*ALL information on this website is the intellectual property of the blog/website owner! Unauthorized use is prohibited. If you see something you'd like to repost or share, please email me and ask first. This includes but is not limited to all text, information, and photos on the blog. Thank you!*


**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.**

Friday, October 31, 2014

Happy Halloween!

Tinkerbell is a little under the weather today. Enough so that she didn't go to school this morning and we had to reschedule her out-of-state motility testing that was supposed to be next week. Nobody wants to do anesthesia on a kid with a cough/upper respiratory infection. Baby sister isn't feeling good either. She has croup and was having a rough day Thursday so she's on an oral steroid that seems to be helping. (but baby 'roid rage isn't fun for anybody) Raya also has cellulitis on her arm again just like she did in July, so she's on another 10 day round of antibiotics for that. Blech. In spite of it all, we got everybody dressed up for Halloween and they all had fun trick-or-treating. In short sleeves. Halloween is one day that we especially love living in this very warm place. :)

Friday, October 24, 2014

NASPGHAN Conference

Mommy is on vacation. I haven't heard a feeding pump beep in 2 whole days. Do you know how long it's been since I went 2 days without hearing a feeding pump beep?! I don't. I miss my babies dearly (and my wonderful husband who isn't scared to be left home alone with 5 kids for 3 days) BUT I am where I need to be right now.

I had never heard of NASPGHAN until my Feeding Tube Awareness colleague, Traci, mentioned that she would be going to their conference in Atlanta. NASPGHAN=North American Society of Pediatric Gastroenterology, Hepatology, and Nutrition, by the way. We (FTA) deal primarily with the pediatric tube feeding population, so this conference is really the perfect opportunity to share our organization's purpose with the right demographic. We flew in early Thursday morning and have spent several hours in the last 2 days in our booth at the exhibit hall talking to hundreds of GI doctors, nurses, and dietitians. The response to FTA has been extremely positive. These clinicians want to do right by their patients. They are excited to see the resource that we have become for parents who need the kind of support that can only come from others who have been where they are. The Parent Guide that we released earlier this year has been very well received by the people we have talked to. I have also been talking with the reps from many of the companies that manufacture the products that all of us use to feed our children. They are also interested in hearing feedback from the people who use their products on a daily basis and they want to make things better for our children. I know that tube feeding feels lonely and can be discouraging. REALLY. I know it because I have lived it. What I have learned through my experiences working for FTA and talking with all of the providers and company reps that we have talked to is that they ARE listening, and they DO want good outcomes for the patients they serve! It doesn't always feel that way and the process can be very slow, but if we as parents and caregivers will be patient and persistent, we CAN help bring about positive changes that will impact the lives of the children we love so dearly and work so hard to take good care of. I was surprised and excited to see Raya's GI nurse in the exhibit hall today. I guess I have not done a very good job of explaining FTA to our local GI clinic because she had no idea that it existed or that I was involved in anything like this. It may sound silly but I am really enjoying what I am doing with FTA. I love the mission we have to spread positive awareness of tube feeding, and to help educate parents about tube feeding, as well as to help clinicians understand the challenges their patients will encounter with tube feeding in a home environment. I am so thankful to be involved in FTA and also extremely grateful for a husband that supports me in all of this. We have one more day at the conference and I'm looking forward to it!

Wednesday, October 22, 2014

Back to a G

This whole GJ thing just did NOT turn out like we had hoped it would. In the wee hours of the morning last Friday, I woke up to turn off Raya's pump and saw this:
A quick whiff confirmed my suspicions that there was formula in that bag, not just bile. (yep, I sniffed it. what else can you do.) I emailed the GI nurse at about 4:00 in the morning to let her know what was happening and ask what they wanted me to do and then went back to sleep. As I was getting Raya buckled into her car seat to go to school that morning, I saw this:
And that, my friends, is formula going into the J and coming right back out the G. That meant that her J was completely displaced and had coiled all the way back into her stomach. That explained why she had been feeling so crappy Thursday but it was a HUGE disappointment. When she had the GJ when she was younger, we went nearly 10 months without ever having a J dislodge, and now she's had 3 in less than a month. It is discouraging, especially knowing that the GJ gave her 2 really great weeks where she felt really good, slept well, and ate more orally.

The GI nurse called me back as I was walking out of school after dropping her off, and after discussing things, she said it would be best if we just took out the GJ and put in a regular G tube until we go to LA, and then reevaluate at that point to see where we should go. We both agreed that we don't want to put Raya through the anesthesia and radiation exposure of another tube placement, especially since she will be having anesthesia again and more radiation exposure in LA with the testing they're doing. Going back to a G tube is a bummer because it means slow feed rate and needing to be plugged in at school, but since the last GJ was causing SO much bile to back up into her stomach and need to be drained, so adding in the slower feed rate for feeling crappy plus the large volume of additional fluid to make up for the amount she was losing meant upwards of 20 hours a day on the pump. OPPOSITE of what we were going for with the GJ.

When I picked Raya up from school, I told her that Nurse Marie said we needed to take out her GJ tube since it was out of her intestine, and put in a regular G tube. (she's old enough now that I talk to her about it in pretty much the same way I would talk to another adult about it.) I told her we could do it right then or we could wait until the big kids got home from school if she would rather wait. We decided to just go ahead and do it, so I got everything ready. Then she stonewalled me.
It's kind of tough to change a tube like that. I did finally get her to turn around and lay down for me. One of the other reasons I wasn't totally sad about losing this GJ is that it was too small. They had put in a 1.5cm instead of a 1.7cm (miscommunication between the 2 tube changes) so even though I had let some of the water out, it was still putting too much pressure on her stoma and making it red and sore and goopy. One of my greatest tube feeding pet peeves is a goopy stoma. We normally keep gauze on it to keep any leakage from sticking to her skin since it's very irritating to skin, but this tube was tight enough that putting gauze around it made it even tighter. It's a little crusty and gross looking in these 2 pictures but you can see how the tube being too small has affected her stoma.It is red and irritated, and in the second picture, you can see a red spot near the balloon port that stayed red and irritated like that pretty much the whole time the tube was there.
I know it looks like she has granulation tissue but it's just scar tissue that's a little angry.

