When her GI doctor came to see her, Anthony and I explained how she has been since she was discharged. She wasn't tolerating her feeds well, she was still refluxing and had two clear aspiration events.
In talking with them they decided that its important for us to protect her lungs and improve her daily living. They had warned us in her last admission that down the road she could potentially get a more permanent feeding tube called a G tube. The Ng tube that goes in her nose and down her esophagus into her stomach is usually only meant to be a temporary measure. They are a culprit for infection and can cause irritation and inflammation in the nose going down to the stomach.
The decision was made that she would be getting a more permanent feeding tube. The only question was what kind would she be getting. There are a few different kinds, and in her case she has three options which I will get to in a minute. One of the things they decided to try was a drug for GI motility.
"Gastrointestinal (GI) motility refers to the movement of food from the mouth through the pharynx (throat), esophagus, stomach, small and large intestines and out of the body. The GI system is responsible for digestion." -UC San Diego Health System GI motility specialists.
Because she vomited 1.5 hours after a feed the other day, they suspect that things aren't moving through her digestive tract like they should be. The drug they put her on to help her motility is erithryomycin, which is actually an antibiotic. It is used to help move things through her digestive tract, apparently it stimulates the gut. They give it in very small doses so it is very very unlikely that she would ever build up an antibiotic resistance. This drug is apparently much safer than some of the older motility drugs they have, which can cause neurological side effects.
This drug is a trial for her to see if it improves her symptoms. Depending on how she does with her feeds while on this drug will determine what kind of feeding tube they decide to do. If the drug works for her she will get a G tube. If its not working she will get a G-J tube. And her third option is to get a G tube with a Nissen Fundoplication.
A G tube or gastrostomy tube is:
"A gastrostomy feeding tube insertion is the placement of a feeding tube through the skin and the stomach wall, directly into the stomach." -Neil K. Kaneshiro, MD
A G-J tube is:
"A G-J tube is a single tube that passes through the abdominal surface, into the stomach and down into the second part of the small intestine (the jejunum)." -Boston Children's Hospital/ Harvard Medical School
A Nissen Fundoplication is:
"During fundoplication surgery, the upper curve of the stomach (the fundus) is wrapped around the esophagus and sewn into place so that the lower portion of the esophagus passes through a small tunnel of stomach muscle. This surgery strengthens the valve between the esophagus and stomach (lower esophageal sphincter), which stops acid from backing up into the esophagus as easily." -WebMD
There are obviously risks and benefits to each. Including some being major lifestyle changes for us. I mean tube feedings in general are a huge lifestyle change especially when you are looking at them more as a longer term thing than just a few weeks. Right now she gets what's called a bolus feed which is run over a short period of time in intervals. So for Reagan she gets 4oz of hypoallergenic formula slowly over the course of an hour. Her feeds are every 3 hours starting at 6am and ending at 12am.
She can also have continuous feeds, which are given very slowly and continuously over the course of a 12 hour period, or 24 hour period. So if she has continuous feeds she will be connected to the feeding pump for 12 or 24 hours. If she still doesn't tolerate her bolus tube feedings she could be switched to continuous feeds.
If she gets the G tube she will most likely get bolus feeds. If the bolus doesn't work she will be switched to continuous feeds. If she gets the G-J tube her only option is continuous feeds.
If she gets the Nissen Fundoplication with her G tube (which I am not I am not fond of) there are some yucky side effects. If she ever gets a stomach bug and has to throw up she could have difficulties and will retch. In my research I found out that the surgery is never undone, it is permanent, so any side effects she has from it will be life long. Another side effect is it can loosen and she would need to have another surgery to repair it. It also isn't always effective to stop reflux from coming back up.
As you can see we have a few options and it's a bit overwhelming.
We were hoping she would have her surgery today to place the tube, but as the nurse said "GI needs to get their shit together and come up with a plan". There is a chance that could get together and she could have surgery today at the end of the day. But it will most likely happen tomorrow or Wednesday. There is a chance that if they are too busy to do the surgery she will have to go home and come back when they can schedule it. But it is most likely gonna happen over the next couple of days.
She is having the tube placed for many reasons. Mostly because she refluxes up and aspirates on it. But she also has Anatomy abnormalities of her throat and airway that prevent her from feeding by mouth and aren't going to resolve any time soon. Placing a more permanent feeding tube is her best option. It also can be removed very easily at anytime her team of doctors decides is best for her.
So right now we are waiting for GI and the surgeons to come up with her schedule. I hope this explains it all well. It can be very confusing. I will update when I know anything.
In the mean time here is a pic of the Mayor of the 11th floor from this morning...
She was referred to as the Mayor of this floor this morning by one of the nurses because all the nurses and doctors know her and come to visit her and play with her cause she is so darn cute. Also whenever we go for a walk we literally have to stop ever few feet cause someone wants to say hi to her and talk to her from staff members at the hospital to other kids and parents! She is very popular her. Mayor Reagan Jean!! Haha
No comments:
Post a Comment