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GI Visit & Tubie Friends Delivery

We had a lovely visit with Raya's GI doctor yesterday. For whatever reason, Raya was having a terrible day. She was clingy and whiny and fussy all day long. Literally all anybody had to was look at her and she would start crying. She took a nap but I had to wake her up to go to the doctor. All the way to the appointment, she cried and screamed. When I let her help me carry the Tubie Friends that we brought with us into the clinic, she perked up a little. That lasted until it was time to take her dress off and get on the scale and then she had a meltdown.
Not much to my surprise, Raya has grown a LOT in the last month. At her last weight check 6 weeks ago, she weighed 12.835kg (28 lbs 4.7 oz). Yesterday, she weighed an unbelievable 13.63kg (30 lbs 0.8 oz). She gained a whole kilo, which is 2.2 lbs!! If she was an orally eating child, that would be very exciting but in this case, it means that we overcompensated when we increased her calories a couple of months ago. We've overfed her right into the 75th percentile. :) She's now within 3 pounds of her 4 1/2 year old sister. I thought they'd at least be teenagers before they started sharing clothes. :)
Here's what I think happened. Back during the time frame where she was eating a lot of oral calories (up to 300/day), we were subtracting the calories she ate from her total formula calories no matter what the source was. The 200-300 calories she was eating might have come from nothing but Wheat Thins and peanut butter, which obviously will not have as many nutrients as 200-300 calories of nutritionally balanced formula. Then she got sick and quit eating right at about the same time we increased her caloric intake by 90 calories per day, so not only did she go back to having 100% of her calories come from formula, but she also started getting an additional 90 calories per day. On the bright side, we know she's capable of putting on weight. :) It is SO strange to have that much control over a child's nutrition and weight management!

Overall, we had a very nice visit. I had very low expectations for Raya's behavior since she'd been in meltdown mode all day. Right before the doctor came in, she was laying on the floor screaming because I had made eye contact with her. It was just that kind of day.
When the doctor came in, she picked Raya up and carried her out into the hallway to get a Dum-Dum out of the box. She came back a happier girl and got herself nice and sticky while her doctor and I chatted. Things have been going really well for Raya from a GI standpoint the last few months. She's tolerating her bolus feeds very well, hasn't had any issues with vomiting or diarrhea, and just overall has been doing well. Due to the high weight gain in the last month, we're going to reduce her calories a little bit. We're going to trial her on a small amount of 1% milk to replace an equal amount of her formula and increase as tolerated up to 4 ounces. If that goes well, she'll be reduced back down to about 930 calories per day instead of 990.

The cultures that we did last week on Raya's stoma infection came back inconclusive. In her doctor's words, "They must have been contaminated because there was all kinds of funky stuff growing in there." :) The good news is that whatever the infection was seems to have pretty much run its course at this point so we don't need to do any antibiotics for it. She did make a comment about how thick the band of scar tissue around Raya's stoma is. We may have to do something down the road involving lasers and anesthesia but there's no good reason to do something like that right now. I think the scar tissue (which is a result of massive granulation tissue) has helped prevent new granulation tissue from being able to form so we'll just keep the scar tissue. :)

We discussed whether or not it's going to be beneficial to keep Raya on Periactin and decided that for now, the side effects are outweighing the benefits. When she was taking in more calories orally anyway, the Periactin seemed to help drive her hunger. I still don't believe that hunger was what actually motivated her to eat, but I think that it allowed her to eat without feeling uncomfortable due to the increased rate of gastric emptying that Periactin causes. In other words, she was eating larger quantities of the foods that she WAS eating because it wasn't uncomfortable to do it. However, after she was sick and stopped eating, that effect went away and has not returned. Each cycle of Periactin has been like playing Russian roulette with the side effects. A couple of times she's been just fine with no noticeable side effects and other times, she's had extreme mood swings, drowsiness, insomnia, and fun things like that. We're going to stop Periactin indefinitely for now but Dr. S left it up to me to decide at any point that I want to put her back on it. (I really do appreciate that about her!)

I mentioned briefly before that we made our first clinic delivery of Tubie Friends yesterday. :) I wanted to just bring them a couple first so they could see what they were and so that they wouldn't have to find a place to store a whole bunch of them. Due to the aforementioned Raya meltdown, I forgot to take any pictures, but the doctor & MAs were excited and really liked them. Seeing their reactions made me really excited to get more of them done and take them in. In case you're not familiar with the organization, Tubie Friends provides stuffed animals with feeding tubes and other medical devices to children free of charge. The organization is in the process of applying for 501c3 Non-Profit status but for now, they are operating solely on donations from individuals.

This organization is doing something amazing for children. I would venture to guess that most parents of children with feeding tubes have had little or no exposure to them until their own child has one. This process often happens quickly and can be traumatic and overwhelming for a child and for their parents. A lot of children with feeding tubes also have other medical conditions that mean frequent hospital and doctor visits with a lot of poking and prodding. Tubie Friends was started by some mothers who had seen the benefits of their own children having stuffed animals with the same medical devices that they had to accompany them to these appointments and wanted to share that support with others.

I saw this myself with Raya. I had never planned on making her a doll or stuffed animal with a feeding tube in it because I didn't really think she would be that interested. I ended up doing it anyway and couldn't believe how excited she got when she saw her doll with a "tubie" in it just like hers. That was when I decided that I wanted to be involved with Tubie Friends, so I volunteered to be a "Tubie Friends Surgeon". If you would like to contribute to Tubie Friends and help provide this meaningful service to kids like Raya, click here for details about how to help. If you know a child who would like to have a Tubie Friend of their own, click here for an application.


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