her G tube drainage bag AND her lovely little J port on her GJ tube has started to leak. I guess that's what happens when you have an extension tube hooked up to it 24 hours a day for 6.5 months. Here she is this morning saying "Beeeee!" because she saw me holding the camera.

Another little gadget that we have found to be VERY helpful is this (the one on the right):
It's called a 5 in 1 connector and its real purpose is to connect oxygen tubing. Normally, we use an extension tube with a y-port on it for her J tube feeds because there is a separate medicine port that accepts the small tips on medicine syringes. We happened to somehow run out of the y-port tubes last week though, so we had to use regular straight port tubes instead. They are bigger, so the small syringes don't plug directly in to them. We plug the connector into the extension tube and then pop the syringes into the connector and squirt the meds in. Works like a charm. :)
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