Raya wasn't too thrilled about having to change her tube but knowing that the alternative was having it changed at the hospital again, she held still and let me take the very long GJ tube out. I can't even imagine how weird that must feel to have 40 cm of tubing coiled up in your stomach.
She is such a goofball! Sooooooo it's out. And I lied, there may be a titch of granulation tissue in there, but only on the inner ring. The outer edges are scar tissue.
So now we have just a G tube again.
I had really hoped that the 3rd GJ would hold out until we go to LA in a couple weeks but it didn't. Boo. On the bright side, the 3rd GJ was also causing a lot of problems and making her feel crappy, so it's not entirely a bad thing that it's out. So far, G feeds are going okay. Just okay, not great but not terrible either. The worst part right now is that we are back to about 18 hours a day on the pump. Turning the pump on still makes her stomach hurt. Giving meds still makes her stomach hurt. Eating still makes her stomach hurt. She keeps asking for a Farrell bag since that was what we used to vent/drain her stomach with the GJ when she felt yucky, but we can't do that now since her formula and meds are all going in her stomach again.

Funny story about that Farrell bag. So I will be honest, I am not a very good housekeeper. My house is at my comfort level but is not magazine-worthy. Sometimes a drainage bag will sit on the counter for a day or two before it gets thrown out. (it sounds so much worse in writing) There was all kinds of chaos going on when I unplugged the Farrell bag from her stomach Friday morning (i.e. school/IEP drama, getting kids off to school, and being upset about another failed GJ tube) so I put the bag on the counter and kind of forgot about it. Saturday morning, I walked into the kitchen and saw this:
Turns out if there's formula in the Farrell bag WITH the bile, all kinds of crazy stuff goes on inside the bag and it ends up really puffy. It probably wouldn't have exploded but I felt like it was on the verge. I didn't want to just toss it in the garbage like that because I was afraid it would keep fermenting (or whatever it was doing) and end up popping, so I decided to very carefully let some of the air out. I held the tip over the sink drain and unclamped the clamps, and then squeezed the air out. I knew it would smell bad but it didn't smell like I expected it to. I was expecting more of a vomit smell but it was most definitely a really bad fart smell. So now we know that formula without bile smells like vomit, and formula with bile smells like a fart. Who needs science class. And that is my gross feeding tube-related story of the day.

Thursday, October 16, 2014

Why I haven't posted anything this week

1. busy filing a claim with secondary insurance from an urgent care visit over the summer at an urgent care where her primary insurance is not accepted but secondary is, but since primary insurance denied the claim, they refused to bill secondary so now I'm having to do it for them and hope that the secondary insurance takes me seriously since nobody there seemed to think it was kosher for a patient to file a claim

2. trying to convince school district that October is too early to do a 3 year reevaluation (never mind that it's only been 2 years) for the kindergarten transition process, which, if she happened to not score within the qualifying range, she would be booted out of preschool as of Thanksgiving, and to convince them that we do not in fact HAVE to do said reevaluation prior to the IEP meeting that is due at the end of the month, and should actually do the IEP meeting first and wait until February or March to do the reevaluation

3. trying to stay on top of making sure the hospital in LA is sending prior auth requests, insurance companies are receiving prior auth requests and granting authorizations, figuring out how we're getting to LA, how many of us are going, where we'll stay if Ronald McDonald House doesn't have a room for us (which we will not know until we get there), flip-flopping back and forth about whether we're doing the right thing by doing motility testing again even though I know we need to do it, stressing about what to do with the other kids while we're gone even though a friend has already said they could stay with her and she'll get them off to school for us, and trying to picture how we will manage having Piper at the hospital with us but knowing that I can't bring myself to leave her home

4. I'm leaving a week from yesterday to go to the NASPGHAN conference to help run the booth for the Feeding Tube Awareness Foundation (which I'm VERY excited about!!), so I have to hurry and get all of my "in case I get hit by a bus" information compiled for Donny so he is up to date on everything that needs to be done with Raya and Piper while I'm gone for 3 days
*NASPGHAN=North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition

5. trying REALLY hard not to lose my milk supply (thank you, stress...)

6. still trying to get Raya some kind of counseling/behavioral health evaluation like the developmental pediatrician recommended to help her deal with her anxiety (which has gotten exponentially worse in the last month or so, thank you, hospital) and WISHING that the people at school could see what it's like to try and get her to function at all when she's stressed out or doesn't want to do something

7. trying not to panic over any of the above items or develop any new stress-related ulcers

8. Halloween is 2 weeks from tomorrow and nobody has costumes

9. Dinner?? Didn't I just feed you guys yesterday??

10. dealing with a little girl who has not felt good since her last GJ tube change and has the behavior and poor sleep habits to prove it (and I'm not talking about naughty kid behavior, I'm talking about the coping behaviors that help her deal with how her body is feeling)

11. prescription copay reimbursement forms that have been waiting to be filled out & mailed for a long time now, which is only necessary because the mail order pharmacy our primary insurance requires us to use refuses to bill her secondary insurance like they're supposed to, so we have to pay upfront and get reimbursed (not that I'm complaining about having such wonderful insurance coverage, it's just that I kind of have enough to do already)

12. trying to find a behavioral health provider that accepts both of her insurances so we can try to get her some counseling for her anxiety, which is proving to be absolutely maddening.

So yeah. I'm a little maxed out right now. I am feeling like I'm spread way too thin but there's not much I can do about it. I mailed off the insurance claim yesterday and have drafted an email for the school psychologist, but I can't send it until I have someone read it to make sure I have worded it effectively. (and can I just say that it really sucks to feel like you're walking on eggshells and if you make one wrong move or say one word wrong, your kid might end up getting kicked out of preschool)

And also I kind of feel like this:

Yeah. I just don't want to.

