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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. 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? 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.












Monday, August 11, 2014

Floundering

Floundering. I like that word. Mostly because it's a kind of fish, and I like fish, but also because it's a pretty good description of how I feel about trying to deal with Raya's medical issues. In the last 4 1/2 years of tube feeding, I have become somewhat of an expert on feeding Raya. I have learned what to expect from her body and I've gotten pretty good at managing the day-to-day stuff. What I have not yet figured out how to do is align my expectations with reality. It's hard to do that when you have no idea what reality is going to be on a long-term basis.

How long do we continue to do the same things we've been doing? I have always hoped and believed that we will at some point be able to get Raya to a point where she can eat and drink enough to not need the tube anymore. What if that's not what her body is capable of though? And how long do we wait? At what point do we accept that tube feeding will be a long-term thing for her, and how long is long-term anyway?

*sigh* I just don't know what to think anymore. We do things for a while and may or may not see positive changes. Things stagnate so we try something new. Sometimes it makes me feel like we're making progress. In some ways, she's made huge progress. The most notable thing on that list is that she doesn't vomit a few times a day anymore. In the grand scheme of things though, we still have a child who does not eat more than a few calories a day (and usually zero), doesn't care if she ever eats or not, is allergic to a lot of difficult to avoid foods, can't tolerate more than a couple ounces per hour of food or formula in her stomach, and would starve to death pretty quickly without the feeding tube. (yeah, that's the harsh reality of it) How long will it be before things start to work better and/or she learns how to work around her body's physical limitations?

So I'm floundering. Do we bother with another round of out-of-state motility testing? When we did it before, I had such high hopes going into it and although I am glad we did the testing, the results did not give me what I wanted. Answers. What I got was someone telling me that her digestive system was functioning in "near-normal range". They said that even though her symptoms said otherwise, the test results said that her stomach worked fine and we should get her off the GJ tube and back to gastric feeds, which we did. They pretty much told us there was nothing they could do for us. Does that mean that we just keep managing the day-to-day stuff and hope for some day in the future when her digestive system will work better? Now that we're 3 1/2 years down the road and not really much better off, would it be worth the trouble, the expense, the time, and the physical and emotional exhaustion of traveling somewhere else in the country just to do some tests that might give us results that are as disappointing as the last ones? Or maybe this time around, things would be different. Now that we've seen her body at its best and then seen things go backwards to where we are now, do we have enough information to help a motility specialist better identify where her problems lie and maybe come up with new ideas of how to help her? I don't know. Even if we do motility testing and they do actually identify the location or source of her problems, what is there for anybody to do about it?

We thought we had a new place to go for motility testing, but now we've found out that the doctor we wanted to see is not accepting any new motility cases and is leaving his current location this fall. It's not the end of the world but it means that instead of a 6-8 hour drive or a 1 or 2 hour flight, we may have to hop a plane and fly clear to the east coast instead. Just thinking about it makes me tired.

Maybe I'm not doing enough praying and studying. Maybe I'm being too stubborn to see things differently. Maybe the timing isn't right, or maybe we're on the right track and we just need to be patient for a few more years. Usually I'm fine with the way things are, but right now I'm just having a hard time with not knowing what to expect in the long term. If this is as good as things will ever get for her, I can live with that, but if there's something that can be done to improve her quality of life, I would do it in a heartbeat. The problem is that I just don't know. Not only do I not know, but I have not even the slightest guess. I have hope that things will get better for her, and I believe that it's possible that she might someday be able to eat & drink enough on her own to not need to use her tube anymore, but I just want to know how to fix this for her. This is harder than cleaning up puke & poop. I just wish I could get some answers to my unanswered questions.

In the mean time, I will just keep doing what I can and counting my blessings that she is mine.



Thursday, August 7, 2014

Clogged feeding tube

This post should make anyone who has ever felt dumb for making a mistake with their tube fed kiddo feel better. **Disclaimer: If the feeding tube you are in charge of caring for ever gets clogged, talk to your doctor about how to unclog it!**

Our day started out pretty good yesterday. We got the big kids off on the school bus and then I got Raya all dolled up and ready to go to school. She is LOVING that she doesn't have to take her feeding pump to school and went on and on about how much she loves just wearing 1 backpack.

As soon as she got home from school, her respite provider came and I got her pump ready and her midday doses of meds and her probiotics. I had a whole list of things I needed to do while her respite provider was here, so I plugged her in to the pump and started her feed and then I went to flush her G port so I could do her probiotics. When I was connecting the G extension, I noticed a fleck of something bright orange in the stem of the GJ tube. Pretty sure it was carrot that worked its way in there when we were venting/draining her stomach overnight. It was a little bit stuck but I pushed & pulled with the syringe and got it to go through into her stomach. The tube was clear (or so I thought) and so I got the syringe with the probiotics and started to push it in. I had opened the capsule, dumped the probiotic powder into a cup with about 10ml of warm water, let it sit for about 15 minutes to dissolve, and then stirred it until there were no clumps left. Then I drew it up into the syringe, shook it again, and started to push it. This is the same way I've been doing it the entire time she's had the GJ tube (almost a month this time around) and the same way I did it when she had a GJ tube when she was younger.

Right as I started to push the syringe plunger, Raya moved or did something (I don't remember what) and I stopped pushing the plunger for about 2 seconds and reached to grab something off the counter. When I started pushing the plunger again, it moved a little bit and then just stopped. I pulled back on the plunger and nothing happened. I pushed again and nothing happened. I pushed a little harder and the med port popped open and sprayed probiotics all over both of us. The G port of her GJ tube was clogged. Not just a little clogged, but completely and totally 100% blocked by a combination of undigested carrot that I thought had been flushed completely out and probiotics. It felt like I was pushing against a brick wall. I may have had some swear words in my head at that point.

I did all the things we tell people to do on the Feeding Tube Awareness facebook page when they're dealing with clogged tubes. First, I got a 60ml syringe with about 10ml of very warm water. (because it's summer in Phoenix and that's the only kind we have right now) I tried to draw back on the syringe and nothing came out, so the plunger just got sucked back in when I let go. I pushed, but nothing budged. Well, actually, water did spray out of the closed med port that I was holding shut with my finger. I thought maybe a smaller syringe would help so I tried the same thing with a smaller one. It didn't help.

