Skip to main content

In like a lion, out like a lamb...then back to being a lion

The title of this post doesn't refer to the month of March, it refers to the day we've had. :)
Things started out just peachy. Ashtyn, being the amazing big sister that she is, decided to get Raya ready for school all by herself. She changed her diaper, got her dressed, brushed her hair & put it in a ponytail, and then she & Cole decided to get her feeding pump ready too. It was adorable, even if they haven't quite gotten the hang of filling the pump bag & getting the cap on tight. Raya was in a great mood and we were all set to get to school on time for the first time this week. 

Then I asked her what she wanted to take to school for a snack. She picked out a grape Splash, and I poured about 2 ounces into her new purple sippy cup. That's about all she will drink at a time, especially if she's getting a pump feed at the same time, and since the kids had overfilled her pump bag a little bit and I planned on putting the sippy cup in her pump backpack to keep it cold & keep it from spilling, I didn't want it to be too heavy. She saw that the cup wasn't even half full and was not happy with me. She started saying, "I want lots!" When I explained to her that she could have more when she got home from school, she started YELLING, "I want lots!" over. and over. and over. By then, it was 7:35 and the other 3 kids were in the car ready to go. I put her backpacks in the car (yes, there are 2) and then went back in to retrieve her since the attempt at reverse psychology had failed. I told her the big kids and I were leaving. She didn't care. I got her to the car and we commenced a 10 minute wrestling match. I was trying to buckle her into her carseat and she was resisting in every way she could. She's surprisingly strong. And loud. The garage door was open so I'm sure the whole neighborhood could hear her. The whole time, she kept yelling, "I WANT LOTS!" (referring to wanting more Splash in her sippy cup) The other kids were all plugging their ears.

Finally I got her buckled in and we listened to her cry and yell, "I WANT LOTS!" all the way to school. Then when we got to school at about 7:55, she wouldn't get OUT of the car. She kicked and cried all the way from the car to the gate, where her teacher was thankfully still waiting, which meant that I didn't have to go sign her in at the office for the 3rd day in a row. About halfway there, she had kicked off one shoe without me noticing so I put her down on the sidewalk and went to get it. When I was putting it back on her, I noticed that at some point between buckling her into her seat and getting her to the gate, her G tube had come out. The fully-inflated balloon was already dried off on the outside so it's possible that she may have pulled it out herself while we were driving but I have no idea. Thankfully her stomach was still empty at that point so there was no mess to clean up and her clothes didn't get wet.

Of course this was a day when I had just grabbed my wallet on the way out the door so I didn't have my emergency kit with me. I also hadn't bothered to put a bra on yet, which I should know by now means that I will inevitably have to be seen in public for longer than I intended. I was going to take her back home to put it in but then the teacher reminded me that I had an emergency kit in the health office. (duh) Since I thought that the likelihood of Raya letting me buckle her back into her car seat to drive all the way around to the other side of the building where the office is was next to nothing, I peeled her off (because she was angry but clinging to me at this point) and handed her over to her poor teacher. I got back in the car, at which point Cole not-so-happily informed me that they were now too late to eat breakfast in the school cafeteria since they close the doors at 8:00 and it was 7:59. I parked the car and let them out and then Kaida and I headed in to the health office. 

Her very sweet preschool teacher had her lying down on one of the bed things (and I had to force myself to not think about the fact that that's where they make all the sick kids lay down while they wait for their parents...) and she was talking softly to her and singing songs with her to help her calm down while they waited for me.  There was a substitute health aide there today but we were able to find Raya's emergency G tube kit in one of the cupboards. She has a whole basket with her name on it. I have to say, I did a pretty stinkin' good job on that emergency kit. It was PERFECT. I had an empty syringe to deflate the balloon with, a syringe filled with KY jelly, a Q-tip with the cotton torn off of one end to put in the tube to keep it straight (not recommended or necessary with a MicKey button but we use an AMT Mini One), and another syringe pre-filled with 5ml of water, which is what her balloon needs. The whole thing went pretty smoothly. She gets anxious now because we had a traumatic experience a few months ago with putting a tube back in but once I was done, she got over it pretty fast and was ready to go to class.

Whew. After that, I came home and did a few things (finished putting my underclothing on, for starters) and before we knew it, it was time to go pick Raya up. After Kaida had lunch, the girls wanted to do dishes again. I let them. The kitchen sink has been a FABULOUS babysitter the last couple days. 
 This time they only got to play in it for about an hour because Raya had an appointment with her allergist. Once again, she got upset with me on the way there because she dropped her Dum-Dum on the floor in the car and couldn't understand why I wasn't picking it up for her while I drove. She started repeating over and over again, "I want my Dum-Dum!" and then all of a sudden, she was quiet. I thought maybe she had just gotten tired of whining but when I parked the car and turned around to look at her, she was sound asleep. I thought she'd wake up at some point in the process but she slept through the ENTIRE appointment. 

I have to admit, it was pretty nice to be able to talk to the doctor without having to deal with kids. The visit itself wasn't really very productive but it was a good follow-up. At this point, there's really nothing that the allergist can do except for keep following what happens over the next few months. I filled him in on everything we've talked about since January, and apparently he got a letter from the GI in January telling him what our plan was. I was able to tell him what we had already done (sigmoidoscopy, removal of solid food from her diet, and switching back to elemental formula) and what we're still trying to do (solid food gastric emptying study). After emailing back & forth with the GI nurse yesterday & today, we are also going to be doing an impedance study sometime in the near future to measure her reflux & see how often she's actually refluxing when she tells me she has puke in her throat. 

