A year ago Ellie had surgery to have a Nissen Fundoplication (I'll call it a Fundo for short) and a Gastrostomy Tube (G-tube) placed. I explained all about these in
this post. At the end of June Ellie started vomiting after her feedings. This was concerning because Ellie is not supposed to be able to vomit after having a Fundo. We know that she does not protect her airway and aspirates when she swallows so we can assume that she is unable to protect her airway and is at risk for aspirating every time she vomits or spits up, hence the reason we did the fundo in the first place. Her GI doctor ordered some tests that confirmed that her fundo had broken down, or come undone. We made some changes to her feedings to account for this and tried to prevent further vomiting but ultimately we knew we needed a long term solution. So two weeks ago I met with a surgeon about redoing the fundo, which is a much more complicated surgery then doing a fundo the first time. With him not familiar with Ellie or her history and not understanding trisomy 4p and CdLS very well (they both characteristically have extremely severe reflux that does not resolve with age) he didn't feel like it was necessary to redo the fundo. I was in tears as I tried to explain that my greatest fear was that she would start aspirating again and we would be right back where we started: on oxygen and with damaged lungs. He wanted to wait and watch because other than a little throw up she seemed to be doing fine and it might not even be a problem having it undone. I disagreed and wanted a second opinion. Fast forward a week and Ellie got sick with the rest of our family. She was on extra oxygen and had increased coughing and secretions like she always does when sick. Only now, anytime she coughed too hard she would vomit. After vomiting a couple of times it became apparent that she had aspirated because her respiratory status deteriorated quickly. Soon she was requiring more oxygen then our machines are capable of at home and she was showing signs of respiratory distress. She was admitted to the hospital with what was confirmed to be an aspiration pneumonia. I hate to say I told you so, but......
They started her on antibiotics and we hoped to be able to wean her oxygen down and get her home quickly. One day turned to two, which turned to three and then four and now we are on day 5 with very little progress on weaning her oxygen (still at 50% FiO2 when baseline is room air during the day for all you nurses out there). It has been decided that she definitely needs to have the fundo redone, but her lungs are not in good enough shape to go under anesthesia right now, so the solution is to put in a GJ tube to stop the vomiting/aspirating while we give her lungs time to heal before taking her to surgery in 6 weeks or so. So what is a GJ-tube and how is it different from a G-tube?
A GJ-tube, short for Gastric-Jejunal feeding tube, goes through the abdomen into the stomach in the exact same way as a G-tube. In Ellie's case since she already had a g-tube they were able to put it in through the same stoma, or site. The difference is that while a G-tube ends on the other side of the stomach wall and feeds directly into the stomach, a GJ tube has a longer tube that is advanced past the stomach into the second portion of the small intestines, called the jejunum.
This has to be placed either with a scope under anesthesia or in interventional radiology to verify correct placement.
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| Ellie being prepped in Interventional Radiology |
The GJ-button is similar to the G-button, but is slightly bigger since it has two ports: the Gastric port which empties into the stomach and the Jejunal port which empties into the intestines. The G-port is used for giving medications (since most medications are absorbed in the stomach) as well as decompressing or venting the stomach. The J-port is what Ellie's food will run through.
While caring for and using a GJ-tube is similar to a G-tube here are some of the differences. You can give bolus feedings (giving several ounces over a short period of time as if they were drinking a bottle) through a g-tube, but with a GJ-tube you must give slow continuous feeds. This means Ellie now has to be hooked up to her feeding bag 24 hours a day. While we have been able to replace her g-button as needed at home, a GJ requires a special procedure for placement. So if it becomes clotted (which they are prone to do) or dislodged it means going to the hospital to have it replaced. While a GJ clearly has it's disadvantages, the benefit of having it is that we are bypassing the stomach, therefore keeping it empty, so that Ellie won't be refluxing and vomiting her food. Some people chose to use a GJ tube as a permanent solution, but after a lot of thought and consideration we still feel very strongly that it is going to be best for Ellie if we redo her fundo. So if all goes according to plan (which it never does) then we will get Ellie over this pneumonia and get her lungs in tip top shape for surgery in 6 weeks. After the fundo is redone then they will change the GJ tube back out for a G tube and we will hopefully get back to where we were before this whole fiasco started. In the mean time we just hope we can get her oxygen levels down so we can go home.