Since warm water hadn't helped, I switched to a single port extension tube and tried the pushing & pulling with an empty 60ml syringe. For reference, the extension tubes I was using were the clear Y port and the single/straight port in this picture:

That didn't help either. When I tried pushing warm water with the 60ml syringe again, the water actually squirted back at me from around the tip of the syringe that was firmly pushed into the extension. At that point, I decided I'd better call the GI nurse. {GJ tubes can only be changed by a radiologist under fluoroscopy, which is why a clogged GJ tube is a very bad thing} I left a voice mail about the clogged GJ, which I was pretty well convinced we'd have to change, and the school paperwork that I needed signed by the GI doctor. She called me back a few minutes later and asked me what I had tried. I told her what I'd already done. She suggested putting Coke or Sprite in, and I told her I would try it but that I knew there was very little likelihood of that helping since I couldn't get ANYTHING to go in or out, not even a little bit. I asked if they had ever used or heard of Clog Zapper (made by Corpak for the purpose of unclogging clogged tubes to avoid having to change them) and she said she'd never heard of it, and neither had the other nurse. She said she would have to call Interventional Radiology (IR) and ask them what else I could try because they're rather possessive of the GJ tubes and don't really like to have any other departments messing with them. (understandably so; that would be like spanking somebody else's kid, I suppose)


She called me after she had talked to IR and said they had told her to have me try using a 1ml syringe and "push really hard" because the pressure from the smaller syringes can be more effective than larger syringes. I tried that and it was a total joke. It did NOTHING. I drew the plunger all the way back, pushed the syringe into the extension tube (it fits directly into the single port extension) and pushed really hard. All that happened was that when I let go of the plunger, it popped back out. I pushed it as fast & hard as I could and it didn't feel like it was doing anything at all. After a few more minutes of working on it with different sizes of syringes, with and without warm water, I decided we were not getting anywhere and that it was going to have to be changed anyway, so I did something that we always warn people on FTA not to do because there is a good possibility of damaging the tube. (so I am absolutely NOT suggesting this to anyone) Since she has had an AMT Mini One for 2 1/2 years now, we have a lot of those little blue introducers that come in the kit. I thought maybe that would help push through the blockage, so I put it into the G port on the GJ. Maybe if it had been another 2-3 inches longer, it would have helped. If it had just been the little bit of carrot that I'd had to clear out earlier, it would have helped, but it wasn't and it didn't. At that point, I gave up and called the nurse back to tell her to go ahead and put in the order for a tube change. It was very frustrating because if it had been a regular G tube, I could have cleared the clog even if it meant taking out the tube, clearing it, and putting it back in. (which I am also absolutely NOT suggesting to anyone else) Being a GJ though, there was very little else I could do that I hadn't already done.


While I waited for a call from the IR scheduler, I decided I had nothing to lose by continuing to try things since the only alternative was to change the tube anyway. I texted a few friends that live close by and found somebody that had Coke that I could try. It was comical showing up on my neighbor's front porch with a little cup and asking her 12 year old daughter for some Coke. The confused look on her face was precious. :) I took the cup of Coke home and sucked some up into a 60ml syringe. I connected it to the extension, wrapped a washcloth around it in case it popped out or leaked, and pushed. Since the stem on Raya's tube is a little on the long side, I could actually see the Coke not being able to go into the tube at all. I pulled back on the plunger, hoping that it would somehow end up sucking some of the Coke into the tube, but it didn't. I gave up on that and drank the rest of the Coke. I decided to try air again. When I pushed really hard on the syringe, I could actually see the silicone expanding as the tube got filled with air. That was slightly disturbing but made me feel like the tube was beyond saving and that I had done the best I could.

On a whim, and probably also by divine inspiration, I decided to try one last thing. I got the 3ml syringe out again (my favorite syringe size), pulled the plunger all the way back, pushed it into the extension tube, and pushed in the plunger as hard as I could. It didn't do anything productive and just popped back out. I thought that maybe a bit of sustained, constant pressure on the blockage would help, so I pushed the plunger all the way in and taped it so it couldn't pop back out.

I left it like that and let Raya play with her respite provider while I tried to get some things done. When IR still hadn't called me 30-45 minutes later, I decided to check on the syringe. I took off the tape, expecting the plunger to pop back out but it only came out about 1/3 of the way, and it was much more slowly than it had before. I spent another 10 minutes pushing & pulling with syringes, with and without water. After a few minutes, I could tell that I was making a tiny bit of progress at breaking through the clog. It got to where I could feel that a tiny bit of water was going through, so I pushed hard with a 60ml syringe that had about 10ml of water in it, and it FINALLY popped through the clog! It almost made Raya vomit, but it cleared! I let her hold a puke bag while I got some warm water and slowly flushed the G port really well to make sure the clog was completely cleared. I also did a happy dance and said a prayer of thanks for the inspiration to be patient, keep working at it, and to try taping the syringe plunger in.


I called the nurse back and told her I had gotten it cleared by putting the 3ml syringe in the extension and taping the plunger in. Her response was, "Oh, that was smart!" Yes, yes it was, thankyouverymuch. She was happy to call IR back and cancel the change order, and I was happy to not have to show my face in IR and know that they were probably referring to me behind closed doors as the mom that clogged her kid's tube and talking about how dumb I must be to have done that. (and they probably wouldn't have, but yeah, they probably would have)  Most importantly though, I was really happy to not have to put Raya under anesthesia again in such a short time frame. I need to go back and count how many times she's been put under. It's more than the average person will be in a lifetime though, I'm sure.

SO. That is how we cleared the rock-solid, unclearable clog from Raya's GJ tube. It took up my entire afternoon and I didn't get anything else done that I needed to. I did, however, celebrate my victory by changing out of my spit-up-crusted, Coke-spattered, probiotic-spattered shirt that I'm pretty sure I had slept in the night before and put on my new and very awesome shirt:

Because let me tell you, unclogging a very clogged GJ tube, narrowly avoiding a trip to the hospital and anesthesia, and not letting myself feel like total crap for accidentally clogging the tube in the first place made me feel like Wonder Woman.


The moral of this story is this. EVERYBODY makes mistakes. Freak tube clogging accidents and other feeding tube-related accidents happen to everyone, even people who have been doing this stuff for 4 1/2 years and spend many, many hours a week answering other people's tube feeding questions & helping them troubleshoot when things go wrong. Forgive yourself, learn from it, and move on!

Sunday, August 3, 2014

The final countdown...