Monday, October 13, 2014

Fall break

Today was the last day of Fall Break for our kiddos. I know, I know, what the heck is fall break?? That's what I said too when I first moved to this state. Then once I had kids in school, I soon understood the value of having a week long (plus a day) break in October once the weather has cooled down to the low 90s. It's a beautiful thing.

I am not the most fun mom in the world. To be honest, I spent a lot of our fall break making phone calls to insurance companies, doctors' offices, and other providers. I also spent a lot of time on the computer and trying to catch up on things that I got behind on when we spent 2 impromptu days at the hospital the week before. There was a lot of housework that needed to be done, a couple of therapy appointments, and all of the kids had different things they needed to practice (i.e. piano, karate, etc.). Oh, and I spent a lot of time awake in the middle of the night too, for one reason or another. Mostly to connect a Farrell bag to a yucky, bile-filled stomach, or to make a pump stop beeping, and then I couldn't go back to sleep.

Wednesday afternoon, the kids all had appointments to get their teeth cleaned. The older 3 kids did fabulous, as always. No concerns with anybody's teeth. Then there was Raya. Remember how I said that medical trauma always has fallout that carries over into multiple aspects of her life? Yeah. It was her worst dental cleaning yet. Even her very first one when she was 2 went better than this. It was a CLASSIC case of how Raya copes with situations that make her uncomfortable. First, she distracts herself by finding toys to play with. If there aren't any toys, she uses her hands and pretends they're people and makes them walk, talk, etc. She completely tunes out the rest of the world. Then when someone does attempt to engage her, it takes several times talking to her to get her to listen. In this case, she ignored me because I was telling her it was her turn to lay on the little table to get her teeth cleaned. When she didn't show any intention to move towards the table, I moved towards her. She turned her back to me. I picked her up and carried her the whole 3 feet to the table and attempted to lay her on it, at which point she clung to me like a baby koala. I couldn't peel her off of me no matter how hard I tried or what I said to her.

When it quickly became clear that we would not be able to do a normal cleaning, I sat on a chair with her facing me and laid her back onto the hygienist's lap. She fought us on that too but she did eventually relax enough that we could do it. She squeezed my hands the whole time, made a lot of jerky/fidgety motions, made a lot of unhappy sounds, clamped her teeth shut on the toothbrush several times, and gagged a few times. The hygienist did the best she could but they're always afraid to do much when she's not feeling cooperative. I certainly understood why Raya was acting the way she was considering the crappy week she'd had the week before, but it was still really frustrating and disappointing to see her struggle so much with something as simple as getting her teeth cleaned. She has not been THAT orally defensive in probably over a year, and has never had as difficult a time with a teeth cleaning as she did this time. Last time, she was even able to have them use the regular spinning brush thing (dental terminology is not my thing) and she did bitewing x-rays like it was no big deal. From that to this was really sad to see.
This is the kind of thing that makes me worry about what will happen when she gets reevaluated for her IEP. Her fate is in the hands of the people doing the evaluations, and if they could only see how difficult even mundane, routine things can be for her when she is not feeling well, they wouldn't be trying to scare me by saying things like, "We'll do the reevaluation so we can determine IF she's still eligible for services." *deep breaths*

On a lighter note, the kids all had a lovely time with the fake mustaches they got from the little prize machine at the dentist's office.

We did go to a birthday party on Thursday morning at a park. It had been raining off & on the night before and that morning, so the temperature was perfect and it felt amazing outside. Raya wasn't feeling very good and spent a lot of time off by herself digging in the damp sand. Then she would come up to me and shake her hands at me over and over again but wouldn't say a word. She was trying to tell me (without talking) that she wanted the sand off of her. I'd get the sand off and she would say a quiet "thank you," hug my leg, and then go dig in the sand again and repeat the whole process. I just can't even fully put into words how different she is right now than her usual self.

Friday we decided to get out of the house and get together with some good friends at a park. Raya was feeling pretty good when we left so I only brought a stroller for Piper and figured on Raya walking. She started out fine.
I mean really, does it get any cuter than that? I think not. :) I didn't even tell them to hold hands. We sat in the shade at the picnic tables and had lunch, and then the kids ran off to play. Well, except for the tweenies. Ashtyn and her BFF, Sky, had their own little picnic off by themselves. They are just too cute.

It ended up being a bit warmer out than we had anticipated. The big kids played for a while but Raya didn't last very long. She had been playing but then a boy pushed her out of his way when she was trying to get on something and knocked her down. That hurt her feelings and she was already tired and hot, so she was just done after that. She came and laid her head down on my lap for a while and cried for a few minutes. Piper spent most of the time relaxing in the stroller and gnawing on a grape in her mesh feeder. Girlfriend loves her food!

When it was time to go, Raya cried and refused to walk. It was kind of a long walk to the car, so I didn't want to have any of the other kids carry Piper, there was a lot of uphill and downhill between the playground and the car so I didn't really want them pushing the stroller either. We ended up improvising and had Raya get in the stroller and squeezed Piper in next to her. Piper wasn't happy about it at first but once we started moving, she was fine. Raya did a good job holding onto her and didn't puke, and we all made it to the car just fine so I considered it a success.

Everybody was hot & tired but they had fun and at least now we can say we did something fun over fall break. :) We kind of laid low the rest of the weekend. I went to a craft activity at church most of the day on Saturday, and then in the evening, Donny and I went to the temple to see a family that we've known for several years be sealed together. It was a beautiful night and a sweet experience to be there with them.

