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Friday, September 26, 2014

It was nice while it lasted


Well, if I had any lingering doubts about whether or not Raya was on her way back down motility-wise, they were erased by the sounds of her vomiting at 5:30 this morning. We've seen clear changes in her mood (i.e. mood swings, bursts of high energy followed by the need to lay down and rest, crabbiness, etc.), changes in her sleep patterns and waking up at night again, major decrease in appetite, difficulty swallowing, less verbalization, increased sensitivity to sound and light, decreased attention span, and just overall not as happy as she was during those 2 really nice weeks she had earlier this month.

Last night, I gave her the evening dose of one of her meds and her sleepy medicine and then sent her to bed. As she was leaving the kitchen, she put her hands on her belly and asked for a Farrell bag. I was in the middle of about 10 things so I told her I'd connect one to her stomach later. As is often the case, unfortunately, I forgot, so I felt really awful when I heard her throwing up. Being the early riser that he is, Cole woke up when she started puking and ran out in the living room to find me. (I was on the couch with Piper.) I put Piper in her bed and went in to see how Raya was doing.

Since it was dark still, I didn't see the puddle that had run onto the carpet from the tarp that's under her bed so I stepped in it. She was pretty much done by the time I came in and was just dry heaving at that point, so I sent Cole to the laundry room to bring us some dirty towels to clean up with. Her bed was damp with pee because she had to get extra fluids overnight last night and there is just no diaper that can contain it all. It was only 5:30 though and I wanted her to go back to sleep, so I plugged in a Farrell bag to her G port, changed her pull-up, threw a blanket over the pee, and covered her back up with another blanket. Nobody went back to sleep though. Cole and Kaida were in the kitchen at 5:55 and Raya showed up happy and smiling about 15 minutes later. She was feeling great by then and had even unplugged the Farrell bag from her button. When I looked at the Farrell bag, it had recognizable remnants of the 4 or 5 pinto beans she had eaten for dinner last night in it. Bummer. Yesterday, there were specks of 12 hour old Nexium in the bag I drained her stomach into. It is never a good sign to see something come out that went in 12 hours earlier.


I didn't want to do meds in her stomach in case she threw up or needed the Farrell bag plugged in again, so I tried to get them to go through her partially clogged J port. After a flush with "magic water" (seltzer), an accidental spraying of medicine all over the floor, and another flush of magic water, I got the first med through and then started to push the Nexium, which I knew was a terrible idea before I even did it. The Nexium we use comes in foil packets. It's a powder that we mix with water, suck into a syringe, and push through the tube. The problem is that it starts to thicken as soon as you mix it. Trying to push thick, viscous Nexium through a partially clogged J tube (picture a clogged artery or drain pipe with gunk built up on the insides) with a 35ml syringe was wishful thinking at best. I think I got about 1/3 of it in before the syringe plunger wouldn't budge anymore. Thankfully, the magic water cleared it enough that the formula would run through it.

I didn't want to waste the rest of the dose of Nexium so I put it in her stomach. Unfortunately, having to work to clear the J port made her belly hurt and made her feel like she was going to puke, so she wanted the Farrell bag back on. That would have meant losing the Nexium and whatever water she'd be drinking at school, so I decided to give her a placebo of sorts. I plugged her Farrell bag in but I left one of the clamps closed, and told her teacher that she could unclamp it later if Raya seemed uncomfortable or pukey.

When I went to pick her up from school, I couldn't believe how sweaty she was. It's been a little muggy today but none of the other kids were even close to how she looked. When she walked out the classroom door, I said, "Holy moly, girlfriend, you're really sweaty!" She giggled and her teacher looked at me with wide eyes and said, "And this is after I made her stay in the shade the whole time and didn't let her run around!"

Her arms were sticky and clammy and she was just gross. We went home and fed Piper some lunch and the girls took a bath. We were almost late for Raya's appointment with the ENT because she knew she was going to the doctor and decided she'd rather stay in the nice, warm bathtub instead. It wasn't pretty but I got her out and dressed for her appointment and we got there with about 10 minutes to spare. As I was getting the stroller out of the car for Piper, I noticed this license plate across from us in the parking garage:
It says Dr. Cute. I got a good laugh out of that.