We are about 9.5 hours away from the first day of school. Am I ready? Yes. Are we prepared? No. No, we are not. The big kids are 99% ready, I just have to make sure everybody eats breakfast, wears dress code-approved uniforms, and has a good lunch packed. And drop off Benadryl & Epi Pens and the corresponding paperwork in the health office for the boy. Raya is a different story though.

I can't even express how grateful I am that Raya has the same teacher & classroom aide this year and that the health aide is the same person as last year too. We have made some big changes this summer (namely switching to a GJ tube and all that comes along with that) and it would be SO much harder to explain everything to brand new people. I'm expecting a mountain of paperwork this week since we have ZERO of the health forms that we had to have filled out & signed last year. I take that back, I do have a copy of the anaphylaxis emergency plan that I planned on having the allergist sign a few weeks ago but then we rescheduled that appointment (couldn't get in until September) and didn't get it done yet. The only thing I have is the two forms that have to be on file for the Benadryl & Epi Pens. Oh, and speaking of Benadryl and Epi Pens, the bottle of Benadryl in her emergency kit expires this month and the Epi Pens I thought were good for a bit longer expired in June. I know they're still good, but I also know the school will require unexpired meds, so I'll have to switch them out ASAP.

AAAAAAAAAAND to make things even MORE awesome, remember how Raya is on heavy-duty antibiotics for the infected lump in her arm? Guess what comes along with heavy-duty antibiotics. Diarrhea. Fluorescent yellow, bile-smelling, skin-burning diarrhea. Today there were at least 4, maybe 5 poopy diapers. She normally has one every 1-2 days and it's soft but not THAT soft. It's been yucky. The first thing I repacked into her backpack was a new change of emergency clothes. Oh, because guess what I realized tonight. I never unpacked her backpack from the last day of school. It still had everything in it. The shirt was a size 3T, so if she had ever needed that for some reason, it would have looked ridiculous. Now she has emergency clothes that will fit her.

AAAAAAAND guess what else I realized. When she got her GJ tube last month, they did not have a 16fr tube in stock so they put in a 14fr. We only have 16fr G tubes, so in the unfortunate event that her GJ tube should get pulled out at school (or at home), we probably will not be able to fit any of our spare G tubes into the hole because the hole is smaller now. Awesome, right? On the bright side, she would have to have anesthesia to get the GJ replaced anyway so she wouldn't be awake to feel them dilate her stoma. (some bright side, eh?)

So we're definitely not starting off the year as smoothly as I would like to, but we didn't last year either and everything turned out fine. If we can get through tomorrow and the rest of the week, I think we'll be fine. The staff at her school has always been respectful of my main concerns for her (i.e. not feeding her anything that I haven't sent myself or approved in order to avoid accidental exposure to food allergies and not doing craft projects with stuff she's allergic to) and we have all been on the same page in the past about pretty much everything, so I think we'll be okay. (fingers crossed)

Thursday, July 31, 2014

Summer break is winding down

Yes, really, the kids go back to school on Monday. The first Monday in August. It's early compared to the rest of the country but we're ready. It's too hot to do all the fun outdoor things that people who live in cooler climates get to do, so the kids might as well go back to school while it's still hot (112 degrees today) and have a few breaks during the school year when the weather is nicer.

It's been a nice summer. We haven't done anything big and exciting (except for the big kids going to the karate tournament in Vegas with Daddy) but we have stayed busy and had about as much fun as I've had the energy for. We're trying to pack in a few more fun things this week before summer break is officially over.

Yesterday was the last time I'll have to take any of the older kids to therapy with us. (thank goodness. bless their hearts.) Taking extra kids to therapy is not always pleasant but sometimes we just have to do it. Kaida used to have no choice but to get dragged to therapy with us, but now she goes because she wants to. We are so blessed to have a really great OT who is very kind about finding ways to have Kaida help with Raya's therapy program. With the exception of 1 therapist, all of Raya's therapists have been good about trying to let Kaida participate when it was possible. (one of them was just downright rude to her sometimes but that's in the past) Kaida is a great reader now, so Raya's therapist let Kaida read the questions off of the cards to Raya while Raya balanced on the balance disc and put blocks in the bucket.
I can't get over how grown up Kaida looks in this picture. She was a teeny little 2 year old when Raya started all her therapies and now she's about to turn 7.

I decided that Piper might as well do some therapy too and made her do tummy time while Raya crawled back & forth through the tunnel. That gave Piper something to watch, which distracted her from thinking about how much she hates being on her tummy. Win-win.

We also had feeding therapy yesterday. It was another in what will be a long string of bittersweet moments involving Piper and Raya. Even though we haven't officially started Piper on solid food yet, she was MUCH more interested in the peach I brought with us than Raya was. The therapist loaned me one of those mesh food bag things and Piper wasted no time mushing every last bit of that peach through the bag. There was nothing left but stringy bits.
She really did consume as much or slightly more peach than Raya did. Raya is just not feeling like eating food now. She has gradually lost interest over the summer and is down to practically nothing most days.


Today was our last swim day with friends from church. I didn't take any pictures. I also forgot to put sunscreen on Raya, as evidenced by this picture I took later in the afternoon while we were at the library:
Okay, well it doesn't look that bad. Thankfully she had on her swim shirt & shorts today so she was much more covered up and her face seems to be the only thing that got burned. We have had a great routine this summer of going to the library every week and the big kids have absolutely loved it.
My sweet little Piper has been a pretty cooperative library-goer too. With the exception of a couple of near-blowouts, she has made the library easy on me.


Before the library today, we had Raya's meet-the-teacher. I am so, so happy that she has the same teacher she had last year! We were able to talk to the teacher and the health aide both, and I filled them in on the changes that have happened over the summer. The GJ tube is obviously the biggest change, and the plan is to take advantage of the shorter pump time and send her to school without her feeding pump, She will be SO happy about that! I'm going to have to take some time this weekend to get all her emergency supplies together and everything else the health aide needs to keep in her office, and make sure all the paperwork is up to date. (it's not. I have work to do.) Raya decided to show off and wear big girl underoos to meet-the-teacher. It was our first trip out of the house without a pull-up or diaper on, so it was kind of a big deal. She was SO excited to tell her teacher what she was wearing and that she's been using the potty a lot over the summer. She really has been doing well with it and I'm starting to get my hopes up that she could be out of diapers before kindergarten.


