I’ve recieved a few messages recently with questions about Rae’s tube.
Let me explain…
The port is that end of the tube with the clear plastic plug looking thing that hooks into her pump. The pink side is opened to hook her up to the pump, and the right side is for putting medicine into.
The tube is about 75 centimeters long.
These ports are awfullllllll. They keep getting loosened every time we hook her up to the pump and getting stretched out and won’t close properly. Which leads to a leaky tube, which, as I previously described, smells like vinegar and death. Which also means I have to change her tube more frequently.
Changing her tube is basically child abuse. I have to burrito wrap her in a blanket, sit on her, thread the tube up her nose and down her throat about 30 centimeters. Usually you have to measure by taking the tube and holding it up to her nose, to the back of her throat, to right under her rib cage and marking how long the tube needs to be threaded, but I’ve done it enough to know that she needs about 28-30 centimeters to make it to her belly.
This, plus her tube is what I need when I change it.
The big syringe to flush water through, the small one for the puff of air, the clear tape is Tegaderm and the beige is Duoderm. Both tapes have to be cut to fit her face.
Threading it in her nose is probably the most heartbreaking thing ever. It’s child abuse. Poor Rae sobs uncontroablly, and sometimes I don’t get it on the first try. Sometimes the tube hits the top of her nasal passage and comes back out of her nose. One time the nurse did it and it came out her mouth, and other times I’ll get it in and placed and she’ll get her arm out of her burrito wrap and pull it out. But once it’s finally in I check to make sure it’s in the right place by puffing a mililiter of air into the port and listening to her belly with a stethoscope for a whooshing sound. I’ve mentioned this before, but it you don’t hear a WHOOSH it could mean that the tube went into her lungs rather than her stomach. Awesome.
So I listen 12 million times. Or, if you want to be gross you can draw back a couple of mls and see her stomach juices.
Then I have to put on the duoderm tape to protect her face from the tegaderm tape which gets changed every few days. The remainder of the tube and the port gets taped to her back or tucked into her onesie until she gets hooked up to the pump. It stays in 24/7 rather than replacing the tube every 12 hours or so.
So after the tape is put on I hold her and cry and tell her I’m so so sorry for a few minutes, then she calms down and goes on her way and starts destroying my house with Little S.
This is the pump.
It’s electric and regulates how many ml Rae gets an hour. The goal is to have her consume 750 ml in a 24 hour period, which is about 25 ounces, plus regular finger foods. This is a normal amount of food for a one year old, that isn’t some crazy amount if food. It’s pretty standard. Right now she usually will drink between 6-10 ounces by mouth (like right now it’s almost eleven and she’s had about an ounce and a half of her bottle since 8 this morning) and the rest via her nightly NG feed (usually between 450-600 mls a night). The rate is about 45-50 mls an hour, so it usually takes about 10-12 hours for her to finish the bag.
Oh, NG tube means nasogastric, nose to stomach basically. When will she get it taken out? This is supposedly a temporary fix to get her weight up, but my GI has already mentioned the possibility of a more permanent port put into her stomach if she doesn’t wean well from the NG feeds. Right now the plan is that once she gets well onto the weight chart, we will try giving her less via the tube and see if her body tolerates it or if she begins losing again. If she can’t sustain herself when we wean, we’ll do the g tube (requiring surgery to put a port directly into her belly for feeds).
Her GI problems are not really improving yet. Even on the Elecare junior, which is similar to the Puramino in that it’s hypoallergenic and “predigested” she is still having GI issues unless she has a daily dose of miralax. But personally, I’m not comfortable giving her miralax daily for a long term solution. It feels like if she has to have a daily laxative, there’s an underlying problem and we are just treating the symptom and not finding the cause.
I’ve heard over and over for 6 months that Rae is malaborbing her food, meaning her body doesn’t process foods right. So if the tube is the thing that’s going to keep giving her enough nutrients to sustain and help her gain, even if that ends up being a more “permanent” measure, I think I’m finally ready to accept that.
I mean, for goodness sakes, the girl gained a pound in less than 3 weeks after the tube was placed! In over 6 months before the tube, she had not even gained 2 pounds total! As crazy as the prep and all the requirements and the leaky tube and the placement are, I’m finally feeling confident in that she’s going to be okay. Just knowing that the tube is there when she has off days and doesn’t want to eat, or when she gets sick is such a blessing.
I hated the tube a month ago. I absolutely despised it. It terrified me and everyone around Rae.
It felt like failure.
It felt like I had failed her.
But a friend’s young daughter saw Rae and her tube for the first time and looked weirded out and asked WHATS THAT?! My friend promptly said “It’s just a tube. It goes from her nose down to her stomach to help her eat. Isn’t that AMAZING?”
It is amazing.
Rae is amazing.
And it’s just a tube.
It doesn’t define either of us as failures.
I’m doing my very best to give her the nutrients she needs to thrive.
Even if that means the tube.
And for that, I’m thankful.