The timing of the appointment was good because we were also able to talk about the seasonal allergy symptoms she's been having & what to do about it. What we really need is for the stinking air quality to improve so EVERYBODY in the whole metro area can feel better because the last few weeks have been awful, even for people who don't usually have seasonal allergies. I'm going to start giving her something for it but it will have to be through the G tube without her knowing about it because when I've let her have it by mouth, she gets upset that I won't let her have more of it. 

 Other than that, there wasn't really much to talk about. We have the best allergists and I kind of wish there was more they could do for her at this point because they're so wonderful to work with but until we start back up with food again, there's really not. We scheduled a follow-up for 6 months out and if there's any reason to come back before that, we'll call. As we were checking out, he stopped by the sample closet and gave us a few cans of flavored Neocate and some Splash, which was SO appreciated. She finally woke up when we were checking out, so he got the basket of Dum-Dums and let her pick 2. They also gave her a Tinkerbell sticker so she was a happy girl. 

The happiness wore off once we got home and I made her stop doing dishes so that the big kids could empty the dishwasher. That girl LOVES playing in soapy dish water.

This evening I got a hugely disappointing text message that I knew was coming but have still been dreading. Her sweet, wonderful respite provider is graduating from college in a couple weeks and will be taking a new job as soon as she graduates. We've known she would be leaving once she graduated but I've been living in denial. She's been with us for the last 18 months and the girls are absolutely in love with her. She saves my sanity 3 days a week and we will miss her dearly. That has also meant that she's been able to stay home from church every week to avoid exposure to germs, and even when we find a new provider, we plan on taking her to church so that will be a big change for all of us. The timing is not good. Raya's OT is gone until the first week in May. We're doing make-up sessions with a different OT but it's still a disruption from the norm. As soon as she gets back, we're losing our respite provider. Even if we have a new one a that point, there will still be an adjustment phase. Since we started getting respite, she's been able to stay home from church every week to avoid exposure to germs, and even when we find a new provider, we plan on taking her to church so that will be a big change for all of us. Throw on top of that the fact that we're trying to move forward with something to help Raya be more comfortable (whatever that ends up being), and I feel like we're heading into a big fat storm cloud. SO yeah, that was a little bit of a panic moment for me. I'm trying not to think too much about it because it stresses me out. I know we'll find someone who will be great, but I don't enjoy the process. 

 The final disappointment(s) of the night happened right at bedtime. First, she did not magically fall asleep like she's supposed to, although now that I think about it, it's quite possible that I forgot to give her medicine even though I've been thinking all evening that I did. But yeah, I'm pretty sure I forgot. She stayed awake until about 10:30, which meant that I didn't really get any studying in except that we did watch some YouTube videos about the immune system. Right when we were trying to get her to go to bed, she said something about her elbow hurting and her arm being red. I ignored it at first but then I looked over at her and from clear across the room, I could see that her arms were red. Upon further examination, it looks like she had an allergic reaction to the dish soap. The under sides of both forearms right up to her elbows were bright red.

It's kind of hard to see it in the picture but they were bright red, scaly looking, and parts of the red areas were hot to the touch. She complained that they hurt, which means they must have really hurt, so I felt bad. I told her that it was the dish soap that made her arms hurt and that means she can't do dishes anymore. It probably didn't help matters any that the girls have used about half a bottle of dish soap in the last 2 days, so I guess it shouldn't be surprising that her skin is irritated. 

So yeah, the day started out rough, got better, got rough again, and stayed a little rough. Then finally, she gave it up and went to sleep and I got my reward for a hard day's work:
Motherhood pays in intangibles, you know. :) (and yes, I am tired, which is why I look tired.)


Popular Posts

Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

This series has been a long time in the making. Back when Raya got her NG tube, I had no idea there were so many different adhesives on the market. At the hospital, they had used some kind of fabric tape in a box that had to be cut with scissors and that was the ONLY thing we accidentally left at the hospital. Raya caught her little pinky finger on the tube a couple days after we got home and the only medical tape I had ended up bringing home was Durapore. This tape is VERY sticky, very strong, and definitely not the best option for the tender little cheek of a 2 month old baby. A couple days later, we went to the GI doctor and the nurse saw the tape and told me that Duoderm would be much gentler on her skin and she gave me a couple of 6x6 sheets to try out.
That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

Sensory Processing Disorder: How to Make a Weighted Blanket

Lately I've been toying with the idea of making Raya a weighted blanket. She loves heavy things and has a lot of sensory seeking behaviors in regards to proprioception. Translation: she craves sensory input that helps her to gain awareness of where her body is in space, and it takes stronger than average input for her to get the feedback that her body is craving. (or at least that's how I understand it :) She seeks out "heavy work" activities, like carrying heavy things, pushing heavy things around on the floor (chairs, full laundry baskets, etc), and anything that gives heavy resistance to her muscles and joints. Lucky for us, carrying her backpack is a good heavy work activity because the poor kid gets to do that for a few hours a day. :)
The idea behind a weighted blanket and other heavy work activities is that when the child gains greater body awareness through proprioceptive input, the nervous system can be calmed and the need for constant fidgiting, moving, jump…

Feeding Tube Terminology: G tube words

One of the many things I didn't have a clue about before Raya got her G tube was the fact that there are LOTS of different kinds of G tubes, all with similar but different features & functions. Some of the terminology that was tossed around in the beginning was very confusing. When I met with the surgeon to pick out a button for when Raya's initial tube was ready to be changed, they pulled a bunch of tubes out of a cupboard, put them down on the table in front of me and said, "What kind do you want?" I had NO idea what to pick, all I knew was that anything would be better than what we had at that point.

Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
PEG stands for percutaneous endoscopic gastrostomy. In other words, a gastrostomy tube is placed through the abdominal wall using an endoscope to visually guide the surgeon to the best location to place the tube. The term PEG is used to refer to …