Sunday was pretty rough. Instead of going to church at our regular location, we drove an hour to go to church with Donny's parents because his dad was being put in as the bishop. Suffice it to say that getting 7 people ready to leave for an entire day by 8:00 in the morning is a difficult task and I failed miserably. We were super rushed and everybody was crabby but we made it. Raya usually handles church just fine with no issues. She did fine for Sacrament meeting but once it was over, they had everyone that had come for the bishopric ordinations stay in the chapel while everyone else went to class. There were a lot of people there and the noise level got a bit higher. All of a sudden, it was just too much for my girl. She started acting funny, the way she does when she gets overloaded. Most people probably wouldn't even notice it, and it's hard to fully explain. She won't talk, she gets really stiff and rigid, she cringes a lot, and she just looks distressed. At one point, I had sat down on the bench to feed Piper a bottle, and Raya sat down next to me and tried to snuggle up with Piper's soft blanket. After a few minutes of trying to communicate without her talking, she got her point across that she wanted her blanket that had been left in the car, so Donny got it for her.
The rest of the time we were in the chapel, she curled up in the corner of the bench with her blanket over her head. She started to feel better once we left the church to go to Grandma & Grandpa's house for the afternoon. (from a sensory overload standpoint, anyway) Physically, she's still feeling yucky most of the time and we're getting a lot of this:
It was nice to have a break from our usual routine but we're all ready for school to be back in session.

Thursday, October 9, 2014

The continuing GJ tube saga

When Raya's GI and I talked in July about switching back to a GJ tube, I knew there was a possibility that we could run into some of the same problems we had when she had one before, but I really hoped we'd avoid most of them. We did at first. I was pleasantly surprised how simple the transition was in comparison to her first go-round with a GJ tube. {i.e. vomiting copious amounts of bile, 15 days in the hospital, weight loss, the need for constant draining of her stomach & IV fluids, 24 hour a day feeds, etc.} At my request (meaning I begged and pleaded), the interventional radiology (IR) doc agreed to place an AMT G-Jet instead of a MIC-KEY GJ like she had 4 years ago.

About 3 weeks into having the G-Jet, I accidentally clogged the G port when a piece of food she had eaten got stuck in the G port and then got impacted with the dose of her probiotics. After much trial and tribulation, I got the clog cleared. Bullet dodged. We did not have to replace it that time. About a month later, I noticed that it was getting harder and harder to push anything through the J port with a syringe. I thought the tube must have been gunky on the inside and figured that I was fighting against a partially clogged tube. I kept it working for a month, hoping to avoid another tube change so soon after the original placement, since she has to do general anesthesia for her GJ placements. When the J port broke the Friday before last, we had no choice but to change it. We were able to go in last Monday and get that taken care of.

I was afraid that the kink in the first one had somehow been our fault, so I took extra precautions to keep the new one from moving by taping the "foot" of it to her belly:

The next day, we went to OT, and Raya wasn't feeling too great so I had a Farrell bag plugged in to her G port to drain her stomach. During the OT session, what came out was the usual clear yellow bile. Right as we were finishing up though, I looked down just as a burst of cloudy liquid went into the bag. It looked like formula but I was hoping & praying that it wasn't.
The rest of the afternoon, I collected small samples of her stomach drainage and sniffed them to see if they smelled like formula, and they did. {and no, I never imagined that I'd someday be draining my child's stomach into a bag and sniffing them on purpose} I emailed the GI nurse to let her know that I thought the J tube may have been out of position and asked if we could get an x-ray to confirm correct placement but I didn't hear back from her on Tuesday. As the day went on, she progressively felt worse and worse. She had some retching episodes overnight. I gave her some over-the-counter anti-nausea medication through her J port, and within a minute or two, it was coming out into the Farrell bag, which told me that her J was definitely not in the right position. She and I spent a fitful night on the couch together but she felt better after a few hours off the pump that night.

I took Raya to school Wednesday morning and when she came home, I tried to flush the tube and give her the next doses of her meds. Nothing would go in or come out of the J port. Not even the tiniest little bit at all. After I cleaned the sticky medicine off of every surface in the kitchen, I called the GI nurse to let her know that there was something wrong with Raya's tube and that it had gotten worse to the point that I couldn't use the J at all. She said she'd call IR and send the order for a tube change over to them. In the mean time, I didn't want Raya to get dehydrated so I ran a mixture of formula & Pedialyte at a slow rate into her stomach and crossed my fingers that she would tolerate it. The IR department called me in the afternoon to ask if it needed to be changed that day or if we would be able to get by until Thursday morning. She said that if it was an emergency, they could squeeze us in at 5:30 or 6:00 that evening but we have had bad experiences with being squeezed in for things and I felt like Raya would probably be okay doing very slow G feeds, so I opted for Thursday morning. That also gave me time to make arrangements for the other kids.

Thursday morning, I told Raya that we had to go back to the hospital because her new tube was broken too. This picture pretty much sums up how she felt about that:
Not pleased. We hadn't even had a chance to get the adhesive residue off of her hand from Monday's IV yet. Since it was a crappy situation to have to go back again, I told her she could wear whatever she wanted to and bring toys to play with. She picked a long floral print tunic and a hot pink skirt that looked ridiculous with a long floral print tunic, and I let her. We also didn't bother doing anything with her hair, mostly because it took a huge amount of effort to get everybody out the door on time and we just didn't have the time to do anything exciting with it. She was still pretty quiet but was in much better spirits on the way to the hospital this time than she was on Monday. She played quietly with her toys in the waiting room and didn't seem to be having as much anxiety as she had on Monday.

Things were a lot easier on her this time. The procedure was done in IR instead of on the surgical floor because the flooding from the weekend had been cleaned up. That meant that we were back in the old part of the hospital so it was familiar territory for us, whether she consciously knew that or not. The highlight of her day was when the therapy dog came in to visit her while we waited for IR and anesthesia to come in and talk to us.
I am not much of a dog person but she was the sweetest dog. She let Raya brush her ears, which Raya loved. She also did some tricks for Raya and licked treats out of her hand. We also learned that she is exactly 4 days younger than Raya, so that was pretty neat too. She was a very welcome distraction! Someone from child life also came to talk to her about the mask for the anesthesia but she made it clear that she wasn't interested in talking to the lady and just watched Frozen instead.

We snuggled up under Piper's blankie while we waited. We had accidentally left Raya's blanket at home so I had to steal Piper's from her when we dropped her off at a friend's house. I felt bad but Raya needed it more. She also got another beanie baby. This one is a siamese cat named Snip. When it came time to go into the IR suite, she did start to get anxious.