We are 3 days into the antibiotics for the cellulitis in her arm. Just to review, here's what it looked like Sunday morning a few hours before I took her in:
It had spread significantly between Saturday morning and Sunday morning and had developed a hard lump under her skin, and was hot to the touch. I was actually relieved when the doctor told me he was putting her on antibiotics because it validated me bringing her in.

Now we're 3 days in and here's what it looks like now:
I circled the area that was red when we went in Sunday evening. The redness is pretty much gone except for the original little bump in the middle that she scratched, which set the whole thing off to begin with. It's hard to tell in the picture but the redness has been replaced by bruising, which is either from the pressure of the J tip that was used to pop open the sore so they could swab it to culture it, or from the pressure of the now huge lump that has formed under her skin.
The distance between my fingers in the picture is how big the hard lump is. It will be interesting to see how it continues to evolve over the next few days. She will be on the abx until next Wednesday, so I'm crossing my fingers that she doesn't have the "severe diarrhea" that the pharmacist warned me about but it's very likely that she will. I've already seen a difference in her stools, which I will spare anyone from hearing about. Hopefully the medicine is doing its job and won't have too much collateral damage in the process.


Monday, July 28, 2014

Cellulitis, bile vomit, and other happenings

I have realized this weekend that I use a lot of energy focusing on not letting myself get sad/upset/disappointed/worried/discouraged by things. There's nothing wrong with that, it's just an observation. Better to spend energy NOT letting myself get sad/upset/disappointed/worried/discouraged then to waste energy doing any or all of those things, right??

So we had a pretty good weekend overall but there are some crappy things going on for Raya too. We'll start with the good. First, while the big kids and Daddy were gone to karate Friday evening, we got to enjoy a wicked thunderstorm. It was so close that we could feel the thunder and it rattled the house. It was fabulous. I love thunder!! It rained pretty hard & fast too, as is typical with an AZ monsoon storm. The power went out too, so since it had cooled off a lot outside (from about 116 in the late afternoon/early evening to about 85), we opened up the doors so we could enjoy the storm. She then announced that she really REALLY needed to put on a warm jacket because it was raining outside. Never mind that it was still 85 degrees with 100% humidity.
 
 
She had a great time playing, even though it meant she was able to successfully fight off her sleep meds for the night. The power was out for about an hour, which gave me plenty of time to think about the fact that although I always encourage other people to make sure they always charge the feeding pump every night, we had not charged hers the night before and when you're using it 14-17 hours a day, the battery charge doesn't last more than a day or two. I have repented and we're being vigilant about charging the pump now.
 
Saturday night we had another storm with more lightning and before it rained, I snapped a few pictures and got this pretty one:
Well, as pretty as it can get with a garage and another house in the way.
 
 
Ah yes, and I also snapped this awesome picture during her OT session on Friday:
 
Instant classic. I love that picture. :) She was thinking REALLY hard to try and answer the question her therapist had asked. I think it was "name 2 parts of a building" or something like that. Good stuff.
 
There was also this precious little moment while Daddy & the big kids were gone:
 
Raya has no shortage of pet names for her baby sister. About 20 times a day, we hear her use her high-pitched baby talk voice to say, "Hello, my angel cutie bug! How are you? You're such a cutie angel!" and so on. It's sweet. :)
 
 
What's NOT sweet is that things aren't going as smoothly with the GJ tube as I had hoped. It's going about the way I expected, but not the way I hoped. We've had vomit this weekend (which I was kind enough to not take pictures of. You're welcome.). Thankfully it's only been in the middle of the night and not late at night, first thing in the morning, and throughout the day like she used to do, but it's still not okay. The thing about GJ tubes is that while it allows us to feed directly into her small intestine at a faster rate than her stomach can tolerate, the J portion of the tube holds the pyloric sphincter partially open and partially blocks it. This equates to bile backing up into her stomach and to her delayed gastric emptying being even MORE delayed. Last night, she vomited at midnight and threw up refried beans that she had eaten at 10 am. It absolutely should not be in her stomach 14 hours later. If anything, it should be at the other end of her digestive tract by then. She threw up Saturday night and needed a quick bath, change of clothing, change of bedding, and a drainage bag connected to her stomach. Sunday night, she threw up and was on complete and total sensory overload when I was trying to clean her up. She had her ears covered the entire time I was trying to wash the puke out of her hair and off of her body, and could not/would not sit down in the tub because she couldn't handle how the water felt. It was the perfect temperature, but she couldn't handle how it felt for some reason. Once I got her cleaned up and drained her stomach (which I was trying to avoid needing to do by using a Farrell bag to vent her stomach, but that apparently was not enough to keep her from puking), she was fully awake and back to her normal personality. That out-of-sorts, sensory overload mode is a little worrisome to me so it was good to see her get back to normal within an hour or so.
 
Our other adventure this weekend was a new one for Raya. She has had some itty bitty molluscum bumps on her arms & a couple on her legs for a while now. (FYI, molluscum contagiosum is a skin virus that causes little bumps on the skin and can take a year, more or less, to go away) The molluscum bumps themselves are not a big deal. They're tiny and you barely even notice them, but she woke up in the middle of the night a few nights ago feeling itchy all over, and she scratched at one of them that was on her arm. I caught a little glimpse of it on Friday afternoon or Saturday morning and noticed that the skin around it looked a little red. Saturday evening around dinner time, the redness had spread, so after her bath, I drew a circle around it with a pen so we could see if it spread more. Here's what it looked like Saturday evening:

The red bump in the middle is the molluscum, which previously had been skin colored, not red at all. By Saturday evening when I took these pictures, it was a little bit swollen and the red area was a little bit hard but not hot and she didn't have a fever or anything oozing out of it, so I decided that it didn't warrant a late night trip to urgent care or the ER. (I avoid the ER like the plague.)
 
On Sunday morning, it had spread pretty significantly and was harder than it had been Saturday night, and was pretty warm to the touch.
 
Since the urgent care we always go to doesn't open until noon on Sundays, we decided we might as well go to church and take her in afterward. While we were at church, it looked a lot better. It was barely even red anymore. By the time we got home though, it was more red than it had been in the morning and had spread farther, and was hot and hard, so it was time to go in. I was afraid it would be one of those times when I take her in to urgent care and they tell me I'm overreacting and she's fine, but it was not worth the risk of waiting.
 