She brought her pink blanket with her and that made her feel a lot better than she usually does. She really did not want to go to this appointment no matter how many different ways I tried to explain that the doctor only wanted to help her feel better. She's no dummy and she knows that some of these appointments just suck. She was pretty happy while we waited but she did ask me to plug her Farrell bag back in. I was glad that I did because it instantly started draining, first pale green and then bright yellow bile. That's a sign that she's having a bad motility day, and it hasn't been that bad since shortly after she got the tube put in back in July.
And thank heavens for Piper being such an easygoing, laid back baby. She may not have started out that way but she has done so well at most of Raya's appointments in the last couple months. As long as she has a clean diaper, a full tummy, and her soft blankie, she's a happy girl.

This was Raya's first visit to the ENT. I don't know why we never thought to add an ENT to the mix sooner, but I'm really glad we've got him on board now. He is just as wonderful as all of the local moms told me. The GI's office had faxed over about an inch thick stack of records to him either yesterday afternoon or this morning, and he had actually gone through them before he came in to see us. The reason I decided to take her to him is that she's been doing this awful throat clearing for probably 3 or 4 months now, and nobody can figure out why. We've tried adding allergy meds in case it was postnasal drip, and we've tried different combos of reflux meds, and didn't really feel like any of that changed anything. He asked if I was willing to let him try to get a look at her throat by putting a fiber optic camera in through her nose & down into her throat. I knew it wouldn't be pleasant but we were there and had the time to do it so we did it. He explained to her that he was going to put a special telescope in her nose and look at her throat and that it would feel kind of yucky but that it would help him see why her throat was bothering her. She didn't want him to do it and covered up her nostrils with her thumbs, but her reaction wasn't as bad as I thought and I could tell that she was trying to be brave, so we went with it. She got pretty nervous while we waited for him and the medical assistant to come back.

The procedure was not fun but we got it done. I sat on the chair and she sat on my lap. I wrapped her up in her blanket but let her have her hands out so she didn't feel trapped. The MA held her head back against my chest and I bear hugged her but had her hold my hands. She wiggled and screamed and cried but once the camera was in, she held still. He got a nice look at her vocal cords and her throat. He said that structurally, everything looked great and her larynx looks good. There's cobblestoning in her throat (i.e. it's bumpy and irritated) and the tissue around her larynx is inflamed, so the throat clearing is happening for a reason and not just out of habit. He couldn't tell what the cause of the irritation was, but it was really REALLY nice to have visual confirmation that there is something wrong with her throat instead of just guessing. Hallelujah, visible evidence of something.

So the possible causes are 1. reflux, 2. nasal/sinus congestion causing postnasal drip (which he didn't see but did say that she had some nasal congestion, even though there were no outward signs of it) and 3. allergic inflammation of some kind (like eosinophilic esophagitis, which we've never 100% ruled out but have never seen evidence of). Now all we have to do is figure out which of the 3 it is. Ha ha. Simple as that. In all seriousness though, I am really happy to have had him look in her throat and see what he saw, and I'm really happy that he wants to collaborate with our GI and allergist to try and come up with ideas and/or a plan. He said that he didn't see anything that made him feel like it would be worth having him put her under to take a deeper look unless she was going to be put under anesthesia for another procedure that he could just jump in on. I'm thinking it may be time for another EGD. Her last endoscopy was quite a while ago, and we've introduced a lot of foods since then, so it may be worth a shot. I'm not getting too excited but I'm feeling more hopeful than I have in a while that we might find a way to make her more comfortable.

The unfortunate thing is that if it is reflux that's causing the irritation in her throat, then it may be time to take another look at doing a fundo in order to prevent long term damage. We've done so many other things to try and prevent having to do a fundo, and she is not a good candidate for it due to her gastroparesis, but having GERD that is not controlled can lead to more serious conditions, so it's something we may have to consider. If we did do a fundo, we would probably have to do a pyloroplasty too. (FYI, a fundo, aka Nissen fundoplication, is a surgery where the top of the stomach is wrapped around the lower end of the esophagus to make the sphincter tighter so that stomach contents can't reenter the esophagus. Pyloroplasty is a surgery that cuts into the muscles between the stomach & small intestine to make the stomach empty more rapidly. It would be necessary if we did the fundo because the fundo would prevent vomiting and her stomach empties too slowly so she'd feel horrible if she couldn't vomit.) But we're not getting ahead of ourselves here. We would have to have good, solid evidence that the fundo was necessary before going through with it.