Before the procedure, the IR doctor who had changed her tube on Monday came in to talk to me again. I had a lot of questions for him and was really unsure of which brand of tube to have him put in. He and I talked for a few minutes and I explained to him the reasons I was afraid to try another G-Jet, as well as the reasons I didn't want to go back to the MIC-KEY GJ. I mentioned the part about the ports wearing out quickly on the MIC-KEY and how it's difficult to keep the G port capped since the cap is one piece. When I mentioned that, one of the IR nurses piped up and gave me the helpful suggestion {insert sarcasm} of leaving an extension tube connected to it 24/7. I politely told him that we had done that when she was younger and that it greatly increases the risk of having the tube get caught on things, like the time that the tube got caught on a chair at the doctor's office and the entire G port ripped out of it. Dude, don't even try to tell me how to do this, mmmmmkay?

Anyway, after I laid it all out for the IR doctor, I told him that I really did not know what to do and asked him what he thought we should do as far as which kind of tube to put in. He didn't really know what to do either and said he would go consult with one of the other IR docs. They went ahead and took Raya into the room to get her put under anesthesia and sent me out to the waiting room. I kind of laughed at that point because nobody had said whether or not the doctor would come back out to talk to me before he got started so I thought they were just going to surprise me with whatever tube they decided to put in. They did come out after a few minutes though. I rehashed everything for the other IR doc and after a few minutes of discussion, he sent the first one back to go ahead with the tube change and stayed out in the waiting room talking with me for about 20 minutes. I asked a lot of questions and he explained a lot of things to me. I'm not sure that I agree with some of what he said but there's nothing I could do or say to change his mind and I do understand where he's coming from with what he said.

Here's the nitty gritty of what happened with Raya's tubes and why we ended up going back to the MIC-KEY GJ. If you don't like technical mumbo jumbo, skip the next couple paragraphs. The first problem is that the material that the J portion of the AMT G-Jet is made of is thinner and less rigid than the J portion of the MIC-KEY GJ. The second problem is that the positioning of Raya's G tube in relation to her pylorus creates pressure on the J portion of the tube. That, in combination with the more flexible tubing and Raya's high activity level, creates a bad environment for the GJ to try and stay in place and functional. What happened to the original GJ and the second GJ that was placed Monday was that the pressure exerted by the angle of her stoma in relation to her pylorus started to pull the J portion back towards her stomach from its position in her intestine. If you think of a garden hose, you can only bend it so far before it will crease an kink. That's exactly what happened to her tube. It got pulled back towards her stomach, which caused it to bend, and it bent until it creased. Before it creased completely, it had gotten close enough to her stomach that what was going into the J port was flowing backwards into her stomach along with a lot of bile.

So that was what caused the problem. The next issue is that our radiology always cuts the J portion of GJ tubes so that the tip of it rests at the junction of the duodenum and jejunum. The reason he gave me for that is because then the tip does not end up resting against the intestinal wall, which could cause a pressure ulcer and eventually a perforation of the bowel. He said that in 30 years, he has never had a perforation and feels that placing GJs differently than their current method with the tube being placed deeper into the intestine creates an unnecessary risk, which is why they always cut them. I had asked about placing the tube deeper to prevent it from retracting into the stomach, so that was his answer as to why they would not do that.

The next issue is the fact that 2 tubes in a row had bent and kinked on us. We had never had that problem in 10 months of having a MIC-KEY GJ. He said that it was the result of the thinner, less rigid material that the G-Jet's J portion was made out of. To combat that problem, when AMT released its 16fr version of the G-Jet, they added a metal coil to the J so that it cannot kink. Our radiologists refuse to use that tube because they cannot cut a J with a metal coil in it or it will most definitely cause a bowel perforation. That left us with a choice between taking another gamble on a G-Jet with no metal coil that we knew would most likely kink again, or going back to the MIC-KEY GJ that I had so many reasons not to like when she had it before. I begrudgingly conceded to the MIC-KEY, knowing that we were just trading one set of problems for another.

I did have a good, thorough conversation with him and I appreciated him taking the time to talk with me, even if it was not really what I wanted to hear. I felt like I had to wait forever for Raya to be done. This time, she was starting to wake up already when I came in so she had moved herself out of that awkward and ghastly looking post-anesthesia position and was resting comfortably.
She woke up a lot faster and was much more alert this time. I assume it was because they forgot to give her the IV zofran and decadron like they had on Monday. She wasn't nearly as groggy. When she woke up, she just wanted to get the *$(%# out of there. If she knew swear words, she would have said them. She was also NOT pleased to see that they had tried unsuccessfully to get an IV started in her left hand and had to go for her foot instead. Her right hand was still bruised from Monday's IV so they couldn't use that and I don't know why they couldn't get a vein in her left one. She was probably a little dehydrated from not being able to use her J tube and she's always a hard stick anyway. Thank goodness she was asleep when they tried to place it.

 Once I got her dressed, she was ready to go. There was a very sweet but very sick little girl in the next curtain over in PACU who was not coming out of her anesthesia very well and was vomiting a lot, and Raya didn't want to listen to it. She really wanted chips, so we went down to the cafeteria and I got her some Fritos. Of course she didn't feel like actually eating them so she just licked the salt off of a few of them while I talked to a mom that I've interacted with quite a bit on facebook but hadn't met in person yet.

I started her off after the procedure with just Pedialyte and continued with Pedialyte through the evening. On Friday morning she said she felt good so I started her out with full strength Neocate Jr at her usual rate of 100ml/hour. Before long, she was feeling uncomfortable and asked me to connect a Farrell bag to her G port to drain her stomach. The older kids got out of school early for parent-teacher conferences and Raya didn't have school that day. I had a meeting with Raya's school staff that morning (which we were almost late to because her respite provider was late and had to meet us at the school instead of coming to the house) and then in the afternoon, I had conferences with all 6 of the teachers for the older kids.

