WARNING- This post contains medical details and may not be suitable content for all readers.
Many of you have been following Casey since the beginning. For those of you that have not, or anyone just wanting a refresher, I am going to give some background of how we got to where we are today. Again, this post is going to contain a lot of details that the sensitive readers may not wish to read. Continue reading at your own risk.
Casey was born with out the ability to gag, suck or swallow and had SEVERE reflux/GERD. In order for Casey to be able to get any type of nutrition she under went a surgery when she was 1 month old. This surgery placed a gtube and fundoplication. This was a routine procedure and was expected to last about 2 hours. Everything that could go wrong, did go wrong. It was more than 8 hours later before we were able to see Casey again. The gtube was placed so that she could get food directly into her stomach without needing to use her mouth/swallow. And the fundo was done, but never tight enough to stop or greatly reduce the amount of reflux. It reduced it some, but not much.
Since the fundo was not tight enough, we were never able to feed Casey more than around an ounce an hour. This is not much, a typical can of soda is 8 ounces. The forst 2 years we were not able to go over 20cc (30cc is 1 ounce) and over the past couple of years we have been feeding her at a rate of 40cc an hour. In order to get her enough food so that she is not starving and able to grow some we have to do what is called continuous feeds (she is hooked up to a feeding pump almost around the clock).
As Casey grew her chest became mis-shaped (sometimes referred to as barrel or pigeon chested- basically very narrow and sticks out front and back instead of wide). As Casey’s chest changed her gtube no longer sat flush against the inside of her stomach. It started before she was 2, and we noticed the gtube leaked. We did our best to deal with it and keep as much of her food and medicine inside her stomach. The leak continued to get worse and worse (as did her chest). In 2009 we noticed in addition to food leaking, she was bleeding in her stomach as well.
Casey had an endoscopy in late 2009 to determine the cause of the bleeding. At this time we learned that the balloon on her gtube was rubbing the inside of her stomach. The tube placement made it so that it was below her ribs on the outside of her skin, but then went up at an angle underneath the rib and into her stomach. This angle rubbed a lot and over time caused an ulcer along her stomach wall. Certain and/or frequent movements can cause this ulcer to bleed. Blood in your stomach can cause a lot of nausea, pain, and digestive issues. Since the bleed was not constant and the risk of surgery to move the gtube was so high, we were sent home with medication to help with the side effects of the bleed. We found ourselves back in the hospital only a few days later with a collapsed lung as a result of intuabtion for the endoscopy. We spent a month in ICU trying to get Casey’s lung to open back up. We went home with bipap, oxygen and all kinds of respiratory issues. After a few months at home Casey was able to get her lung opened back up and she was able to stop using bipap every night. Now she uses bipap when she has pneumonia or any other pulmonary complication.
We have been dealing with the leak and the bleed for many years. Each growth spurt causes Casey’s tube to go further and further under her ribs. The surgery to redo it is a huge a risk, so we have been doing everything in our power to make it work. Over the past 6 months Casey has started having frequent pain issues at the gtube site. They started out every now and then and have been getting more and more frequent. The past month has been really bad. Casey is in a lot of pain and the gtube is with out a doubt the cause (or at least the main cause). We can take the tube out from time to time to give her a little break, but in order to eat and get her medication we have to put it back in. The leaking has caused other issues with seizures as well. Since she has not been able to keep all of her medications in place we have seen MANY more seizures over the past year (even with increased dosing).
We have not been able to manage Casey’s pain anymore with Tylenol or Vicodin. We can not give her ibuprofen since it can irritate GI bleeding. For the past few weeks we have had to give Casey morphine in order to help keep her pain under control. Sitting up, or putting pressure on the stomach in any way, seems to be the worst. We have had to cancel many therapies, dance, etc. just due to her being in pain and not able to sit in her wheelchair.
The gtube issues have gotten to a point where we can no longer put off surgery. We could do with leaks, we could deal bleeding, we CANNOT deal with pain. There is not reason for her to ever be in pain like this. We spent the past week talking with many of her doctors (Casey has quite a few that all contribute to her comfort and care).
We have come up with a plan and it is going to be a really hard procedure and recovery. Even minor procedures (like an endoscopy) are risky and can cause a lot of issues for Casey. This will be the first major surgery she has had in many years. The last major surgery she had was her feet when she was only 18 months old. This is a big deal, and very scary for all of us.
The surgeon will go in and close up Casey’s gtube site. By closing the site we will no longer have any pressure against her ribs. We still need to be able to feed her however. We talked about moving her stomach and redoing the gtube, but this would be VERY hard on Casey. All of the nerves that control the stomach function could potentially stop working, and all of the surrounding organs and tissues may have issues as well from moving the stomach. The surgeon felt that with Casey’s chest, size and complex anatomy that the only way that she would be able to redo a gtube would include removing her 2 lower ribs (very painful). That was not an option for us. We could not put Casey through that and the recovery would just simply be too much. Our second option is to close the G and instead place a J (not to be confused with a GJ). A G tube goes directly to the stomach; a GJ goes into the stomach just like a G, but has a cable that then runs out of the stomach and into the jejunum; and a J tube bypasses the stomach all together and goes directly into the jejunum.
The stomach still produces waste and there will still be drainage into the stomach. The stomach needs to be able to empty this waste, and if the digestive tract has issues sometimes people use G tubes to drain instead of feed. Also, there are some medications that can not be given in the J tube for absorption. We had a GI series done on Wednesday and Casey’s stomach is emptying- very good news. We also checked all of her medications and they can be given in the J. Some concerns people have with a J vs a G is that you can not do large/fast feeds with a J. People that have a J tube have to be on continuous feeds- no big deal, we have been doing that her entire life. A J tube can take 60-90cc and hour. Some people with a J tube have issues with the ER staff not being prepared to deal with their needs. The ER already freaks out when we come in with Casey with all of her other needs, so we can handle this one too. The jejunum absorbs things much slower than the stomach. As long as we keep a close on eye on her weight and intake we should not have any major issues. If at anytime we do need access to her stomach (to empty or to give meds that can’t go in the J) we will have to place an NG tube (from her nose to her stomach). These can cause calcification along the esophagus and can interfere with the nasal airway. Casey already has calcification in her esophagus from frequent reflux and suctioning. We hope that our need/use of an NG will be limited and rare.
Casey is scheduled for the first week in April. We hope that she will be back home by her birthday. As long as the procedure goes as planned and she does not have any respiratory complications we think being home before her birthday is very likely. Until she gets into surgery though, we just have no idea how well she will do.
Many of you have already asked what you can do. We will update here as often as we can during the procedure and recovery. Casey can use all the positive thoughts, prayers, etc that you all can manage. This surgery is necessary, but it is not going to be easy. The day of the procedure they only allow 2 people in pre and post op. When she is recovering in her room she can have visitors. Or, if you are not local, you can send her a card. The hospital offers virtual cards as well- fun, easy and free. You can always sign her guestbook. We do read all of the entries to her. She will likely be in the ICU where they do not allow flowers, please do not send her any flowers or plants.
This will be the best place to get the latest updates directly from us. We have a lot of family and friends that all care deeply about Casey. We can not call all of you with details. Please help us by checking here first. We will posy as often as we can.