It was our fastest ever urgent care trip. The MA called us back before I even finished signing paperwork and the doctor came in before the MA was done taking medical history & writing down meds & allergies. It happened to be my favorite urgent care doctor. (and yes, I realize that it's kind of sad to have a favorite urgent care doctor) He's awesome. I had told Raya they wouldn't do anything that hurt (which I later realized that I shouldn't have told her because it usually ends up being a lie) but he did his best to make it quick & painless for her. They used a J tip to pop it open. (J tip = little thing that looks like a pen that uses compressed air to inject lidocaine & numb the skin; usually used to numb the skin for an IV placement or labs) It popped that little bugger right open. She cried because the area around it was hard & swollen and painful, and probably more so because she saw blood and blood=pain if you ask a 4 year old. She cried for about a minute and then she was over it. She's pretty tough like that.
 
The doctor swabbed it so they can do a culture and make sure it's not MRSA. Since it's fairly likely that it could be MRSA though, he prescribed her an antibiotic that MRSA is usually susceptible to. She absolutely needs to be on it, but it really sucks that she absolutely needs to be on it. I feel like we JUST got her gut bacteria back in a healthy place after wiping it all out when she was so sick in February, and this will probably screw it all up again. There's not much we can do other than keep giving her probiotics, which she's already been getting. And pray. Which we've also already been doing. Her GI tract is not in peak condition right now already, so I'd be lying if I said that the prospect of what the antibiotics might do to her didn't scare me. Cellulitis is not something to mess around with though, so it is what it is and we'll just do the best we can to manage whatever the antibiotics do.
 
We were in & out of there in just under an hour and then we headed to the pharmacy to get the prescription filled. Thankfully we got there before they closed and they were kind enough to fill it for us on the spot so we could get her started on it that night. She was in quite the mood while we were at the urgent care & at the pharmacy, and thought that everything was hilarious, including herself. She was cracking herself up left & right. In an attempt to keep her somewhat quiet, I let her take lots of pictures of herself with my phone.
 
You know you're the mom of a chronic GI patient when the pharmacist tells you to expect severe diarrhea from the antibiotics and your first thought is, "Ooh, maybe that will increase her gastric motility too!"
 
Because nothing is ever simple with this girl, we then had to figure out whether it was going to be better to put the antibiotics in her G port or her J port. Long story short, I've had to put it in her J today so that it actually moves through her and she doesn't puke it up, which she may or may not have done last night. I couldn't identify anything but refried beans and bile in last night's vomit. The redness on her arm had spread more this morning and it looks like there is some bruising or discoloration around it too. She felt pretty good today with the exception of a few moments of nausea. I still think she would feel better if she ate a little bit, and I was able to convince her to eat some potato chips when I gave her the first dose of abx into her G port this morning.
 
I'm getting rambly but my point is that the GJ has not gone the way I hoped it would and if it keeps up like this, we'll probably have to go back to a G tube, which will be very disappointing for me since we'll inevitably have to slow her feeds back down. The idea of having to go back to a G tube and slow her feeds down makes me feel like I'm running in circles. Actually, it's more like I keep trying to run in circles but keep running into a brick wall instead. It's all very frustrating. Sometimes I just go over everything about her in my mind and think, "Really?! Why is it so friggin' hard to just digest food and eat!?!" But we'll keep plugging away just like we always do and I will keep reminding myself that although I try hard to do everything I can do to "fix" this, it is not in my control or my power to do that and I need to just keep relying on the one who IS in control to guide and direct us in what we should be doing.

Tuesday, July 22, 2014

Why my healthy baby sometimes makes me sad

Piper, 5 months


Being a parent comes with a lot of unexpected twists and turns. Truth be told, I don't think there is any possible way to anticipate what it is going to be like to be a parent, no matter how many kids you already have or how much experience you have working with kids. There is no way to know how you will handle situations that arise or how you will feel when certain things happen because you have no idea what your child's life will be like. No matter how much you think you know about raising children, you have no idea what it's like to raise any one particular child until you're doing it. My experiences with each of my children have been similar in many ways, but also vastly different because of their different personalities, temperaments, preferences, and health. I didn't know what it was like to be able to give a baby table food until kid #2 came along, because kid #1 didn't get her first tooth until she was 14 months old. I assumed all kids would be terribly messy eaters because #1 and #2 were pretty messy, but then #3 came along and was such a neat, tidy eater that we rarely even used bibs with her. Kid #1 was an amazing sleeper, but kid #2 kept me feeling like a zombie for months and STILL gets up between 5 and 6 every morning. You get my drift. They are all so different.

Within the last month or two, I have finally been able to exhale a bit. By that, I mean that some of my early concerns about Piper have subsided. I haven't talked much about it, but there were some things she was doing early on that scared me. She may not have been hospitalized by the age of 2 months or had a feeding tube placed, but things were not peaches & cream with her for the first several weeks. Even so, it was not like Raya's first few weeks. Although there were similarities in that I had concerns about both girls early on, I could see that they were vastly different and I knew that my experiences with Raya were casting an ominous shadow on any and every little concern that I had about Piper and making them seem worse than they probably were. I had anticipated that. I knew before I was even pregnant with Piper that pregnancy and having another baby was going to be emotionally and mentally taxing in a way that none of my others had been, simply because of the way that having a medically complex child and many friends who have much more complex children than Raya has changed me. Simply put, I know too much about what can happen to ever be as calm and oblivious as I was during all of my other pregnancies.

One thing that I did not anticipate though, was that there would be times when I would look at my healthy, typically-developing baby, feel a wave of overwhelming sadness, and burst into tears. It seems crazy, I know. Who could be sad with this sweet little creature around??

I can't even remember now exactly what was going on when that happened last week, but it was not the first time and probably won't be the last. It was last Monday, when she turned 5 months old. I had been holding Piper and snuggling with her, and was suddenly hit with a wave of emotion that felt like a ton of bricks. I looked at her sweet, calm, happy face and had sort of a flashback of Raya at 5 months old that broke my heart all over again.

When Raya was 5 months old, we were on our 3rd month of tube feeding. This was taken the day after she turned 5 months old:


She had just had her first experience with anesthesia a few days before, when she had her first MRI:


At 5 months and 2 days old, she had her last bottle and then went NPO ('nil per os', i.e. nothing by mouth). That was also when she went on 20 hour a day continuous feeds. I'm sure that if I had known it would be her last bottle, I would have taken pictures of her drinking it. She was a pro at pulling out her NG tube, and we couldn't put socks over her hands anymore because it was holding her back developmentally.