As the day went on, she started feeling worse. Due to the amount and color of the bile coming out of her stomach, I decided I would keep her with me at the conferences. As we sat outside one of the classrooms, I took her Farrell bag out of her backpack and was a bit shocked by what was in it. Within a few hours, she had drained 450ml of dark yellow bile from her stomach and was still complaining of belly pain. It had been a really long time since I had seen anything like that from her.

After parent-teacher conferences, I took her to a birthday party for her friends from church (twins). The kids were painting little wooden treasure boxes and when I looked over at her, I saw that her hands were shaky. She just looked like she didn't feel well. About 10 minutes later she and I were standing in the kitchen and I asked her for about the 10th time if she felt okay. I think she said something like, "I don't feel good." and then I could see the puke face coming. Conveniently, we were standing right next to the garbage can so I opened it and stuck her face over it so she didn't throw up on their kitchen floor. They are very sweet people and were totally understanding but it still feels pretty lousy to have your child vomit in someone else's garbage can during a birthday party. Thank goodness Raya's friends aren't old enough to notice things like that. She felt a little better after that so we stayed for the rest of the party, but then for the rest of the evening, she just laid around and didn't feel like doing much of anything. To reward the kids for their good grades, I let them each choose what they wanted to eat for dinner and then drove to 3 different restaurants to get everybody's take-out. Ashtyn picked a sandwich & salad, Cole & Kaida both wanted Panda, and of course Raya wanted Chick-fil-a fries & sauce. By the time I got home with all the food, Raya didn't want anything to do with hers. I made her sit at the table long enough to get a picture and then she was ready to lay down again.

 I added Pedialyte to her formula to help make up for the fluid she had lost from her stomach and continued to run her pump overnight. She drained an additional 150ml of bile overnight and woke up several times that night. On Saturday, she started out feeling better than she had the night before until I started her pump. We went to a few garage sales that morning and then came home and I got her feeds going. I slowed the rate from but kept her on full strength formula to start with. Throughout the day, as I would empty bile from the Farrell bag, I measured it and added an equal amount of Pedialyte to her pump bag like we used to do when she was younger. She had a few episodes of retching later on in the afternoon and evening on Saturday and I noticed that her urine output was lower than normal. I called the hospital and had them page the on call GI for me, and after discussing everything with her, she thought it would be best if I continued to focus on keeping her hydrated at home but said to bring her in if she stopped peeing. It was around that same time that Raya told me she thought she would feel better if I turned off her formula, so I switched her formula out for just Pedialyte and ran it at a rate of 65ml/hour. Saturday night was rough. She had several retching episodes overnight and some awful explosive diarrhea at about 4:00 in the morning. {did I mention that Donny was out of town all weekend?}

She continued to drain about 400ml of bile from her stomach on Sunday. She had a pretty rough morning and just wanted to lay on the couch, which is not normal for her. Her facial expression was very serious all morning (in between retching sessions) which is also not normal for her. She just felt awful.

By afternoon, she was starting to perk up and feel a little better. She took a shower and then spontaneously decided to lay down on her bed and take a nap. That has not happened in about 2 years. I didn't want her to go without calories for very long so I started mixing half formula and half Pedialyte that night and continued to feed her that way on Monday, at a rate of 75ml/hour, which she seemed to tolerate okay. I went back to full strength formula Tuesday but kept the rate at 75ml/hour, and it has gone okay. Not great, but okay. She still seems more tired than usual and every time I ask her how her stomach is feeling, she tells me it hurts. She hasn't drained as much bile the last few days, which is good, but she is still losing an average of 200ml/day of fluids, and added to the formula she has to get in order to hit her calorie goal, we are back to 20 hours a day on the pump. I don't think I need to explain how crappy that is.

The other unfortunate thing we've dealt with yesterday and today is granulation tissue and a gunky, sore stoma. She has not had granulation tissue since her scar tissue excision almost 2 years ago. Her stoma is normally clean, dry, and healthy. Since Thursday, it has been weepy, gunky, and sore. I blame it on having a tube that is too short. She really needed a 1.7cm tube for the MIC-KEY GJ, not a 1.5.
I know it doesn't look that gunky but that's because I'm really picky about keeping it clean. I cleaned the gunk off with a wet Q-tip and then put Calmoseptine ointment on it with a piece of gauze over it to soak up the leakage and keep it from irritating her skin, and keep the Calmoseptine from getting on her clothes.

I am not giving up on the GJ tube yet, but this last tube change has been really disappointing and disheartening. She had done so well with the G-Jet other than having it kink in her stomach (which is obviously a big problem) and it was great to finally see her feeling good, enjoying several hours a day off of the pump, and interested in eating again. Hopefully what we're seeing is just because her body needs more time to recover from the tube change and things will keep improving motility-wise. It is frustrating to go so far backwards again and heartbreaking to see her feeling so lousy.

The really sad part of all of this is the difference in her personality. We have seen time and time again that when she doesn't feel well GI-wise, her sensory issues get much worse. That has happened. What has also happened that I have not seen as much of before is that her ability to communicate has gotten much worse. She doesn't want to talk much, especially when something is bothering her. We were at a birthday party at a park this morning for one of her friends, and she never said a word to any of the other kids that were there. She went off by herself and dug in the sand the whole time. She would stop every so often, come over to where I was, and with a distressed look on her face, she would shake her hands at me to indicate that she wanted the sand off. Even though the party was outside, there were a lot of kids there and she just seemed overwhelmed. Most of what she did say to me was in 3-5 word phrases, like "Too many kids." and "Let's go." She did a lot of vague pointing and gesturing instead of talking. The kids all got their teeth cleaned yesterday and in the past, she's done great with that. Last time, she even let them use the polishing tool and do bitewing x-rays. Yesterday, she wouldn't even get on the table. I had to hold her on my lap and do a lot of begging, pleading, and bribing to get her to let the hygienist near her. It was by far the worst cleaning appointment she's ever had. They could barely even get a regular toothbrush in her mouth, and trying to get the fluoride on her teeth was a joke. She has lost all trust in medical people again and goodness knows how long it will take or what it will take to get that back again.

