Skip to main content

Changes and plans

Helping Daddy trim the trees :)

Life is better when you have a plan. We've been coasting the past few months. Mostly out of necessity since I've been occupied dealing with unanticipated things with Piper and learning to be a mom to 5, and also because we've been at the mercy of Raya's fluctuating motility. I'm tired of coasting but it's always hard to know what to do next.

All of my life, I've been taught to make goals, make a plan for reaching them, and then do what it takes to reach them. That way of life has served me well in many aspects of my life, but it has been a source of frustration when it comes to taking care of Raya. She has taught me that you can't always put a timeline on goals, no matter how good your intentions are or how worthy the cause seems. You can try, but you can't always control all the variables that will come up and throw a wrench into your well-laid plans.

A couple years ago, we thought we were cruising towards having an oral eater. She was doing fabulously with 4-5 bolus feeds a day, running in over 25 minutes, and starting to explore food at a decent pace. We thought that continuous feeding was a thing of the past and that things would only go up from there. Now here we are, nearly 4 1/2 years of tube feeding later, and we are further from being off of the feeding tube than we've been in about 3 years. If you've been following my blog for very long, you'll know that being off the feeding tube is not my top priority. Having Raya at her optimal health is my top priority, and there are a lot of criteria that will need to be met before I will feel like the feeding tube no longer needs to be part of that equation. I'm okay with having the tube there as long as she needs it for support, but I have been tired of feeling like we have stagnated again. I imagine it's a little bit like sitting in a rowboat with no paddles. We start to get close to the shore but then the water carries us back out.

The past few weeks have not been great for Raya. Her whole digestive tract was kind of rebelling against her, we had all those problems with the feeding pump, and we realized she was not as comfortable on 75ml/hour as we thought she was. I changed her probiotic and we think we have figured out the pump problems, and she finally seems to be coming around after all of that.

Since we're at a pretty good place right now as far as how Raya's feeling and with it being summer break, it's time to start making some changes. Her GI doctor called me yesterday because she had forgotten to get back to me about some things I emailed her about after our last appointment. She apologized and I told her we were even because I completely forgot about and missed our weight check last week. :) We ended up having a very productive 20 minute long conversation and I got off the phone feeling pumped up and ready to get things rolling again.

Here's the plan:
1. After MUCH thought and consideration, we are switching back to a GJ tube next week. There are a lot of possible pros and cons to doing this, but what it boils down to for me is quality of life. That sounds so dramatic, but here's why I put it that way. Imagine being 4 years old and having to wear a backpack for 16 hours a day when you live in a climate where it's over 100 degrees for 4-5 months out of the year. I have tried several times since her gastroparesis flared again in March to increase her pump rate above 75ml/hour and each time, it has been unsuccessful. When she was on a GJ tube before (from 11 mos old until almost 21 mos) we got her J feed rate up to 95ml per hour. If we could feed her at 95ml/hour right now, that would reduce her time on the pump from 16 hours and 40 minutes down to just over 13 hours. That's a pretty significant difference when you think of it in terms of her not having to wear her backpack! Her GI thinks we may be able to get her up as high as 110-120 based on her size & age now compared to when she had the GJ before. It would be amazing to have her not need to be on the pump every waking moment of the day and half of the night. {read: Mommy might actually get some uninterrupted sleep!!}

2. Once the GJ is in, we'll give it a month or two to see how it changes things for her. If it's helping, great, we'll leave it. If it's not, I'll just switch it back to a G tube.

3. When Piper is ready to start solid food in the next couple of months or so, I will start making baby food for Piper that is also Raya-friendly, and we will start replacing some of Raya's formula with food. I don't know that she will ever be on a diet of 100% blenderized food instead of formula, but we would like to see her be on more food than formula at some point, whether it's food that she eats or food that we put into her stomach through her tube. I think starting her out from the most basic point the same way I would be starting her out if she was a baby just starting solid foods will be a good thing for her body.

4. Our GI is going to contact an out-of-state motility specialist and we will hopefully be traveling somewhere outside of AZ to have testing redone and get a fresh perspective on Raya's case from a motility specialist.

It's a LOT to think about, and I am already having some major anxiety about having the GJ placed, just based on prior experiences with our interventional radiology department and knowing how hard it will be on Raya to have it done. We really do feel like it's the right thing to do though, and we have nothing to lose by trying it out again. I think I've got all the arrangements made for the other kids to be with friends that day, so the only thing left to do is sit down and have a talk with Raya about what we're doing and pray that she handles it well. I won't be allowed into the IR department with her and our hospital does not sedate for GJ placements, so she will be wide awake and alone with whoever is working in IR. It could get really ugly.

My favorite part of the conversation was when Raya started to climb up on my lap and tell me rather loudly that she wanted a potato. I whispered to her, "Raya, I'm talking to Dr. S and I need you to wait until I'm done talking to her." Her face lit up and she said, "You're talking to S?!" The doctor heard her and said hello to her, so I put the phone up to Raya's ear. She said, "Hi Dr. S! I went poop in the toilet today!" When I took the phone back, Dr. S said that talking to Raya totally made her day. :)

It's amazing how much better it feels to have a plan in place, along with several back-up plans. I am so, so grateful for a kind and caring GI doctor who has shown me again and again in the last 4 1/2 years that she truly loves and cares for Raya. She has been so supportive of the ideas I've had and the things I've wanted to try with Raya and I'm grateful to have a good working relationship with her.

Wish us luck, this could be interesting!

Comments

  1. Wow, these are exciting and hopeful changes. I wish you guys the best. P.S. - Not sure where your GI is thinking, but in the unlikely event you happen to end up at Seattle Children's (Our motility specialist is based there and I love her), let me know - would love to meet you in person and provide any local support you may need. I know you don't know me at all, but I have read all your posts and when a new post pops up, it makes me smile. Your blog has helped me so much on my own journey with a complex GI kiddo.

    ReplyDelete

Post a Comment

All comments will require approval from blog owner prior to being published.

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 …