We were working hard to try and correct her torticollis (crooked neck due to tight muscles on one side, from her position in utero and made worse by her cerebral palsy that we didn't yet know about). That meant being conscious of her positioning in the car seat, while we held her, and during naps so that her neck & spine were being stretched the right way:

A week or so after her 5 month birthday, she was fitted for her plagiocephaly helmet, which (contrary to really irritating websites that call it 'baby flat head syndrome') was also a result of her position in utero and exacerbated by torticollis and CP. I really want to kick whoever started calling it baby flat head syndrome. That is the stupidest name ever, and is misleading because not every baby that needs a helmet needs it because their head is flat from always laying on their back. (*steps off soapbox*)

So last Monday evening as I sat looking at my sweet, healthy, and (so far) typically developing 5 month old baby, I was struck hard by how different her life is (and consequently mine) than Raya's was at 5 months. Or ever. I couldn't stop the tears from flowing as I thought about the contrast between the two girls. I suppose in a way, they were tears of grief over the acknowledgement that Raya's life has never been normal or easy. As hard as we have tried to make things as normal as possible for her, there is no way to erase the pain and suffering she has been through. I don't remember ever being able to look at her when she was 5 months old and just be at peace because she was so happy, content, comfortable, etc. like Piper is. Raya was not any of those things at 5 months. The reason she had her first MRI at 5 months was because she was so tense all of the time and never, ever relaxed. Her GI doctor had started to suspect that her demeanor had more to it than just gastrointestinal discomfort and referred her to a neurologist to start more testing. She vomited a lot, and when there was nothing left to vomit, she dry heaved. I had never ever seen a baby vomit and retch like Raya did, and she did it all the time.

As happy as I am that Piper's life is not even a shadow of what Raya's was like, seeing her doing so well serves as a painful reminder that Raya did not have that experience as a baby. She was happy despite the miserable times:


 but she spent more time feeling awful than any baby should ever have to spend.


We are getting close to Piper starting solid food. It will be another month or two, maybe more, but it's coming. In the last month or two, she has really started to get excited about her bottles. Because of her feeding difficulties, I am still pumping and feeding her breastmilk from a bottle, which has been a very healing act for me. It was devastating to me when I was told that I had to stop giving Raya breastmilk, but I could see that it was making her sick and she wasn't growing, and I knew it had to be done. Finding a sweet little adopted baby to donate the 3 gallons of breastmilk I had in my freezer to was a step in healing that hurt, but seeing Piper grow and thrive on breastmilk has been amazing for me. It has helped me regain some of the confidence in myself as a mother that was taken away when I couldn't keep Raya alive without medical intervention anymore.

I don't know what it will be like for me when Piper starts eating. So far, the way she has reacted to being given licks of popsicles and tastes of lemon water has inspired confidence that it will go well when we do start feeding her. I've never seen a baby her age get so excited about a popsicle, but she loves them. It will be hard for me to not micromanage every calorie that goes into her mouth. I imagine there will be some tender moments when I remember how frustrating and painful it was to try and get Raya to eat solid food. And messy. It was very messy.

 But it will also be sweet and beautiful and amazing, no matter how messy it gets. It has been 9 years since I fed a baby that grew at a healthy rate and didn't have issues with food, so the prospect of Piper being happy about eating is something that I am cautiously optimistic about and trying to look forward to.

It's hard to put into words why a healthy baby makes me sad, but I think this is what it boils down to. Piper has never seen the inside of the children's hospital. She has never slept in a metal crib with safety rails. She has never had vial after vial of blood taken from an IV in her head, has never had an x-ray or upper GI, has never been pinned down over and over again while her mother ran a tube through her nose and into her stomach, has never tasted formula, has never vomited so violently that she passed out after the retching stopped, has never tasted barium, has never had 7 medical appointments in one week, has only ever seen one doctor since she came home from the hospital, and has never been poked over and over and over again by nurses who are trying their best to get a needle into tiny dehydrated veins. The fact that I am acutely aware of all the experiences she has not had means that Raya HAS done all of those things, and I was right there with her during all of it. That is why I can simultaneously be happy and mourn when I watch Piper experience babyhood at its most normal. I am happy that Piper is doing so well and has never experienced any of those things, but I am sad for Raya that babyhood was so hard for her and that the relationship she and I had included so many unpleasantries, like the 62 times that I pinned her down and put her NG tube back in or all the times I held her down while she got labs drawn or IVs placed. Most of the time, the sadness sits on a shelf and I am aware that it's there, but it stays out of my way. There are moments though, where it comes out of nowhere and all I can do is allow myself to let it be what it is.

All that said, I am so very grateful to not be going through what we went through with Raya all over again. It is a beautiful blessing to have Piper in our family, and she has been a source of peace and healing to all of us.

Monday, July 21, 2014

Slowly moving forward

We are coming up on 2 weeks of Raya having her GJ tube, and she is definitely making progress in some areas. First and foremost, she is back to her normal sleep schedule, meaning she is responding appropriately to her sleep meds again. HUGE sigh of relief there. I am happy/comfortable with the med we've been using and really didn't want to make any changes there, so I'm relieved that we don't have to now.

She is making some progress with her GI issues too. She seems to be more comfortable overall. It's kind of hard to explain how I know that, but I'll try. Raya does not express pain or discomfort verbally most of the time. It is rare for her to do that unless she's really feeling awful and I ask her several times and rephrase the question multiple ways. During the day, if she isn't feeling well, she gets more and more alert and hyperactive. Her highs are really high and she has a lot of ups & downs in her activity level and mood. She is unable to hold still for more than a couple of seconds (no exaggeration) and you can tell her mind is going a hundred miles a minute. You can ask her to do 2 or 3 things in sequence and she will get distracted, sometimes before she even does the first thing, and will forget everything else she was asked to do. In the weeks leading up to when we changed her to the GJ, all of this got worse and worse. The times when we were having trouble with her feeding pump not running as fast as it was programmed to run (especially the day it ran for 7 hours with the tube clamped & didn't feed her at all), she was noticeably calmer and happier. It has always been that way for her, which is why I don't believe that a hunger-based tube wean will ever work for her. You can go for an entire day without feeding her at all and she couldn't care less.