 Seeing this much regression is hard, and it is scary when I think about the possibility of her losing her IEP and going forward into kindergarten without the protection that an IEP offers. I mentioned that we had a meeting with her school on Friday. It was the first meeting in her kindergarten transition process, which completely caught me off guard since I didn't know we'd be starting that process so early on in the year. The thought of sending her to full day kindergarten at the school she will be going to makes me physically ill. It's not that there is anything wrong with the school or the staff, but I can't even put into words how it makes me feel to think about turning her over to ANYBODY for 7 hours a day. They have no idea what that will be like for her. It was mentioned at the meeting that they will be doing a re-evaluation this month since her IEP meeting is due next month, so the re-evaluation will determine whether she is still eligible for special education services or not. I'm sure it wasn't meant this way, but to my ears, that sounded like "The next meeting will be the one where we take away her IEP." There were other comments made like, "I hear she is a completely different child than she was when she started preschool." and "You know if she doesn't have an IEP she can still have a 504 plan for her medical needs."  I don't know if they are insinuating that they don't think she will continue to qualify or if those statements are just meant at face value, but they have no idea what it's like to be the parent that is hearing those things. They have no idea how terrifying it is for me to think of having to try and get people to understand Raya's needs and work with her in a way that works for her without the safeguards of an IEP. It bothers me to think of moving into kindergarten without an IEP for a few reasons, but mainly because none of us have any idea what deficits may present themselves when she starts actual elementary school. She has done great in preschool, but kindergarten is a whole new ballgame. She WILL continue to struggle with her medical challenges, and seeing what she has gone through in the past 10 days and the regression we've seen this week alone, it really scares me to think that she may have her IEP taken away and be left without the protection that it provides her. This may sound terrible, but I have found myself hoping today as I've seen her odd behaviors, that I hope they have a chance to see what she is like right now once fall break is over so that THIS Raya will be taken into consideration on the teacher's portion of the evaluation. If she's going to feel like crap, I hope she feels like crap when the speech teacher is doing her portion of the evaluation so that she refuses to communicate with her too. I just need them to see how hard it can be for Raya when she isn't feeling well, because that is just part of life for her. I don't ask for prayers often, but we could really use prayers that the school district does right by her and does not take away her IEP.

I really didn't mean to go off on that tangent but that's just another example of the collateral damage that can be done by something as seemingly simple as a tube change. I don't know what the next few weeks will hold for her, but I really hope the school district doesn't add to my already skyrocketing stress level, and that we can figure out something to help get Raya feeling better without having to lose the potential benefits of having the GJ tube.

Saturday, October 4, 2014

To see you be brave...

Six years ago this weekend, I did something that I had previously never imagined I'd be able to do. I ran the St. George Marathon in Utah. Honest to goodness, I did not truly believe that it was humanly possible for a person to run for 26.2 miles in a row until I crossed the finish line that day. In the 6 years since then, I have thought back on that marathon time and again as I have gone through other challenging life experiences.

This past Sunday, one of the lessons at church brought back vivid memories of my marathon experience. The lesson was based on a talk from the April 2014 LDS General Conference, titled "Bear Up Their Burdens with Ease" by David A Bednar. It's a great talk that I have read and re-read several times in the past few months. During the lesson, we discussed how drawing ourselves to Christ does not remove our burdens, but rather gives us the support that we need in order to bear what we are asked to bear.

As my thoughts drifted back to the marathon, I remembered vividly the daunting feeling of impending dread mixed with excited anticipation as my running partner and I huddled together in the dark at the starting line with the 7,000 other people that were running that day. Right at that moment, I did not want to be there. I wanted to be back at the hotel in the nice, warm, cozy bed where my husband and baby were sleeping peacefully.

As the race got underway, I found my rhythm and cruised along comfortably for a while amidst a sea of runners wearing makeshift garbage bag rain ponchos. {did I mention that it was raining?} The first half of the course was mostly uphill and the weather fluctuated as we plodded along, but it wasn't. There were bursts of heavy rain and times when it almost completely stopped. Coupled with the extra body heat generated by climbing a hill with a 250 foot increase in elevation over the course of 1 mile, I decided to shed the rest of my extra clothing. I thought I was making a good choice based on what I could see at that point. I paid dearly for that decision for the next several miles as the rain started to pick up again. I was soaked to the skin, freezing cold, sore, exhausted, hungry, thirsty, and miles from civilization. Every now and then, an ambulance or shuttle bus would drive by, carrying runners down the mountain into town for medical treatment. I knew that there were only 2 ways to end my misery. I could give up and take the ambulance back to the finish line, or I could keep running. No amount of praying, pleading, or bargaining with God could get me out of what I had gotten myself into. It was up to me.
That is a fake smile. And also, I picked those sopping wet gloves up off the side of the road because I was desperate.

I was not left completely to myself to fight my battle to the finish line though. There was support in many forms throughout the course. Every couple of miles, there were aid stations. Some had cups of warm water or Gatorade. Others had snacks, energy bars, and people who would rub Icy Hot on the fatiguing legs of runners. There were photographers taking pictures at certain points in the race, which is surprisingly inspirational. Nobody wants to look bad in a picture, after all. At each mile mark, there was a Port-A-Potty with a mile marker sign on it. There were spectators at various locations along the course. They held encouraging signs, clapped, and cheered for everyone that ran past. There were more signs, some funny and some inspirational, all along the race course as well. None of these people could take my burden away from me. Running the race was my cross to bear, if you will. What they COULD do was be there for me when I needed support.

Parallels to marathon running can be drawn to so many situations in life. Running a marathon (including the months of training leading up to it) was hands down the most physically difficult and demanding thing I have ever put myself through. (although growing and birthing 5 babies is at the top of that list too) What has been on my mind in light of what has been happening with Raya recently is the parallels between running a marathon and Raya's chronic medical challenges. The lesson in church on Sunday helped me to connect the dots between those things. I had the distinct impression that Raya is in the throes of a figurative marathon, and my role now is to be one of her supporters. To be there with the figurative cup of warm Gatorade. I can't do any of this for her, and as all parents do, I have had to come to terms with that. I wouldn't necessarily say that I wish I could take all of it away, because she would not be the same child if we did, but I do wish I could somehow save her from some of the worst parts of it.

