The Roman Blog: EGD, CMC, EE, NG, ML, DME

Acronyms. Part of the joy of immersing yourself in a new field of study is all the acronyms that go along with it. Sometimes they make communicating easier (you'll see what I'm talking about) and sometimes they just confuse you. EGD = Esophagogastroduodenoscopy; CMC = Children's Medical Center; EE = Eosinophilic Esophagitis; NG = Nasogastric; ML = Mililiter; DME = Durable Medical Equipment. 1. Esophagogastroduodenoscopy. This is an endoscopy of the esophagus and stomach up to the duodenum (the opening to the intestine). Cole Reynolds had an EGD last Wednesday to rule out medical issues causing his lack of interest in feeding. 2. Children's Medical Center. This is where Cole had his EGD last Wednesday. Dr. Michael Russo is treating Cole. 3. Eosinophilic Esophagitis. This is what Cole Reynolds has been diagnosed with. Roughly what this means is that Cole has an allergic inflammatory condition of the esophagus. It makes it difficult for him to swallow and is quite painful. This explains a lot. Just over a week ago, we were told that Cole would be treated for a feeding disorder at Baylor on an inpatient basis for 30 days to help him get over feeding issues. Joel and I were dreading the hospital stay, yet we had come to terms with the fact that it was necessary to get Cole on the track to eating. We learned about Cole's EE because Baylor required us to rule out GI issues. We were just checking the box. Even the GI doctor thought that we would not find a medical reason that Cole refused to eat. The EGD showed otherwise. Treatment for EE includes dietary modification and medication. We have eliminated the 6 "usual suspects" from Cole's diet in hopes of eliminating the allergic reaction and reducing the inflammation of his esophagus. The 6 "usual suspects" are: dairy, soy, wheat, eggs, peanuts/tree nuts and fish/shellfish. These 6 proteins are the 6 proteins that most commonly cause allergic reactions in people. By eliminating these 6 proteins, 75% of people eliminate the offending allergen. Then, it is a game of trial and error to figure out which of the 6 allergens are the culprit. Cole is also being treated with an inhaleable steroid to reduce the inflammation in his esophagus. In about 8 weeks or so, we will go back to CMC for another EGD to determine if the diet modification and medication have been successful. Please pray that (1) the inflammation subsides (meaning that one or more of the "usual suspects" is the cause of the reaction) and (2) that the offending allergens are only one or a couple of the "usual suspects". If we find that this is not the case, I am not sure what the protocol will be, but I know it isn't good. There are some children with EE that never eat a bite of food by mouth again--they are fed an elemental diet by tube for their entire lives. I have faith that God will be merciful and this will not be where we will find ourselves. 4. Nasogastric. After we found out about Cole's EE on Wednesday after the EGD, Cole was still under-nourished since he wasn't eating. It didn't help that he got a stomach bug over the weekend and vomited all day on Monday. I got the same stomach bug (as did Joel, my mom and Joel's mom) so I can definitely attest to the fact that it was awful and I didn't eat normally until today. As a result, we took Cole Reynolds to the hospital on Thursday to stabilize him. Cole received a Nasogastric tube, which is inserted by wrapping Cole Reynolds up so he can't fight and stuffing a tube down his nose and throat and into his stomach. Ideally, you change the NG tube only every 14 days. However, it is possible for it to be pulled out by little fingers or thrown up by a little guy who is still vomiting from the food that hits his tummy. Cole will be receiving the bulk of his nutrition until his esophagus feels better and he starts to eat and drink on his own. We feed him by his NG tube three times a day and continuously overnight. Cole is still offered breakfast, lunch, dinner and one snack, but since we have a tube backup, we don't have to cajole him into eating more than he is comfortable eating. The pressure on that aspect is off. Our hope is that once eating isn't so painful he will not be so resistant to doing it and then the bad behaviors he "learned" to compensate will work themselves out without the need for intensive treatment at Baylor. 5. Milliliters. Obviously I already knew this word and had seen this acronym in chemistry class, but it takes on a whole new meaning when you are measuring your son's caloric intake in milliliters per hour and flushing your son's NG tube with a certain number of milliliters of water. Joel and I have gotten good at computing the number of calories taken in for a given number of milliliters and determining how fast we should set the pump to deliver the milimeters of formula. 6. Durable Medical Equipment. We now have a DME supplier that brings DME to our house. We have an IV pole. We have a box of bags to hang on the pole. We have a bag of syringes and many other accessories that are necessary to feed our son. We also have a home health care nurse, but as far as I know so far, there isn't an acronym associated with this. Ginger is a phone call away, day or night, if we have any issues. Joel and I are back to night duty with Cole Reynolds. We start his feed before we go to sleep and then we wake up when it is done (between 4 am and 5 am) to flush his line and detach him from the pump. Now, it may seem as if I think the above is awful, and I honestly say that at the moment I think it is. I do not like having to hold my baby down and stuff a tube down his nose into his stomach. I do not like that he has a tube hanging out of his nose and taped to his cheek all day, every day. I do not like that all of this is necessary just so that he can get the calories that he needs to grow. Most of all, I do not like that he has an allergy that makes his esophagus raw and painful. However, I do realize a couple of things. First, I know that God would not give our family anything that we could not handle. Second, I know that God and our family will provide the support we need to make it through whatever is to come. Third, we have a little boy that does not have cancer or some other equally awful disease or affliction that could cause him to die. I am grateful for this blessing. I know there are worse crosses that we could have been asked to carry, and, all things considered, this is probably a pretty light one at the end of the day--even if it hasn't felt that way the last couple of weeks. I am not always the most outwardly faithful person. However, I have a true love of Easter and Holy Week leading up to it. It is not lost on me that our difficult time has come at precisely this time when it is easiest for me to feel that God is present in my life and when it is easiest for me to remember that God allowed his only son to die an awful death for all of us. This week in particular, I pray first and foremost that Cole Reynolds be healed. This is solely within God's power and I believe it is possible. I believe that if he wills it, Cole's esophagus will be healed and he will have no need for dietary restrictions or medicine. If this is not God's will then I accept that and I pray that Cole is allergic to as few things as possible. I pray this because I want him to have as normal a life as possible without having to make special accommodations. I pray that Cole loses as few NG tubes as possible so that we can spare him the trauma of reinserting a new one. I also pray for Cole's appetite to increase and for his acceptance of the formula by mouth so that we can take out the NG tube. I pray for Dr. Russo and anybody else treating my angel. I also pray for patience and peace for Joel and me. Please pray with me for these things. Enjoy a few pics below from the last couple of weeks.