If we tried to increase her feed rate above 75, it seemed like it was going okay at first and then we would realize that her body was overwhelmed by the increase and the only way she was able to express that was through her restlessness, increased activity level, and moodiness. I think a good way to describe it is like having ants in her pants. She was constantly moving because if she slowed down, she could feel the discomfort in her gut. When I was pregnant with Piper, there were nights when I could not sleep because my digestive tract felt tickly. If I held still, it tickled. The only way I could stop feeling the tickly feeling was to move. I imagine it is a similar feeling to restless leg syndrome, but in your gut instead of your legs. It was aggravating, to say the least. I imagine that might be why she is the way she is when she's not feeling well.


In the last few days since she started sleeping again, she is just more calm overall. We have slowly been increasing her feed rate, and she is already up to 90ml/hour with no ill effects from it. That has decreased her time on the pump from almost 17 hours a day to just under 14 hours. 3 hours may not seem like all that much but it's HUGE for a very busy 4 year old who likes to do somersaults and dance without a backpack weighing her down. It's hard to describe the change in her demeanor, but it is a positive change and I am confident that switching her back to a GJ tube was a good thing for her. As her respite provider put it today, her highs are not as high and she's just more even-keeled. She's not as up and down as she had been before. It's more like 5-5:30 in the evening when I find myself subconsciously counting down until bedtime instead of 4:00. (ha ha) She is still a very busy girl with a very, very short attention span, but I just feel like she is more comfortable now and is feeling better in general.

Based on Raya's first experience with switching to a GJ, I assumed that it would take her body some time to adjust to being fed so differently. Instead of entering her digestive tract at her stomach, her formula is now entering somewhere in the neighborhood of 30-45cm below her stomach in her jejunum. That takes some adjusting, for sure. I also assumed that she would need some time and some help in recognizing the difference between bad stomach pain and the feelings of intense hunger. Sometimes I have trouble distinguishing between those feelings, so I can only try to imagine how confusing and difficult it would be for a 4 year old child who has never in her life had much normalcy in the way of eating/food/digestion to try and understand. It is going to take us some time to work with her and teach her to figure out what her body is trying to tell her. It will be another mountain for her to climb but I think she is going to do well with it. IF her stomach cooperates. That's the big "if". Gastroparesis/dysmotility really stinks.

I had hoped that she'd be eating more food by now, but like I said, she has a lot to learn still about how eating food helps the pain of intense hunger go away. She is asking for food again, and she has been eating a pretty decent amount of refried beans at a time (as much as 3-4 tablespoons) but she usually just takes a bite or two and then doesn't want anymore. She tells me that it's hard to swallow things, and after a couple of bites, she says her stomach is starting to feel full. It's hard for me to know how to interpret all of what she's telling me, but we're working on it. For now, we're just focusing on the positives, like the fact that when school starts in a couple weeks, she'll be able to go to school without her backpack on. I am SO excited about that and I'm sure that her teacher & the health aide will be too. I think it will be a lot less stressful for them that way.

On another note, so far, I really like the AMT G-Jet. We had the MIC-KEY GJ for about 10 months, and there is a lot that I prefer about the G-Jet so far. That is another post for another day though. :)

So there's the first post-GJ update on how things are going since the switch. Hopefully things will continue to move in the right direction for us.

Friday, July 18, 2014

Who needs sleep anyway??

Apparently not Raya. At least her brain doesn't seem to think so. It hasn't for about 2 1/2 years now. This will be one of those posts that's a little uncomfortable for me to share, but I feel like it's an opportunity to help people understand what it's like to have a child who has significant sleep difficulties. We're not just talking about a kid that fights bedtime. All kids at some point protest having to go to bed, and yes, that is difficult to deal with too. This is not at all what we're dealing with though, so hopefully this post will help explain the difference.

I don't remember exactly when Raya's sleep problems started. She had started sleeping through the night pretty early on. In the beginning, we actually had to wake her up every couple of hours overnight to try (usually not very successfully) to get her to eat. One of the best parts of having the NG tube was that I could just let her sleep and feed her through the tube instead of waking her up and trying to get her to drink a bottle that I knew she wouldn't drink. When her vomiting got worse, she became like clockwork. She always ALWAYS woke up between 10 and 11 at night to vomit. If her stomach happened to be empty (which was rare), she would still wake up and retch (dry heave) for a few minutes. She also always woke up between 5:30 and 7 in the morning to vomit. I started calling her my little vomiting alarm clock because that was what I woke up to every single morning. You think alarm clocks get your heart pumping? Try waking up to the sound of your child vomiting every single morning.

Aside from that, she slept pretty well. Even after the vomiting stopped though, she still continued to wake up between 10 and midnight most nights. As she passed the age of 2, it gradually got more difficult to get her to go to sleep at night. We started trying things like melatonin, lavender, getting her transitioned off of night feeds, and a couple of different sensory routines that her OT developed for us. The melatonin never did anything for her at all. What most people don't understand about melatonin is that if your body is not deficient in its natural production of melatonin, taking more melatonin will not help you sleep. All it does is help to regulate your body's sleep-wake cycle, so if you already have enough melatonin in your body, more will not do anything for you. That was the case for Raya. The lavender and sensory routines helped for a while but gradually stopped doing anything for her.

About 6 weeks before her 3rd birthday, we moved. It was only about 6 miles, but it completely threw her body for a loop. Her motility tanked, her sensory issues went through the roof, and she was just a mess. None of that helped her sleep difficulties. Right after she turned 3, she started preschool, aka a petrie dish in the form of a classroom full of 3-5 year olds, during cold & flu season. Within the first couple weeks, she caught her first of many, many preschool colds. The increasing lack of sleep that she was experiencing made it difficult for her immune system to fight off all the germs that are in a preschool classroom, and we started to get concerned about the possibility of severe GI complications that could result from the illnesses she was picking up at school. A couple weeks after she turned 3, we went to a developmental pediatrician who helped me to realize that much of what we were seeing with her was the result of anxiety. She suggested asking Raya's care team about letting us try a medication called atarax to help her relax in the evening and hopefully be able to fall asleep.

A week later, she had surgery. In pre-op, she was given a dose of oral versed through her G tube to help chill her out while they got her into the OR and put her under. She had what is called a paradoxical reaction, meaning that instead of making her calm and relaxed, she became combative and agitated. She was like a 30 pound angry wet noodle. I don't know what happened once they went through the doors to the OR, but when the anesthesiologist came to talk to me, he told me that she should not ever have versed again. Like, ever. Because of her reaction and because of her history of waking up from anesthesia like an angry wild animal, he gave her a med called clonidine to help her come out of it more calmly. It worked BEAUTIFULLY. She slept peacefully for 2 hours in PACU and woke up calmly and as sweet as ever.