Thinking back to my marathon, one of my most vivid memories happened on mile 19. If I had to choose one word to describe mile 19, it would be despair. Complete and utter despair. With 7,500 runners in the race, there had always been other runners around me, but somehow I ended up completely alone for a stretch during mile 19. The rain had picked up again and the road curved so that I was headed into the wind. My legs were numb but ached, and I could feel the blisters forming on my feet. I was soaked to the skin from head to toe, even through my shoes and socks. All of my skin that wasn't covered by my spandex shorts and sleeveless shirt was bright red from the cold and the rain. I have never been so cold and miserable in my life. I felt like I had been running forever. There are no words to describe how badly I wanted to be out of that situation immediately, but there was nothing I could do about it. I had no choice but to keep going.

And so it goes with Raya. There is nothing she can do but keep on living in the body she was given. At times, everything runs so smoothly that she almost seems like a typical almost 5 year old. Other times, like her "mile 19," we wonder how in the world we will ever get her past this. Two times this week, Raya had to go under general anesthesia to have her unusable GJ tube changed. Two times, I dragged her away from all the things she would rather have been doing, dropped her baby sister off at a friend's house, and drove her to the hospital. Two times, she didn't want to be there. Two times, anxiety upset her stomach and we had to drain it into a bag so that she didn't vomit what was backing up into it from her intestine while she waited to take her "hospital nap." Two times, she wanted nothing more than to be out of that situation immediately, but there was nothing she could do about it. She wanted to go home, but she had no choice but to submit to what needed to be done.

Raya loves to sing along to the radio. It's amazing to me how quickly she learns song lyrics. That's not always a good thing, but there is one song that I love to hear her sing. Over the past couple of months as we have really started to focus on helping her to find the words she needs to express herself when she is upset, scared, frustrated, or not feeling well, the lyrics of this song have taken on new meaning to me. The song is called "Brave" by Sara Bareilles.

"Say what you wanna say
And let the words fall out 
Honestly I wanna see you be brave
With what you wanna say 
And let the words fall out
Honestly I wanna see you be brave"

We heard it in the car on the way to the hospital Monday morning. As I sat next to her and watched her struggle with the fear she was feeling, that part of the song ran through my head. It makes me so proud to see her suck it up and handle the things she has to handle, but I wish so much that I didn't have to make her do all of these hard things. I wish that she didn't HAVE to be so brave. One of the hardest parts of being in a children's hospital is watching as these innocent little kids are asked over and over again to be brave while scary, painful things happen to them. Hold still while we poke you with needles. Let us stick this camera up your nose and into your throat. Don't move while we strap you down so you can be scanned or x-rayed. We're going to teach your mom how to pin you down and put a tube in your nose so she can do it to you at home instead of bringing you to the hospital if it comes out. Let us take you in a cold and scary room where your parents aren't allowed to go and put you under a giant machine and then hold still while we thread a new feeding tube through the hole in your stomach and into your intestine. So yes, I want to see her be brave, even though I wish she didn't have to be. I want her to be able to handle all of those "mile 19" moments that she can't get out of with all of the grace and dignity that a 4 year old can muster.

Thankfully, even the crap of life has its funny moments. In the midst of the misery during mile 19, right as I felt like I just couldn't do it anymore, the Pink Floyd song "Comfortably Numb" came on my mp3 player. I didn't know whether to laugh or cry and so I did both. Thanks to the cruel irony of my fingers being too cold and numb to push the "skip" button, I was forced to listen to the entire song on rain-damaged ear buds. I couldn't help but laugh.

Raya's journey has been peppered with moments of hilarity as well. Thursday evening as I got ready to give Raya her evening doses of her medications, I asked her to pull her shirt up so I could connect the extension to her J port. I didn't realize that she had not seen her new tube yet and did not know that she no longer had a G-Jet, but rather a MicKey GJ. They perform the same function, but they look very different:

I wish to the high heavens that I had her reaction on video when she saw the new tube for the first time. It went something like this:

Raya: *shocked face* What tube is THAT?! *sigh* I wish I still had a GJ tube.
Me: This is a GJ tube too, it's just a MicKey GJ instead of a G-Jet. This port is the G and this one is the J.
Raya: Ugh, I HATE this tube! I don't LIKE it with the G over there and the J over there! How is THAT even supposed to work?!
(I opened the one-piece cap that covers both ports and connected the extension to the J port)
Raya: And Mommy, why is the G like that? {meaning why isn't there a separate cap on the G port} That's just silly. How is it supposed to be open like that? *sigh* I hate this tube.

I could not help but laugh! Everything she said about the new tube was exactly the way I felt about it! She went on and on with her little rant, and I decided that next time I have a discussion with the interventional radiology docs about which kind she needs, I will just let her explain to them why she doesn't want a MicKey GJ!

None of this is what I had pictured when I was holding my sweet little newborn Raya.
She has a good life, but it is hard for her in ways I never could have imagined back then. Sometimes things don't turn out the way you think they will or the way you want them to.

During my marathon training, when I pictured what my glorious, triumphant finish line picture was going to look like, this was certainly not what it looked like in my head:
And I may have shed a tear or two about that too, but it was still an incredible experience that I wouldn't trade for anything. If I could go back and change any part of that day, I would choose not to, because the outcome would not have felt the same. Not even my ridiculous finish line picture. (did you notice that there's a turtle on his hat?) I wish Raya did not have to do so many hard things, but I hope that someday she will look back on these experiences in her childhood and know that they are shaping her into the person God wants her to become. I love to see her be brave.

*If anyone should happen to be interested in reading about the rest of my marathon experience, it can be found here.*
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