After the ENT looked in her throat, she curled up in my lap and kept crying for a few minutes but we all told her over and over again how great she did and how tough she was, and acknowledged how yucky it must have felt, which I think is very important. Within about 5 minutes, she was walking around playing with Piper and climbing all over the stroller again, and happy. She wouldn't talk to the doctor anymore but she accepted the sticker he gave her.

As if that wasn't enough fun for one day, Raya's GJ tube broke. At 4:45. On a Friday afternoon. We were getting ready to go to the church for an activity, and I told her to get her shoes on while I went to the bathroom. As soon as I closed the door, I could hear her yelling to me. I yelled back that I was going potty but I couldn't tell what she was saying. When I walked out into the kitchen, she came down the hallway holding the extension tube from her J port. She had an "uh oh, I'm in trouble" look on her face. When I got closer, I realized that it wasn't just the extension tube. The plastic ring that locks the extension tube into place had popped out of the J port.

{Here's a little review of what a GJ tube looks like on the inside. This is a different brand than what she currently has but it works the same way. The jejunal portion is what has gunky buildup in it that's making it hard to get anything through it.}

I asked her how it happened but I couldn't make sense of what she was telling me. It has taken quite a beating lately with the J being partially clogged. I've had to do a lot of flushes that were hard to get in so it's had more pressure on it than it's probably supposed to. I took the little ring off of the extension tube and popped it back in, but it's not going to hold out for very long. In fact, it fell out again during the practice for the program the kids will be doing at church on Sunday. She was standing there singing her little heart out and I suddenly realized that her shirt was soaked. It had popped out again and was leaking formula everywhere. Oops.

She was also soaked in sweat again by the time we got home so she had another shower and some sleepy medicine to help her bring her back down from the walls she was bouncing off of. Once she was calm and relaxed and could hold still for me, I taped the heck out of her tube to keep the extension from coming out so she can keep getting fed.

I also had to plug the Farrell bag back in because she was feeling really lousy by then. She's been asleep on the couch for about 3 hours and is pretty much sleeping sitting up. She's already woken up once and the Farrell bag is filling up with clear yellowish-greenish bile. She asked for a puke bag when I went to check on her. (well, she nodded her head yes when I asked her if she needed one) I don't know how long the J port will hold out without leaking. If it wasn't partially clogged, it wouldn't be a problem having it work until Monday but without the J port being firmly attached, I don't know if we'll be able to flush the tube with enough force to clear the blockage enough to feed her & get meds in. 'Twill be an interesting weekend. I got a call back from the GI nurse at 5:10 and she said that IR should have time to change it on Monday. I'm supposed to call them first thing Monday morning and see if & when they can fit her in, and hopefully when they told her they could do it Monday, they were remembering that she has to do general anesthesia to get it in. Based on how she's feeling tonight and the condition the tube is in, I just hope we make it through the weekend without having to be admitted.

On a more positive note, I overheard the most ADORABLE conversation tonight. Before the kids practiced all the songs for their program, they had pizza for dinner. We knew they were serving pizza so I drove through Chick-fil-a on our way there and got Raya some fries so she could eat with her friends. The kids all sat down with their classes (they're divided by age) and the leaders handed out pizza. I got a plate and put a couple of fries on it and set it on her lap. She sat with her friends and they all chit-chatted away like 4 and 5 year olds do. I realized that her Farrell bag was still unclamped so I clamped it to keep the fries from clogging it. As I squatted down next to her and started messing with it, a couple of the little girls started looking closer at her backpack & tube and started asking questions about it. Without missing a beat, the little boy sitting next to her pointed at his stomach and said, "She just needs medicine in her stomach and that's how it gets in there." and went back to eating his pizza. The other kids were satisfied with that answer and went back to eating their pizza too. I think Raya said something about the backpack having her pump and formula in it but I was too busy having my heart melt over the darling little boy who doesn't find anything strange or gross about Raya having a hole in her stomach for medicine to go into. It's possible that his parents have talked to him about her feeding tube, but even if they have, he is obviously a sweet kid who looks at her and just sees his friend Raya. I get all misty thinking about it. As her mom, all I've ever wanted is for her to be accepted and loved, and I can't even explain how great it was to see how this whole feeding tube business is not a big deal to any of her friends. She's just Raya, their friend that wears a backpack and eats fries instead of pizza.



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