A few days later, she had a follow-up with her neurologist. After discussing everything that was going on, she decided that rather than try atarax, we would just try clonidine since it had helped after her surgery. Since the first dose, clonidine has been a miracle and a godsend for her/us. I remember sitting on the couch with her the night we gave her the first dose and just watching in amazement as she peacefully drifted off to sleep less than an hour after we gave it to her. I may have actually done a happy dance.

Although she is able to go to sleep with the clonidine, she does not always STAY asleep all night. Most nights, she still wakes up about 4 hours after she gets the dose. Incidentally, it usually happens between 10 and 11 pm. Last time we saw neuro, she said clonidine only works for about 4 hours so we now are able to do a smaller second dose if we need to later on at night.

Last Wednesday for her GJ tube placement, we used a dose of clonidine to help her relax for the procedure since I am not allowed into the radiology suite while they place the tube. It did its job and put her to sleep, but she woke up as soon as they put her on the table and tried to touch her G tube. We ended up opting to do anesthesia so that we could get the tube in without traumatizing her. For whatever reason, when I gave her the clonidine that night at the normal time, it did not make her go to sleep. It didn't work the next night either. Or the next night. By Monday night, I was starting to panic a little. She was waking up groggy and exhausted in the morning, falling asleep in the afternoons, and then couldn't go to sleep at night. On Tuesday, I decided that I would not give it to her that night, thinking that maybe it would reset her body and allow her to start responding to it the way she was supposed to again. I figured we didn't have anything to lose by trying it and decided that if it didn't work, I would call her neurologist and see what else we could do.

Tuesday was a busy day. Again, she woke up groggy and was telling me all morning how tired she was. We got in the car and went to OT and feeding therapy, and then had 90 minutes to kill before her GI appointment. We drove home, and both girls fell asleep. I threw together a quick sandwich and got back in the car to drive back to the same part of town for the GI appointment. Raya woke up enough to walk into the clinic, but since we were pretty early, we sat in the waiting room for a while and she fell asleep.

The nurse came out and chatted with me for a while until the medical assistant came to take us back to a room. I carried Raya and the nurse pushed Piper in the stroller. I love going to that office. :) For GI appointments, the weight checks are done with nothing on but a hospital gown so it was super fun convincing a half-awake kid to let me change her clothes. She was SO sleepy!

The GI visit went fine. Nothing exciting to report since we were still too close to the GJ change to be able to tell if we were seeing positive changes or not. She hasn't gained an ounce in 6 or 8 weeks again, so we're going back for another weight check next week and if she hasn't gained, we'll up her calories again. Hopefully we won't have to because that would set us back on increasing her feed rate to decrease her time on the pump, but if we must, we must.

After GI, we went home and did all the usual evening stuff. I sent all the kids to bed around the usual time, and at first it seemed like she was going to fall asleep, but just a little later than normal. Ha ha. It was wishful thinking. Bedtime at our house is 7:00 during the school year and between 7 and 8 during the summer. Here's Raya at 9:15:
And let's pause for a moment to appreciate the irony of the minion card she's holding. Ever since we saw Despicable Me 2 at the summer movies a few weeks ago, the feeding pump sounds like minions to me. "BEE-dow, BEE-dow, BEE-dow..." It's slightly less obnoxious when you think of it that way.

I kept waiting for her to at least show signs of slowing down but it never happened. Then Piper woke up, which is rare, so she joined us in the living room. And puked all over my pillow while I was holding her after she drank her bottle. Thanks, kid.

And here she is shortly after 11:

Piper fell asleep on a blanket on the floor so I let her stay there. The last I remember looking at the clock, it was about 11:45. I woke up briefly at 1:00 and couldn't believe she was still awake, but she was finally playing quietly so I just went back to sleep. At 3:30, I woke up because she turned on another episode of "Deadliest Catch" on Netflix. At that point, I needed to get up and pump anyway (yeah, still doing that) so I put Piper in bed and got everything I needed. Raya sat next to me on the couch (more like bounced around on the couch) while I pumped and we watched Deadliest Catch. She was chattering away about fishing and boats and the toys she was playing with, etc. and still showed no signs of slowing down. At 3:45 am, I finally caved and decided that for better or for worse, it was time to give her the clonidine. This is the picture I took of her at 3:45 am:

See what I mean? This is not the same as a kid that just throws a fit about going to bed. Her body and mind just could not slow down enough for her to be able to go to sleep. If it was something that melatonin, essential oils, and sensory routines could fix, we would do those things. We HAVE done them. Unfortunately, they just don't do enough for her, and there is nothing normal or okay about a child who can literally stay awake all night long. This is why the prospect of her clonidine suddenly not working for her anymore was enough to send me into a bit of a panic.

At 4:30am, we were both still awake. I couldn't keep my eyes open anymore though, so I laid back down on the couch and went back to sleep. I don't know what time she went to sleep but I think it was shortly after I did. I woke up again at 7:30 to take care of Piper and make sure everybody was eating breakfast & doing their morning tasks. Raya was awake again at 8:20, but then fell asleep again for another hour until it was time to start getting ready to go swimming.

I wore her out on Wednesday the best I could, and didn't let her nap. We didn't go anywhere in the car because I knew that would have put her to sleep in a heartbeat. On the advice of the GI doctor, we gave her the dose of clonidine an hour earlier than normal that night and crossed our fingers. It took about 2 1/2 hours, but she finally fell asleep and slept more than she had in a week. (still came in our room and was awake for probably an hour or so in the middle of the night but better than the rest of the week) She woke up yesterday morning feeling refreshed and happy instead of groggy and tired.

Last night, we gave her dose at the normal time and she fell asleep within the normal time frame. I am breathing a huge sigh of relief and crossing my fingers that this is just a fluke and we won't have this problem every time she has to do anesthesia.
She is beautiful when she's awake, but she's a whole other kind of beautiful when she's peacefully sleeping. Especially after seeing how run down and exhausted she got after a week of having her sleep so thrown off. I hate that she needs medicine to help her sleep, but I am so very thankful that we have that option, for her sake and for my sanity's sake.



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