What a rough week and a half! There’s so much to update, so I’ll do it in pieces!Endoscopy
The Thursday before Thanksgiving, Henry had his endoscopy. The procedure and hospital visit went well. We checked in at 6:30am, he went under at 8am, and was in recovery at 9am. We left the hospital by 10:30am! The doctor sat down with us and explained what she saw and gave us some great pictures detailing Henry’s esophagus, stomach, and the beginning of the intestines (duodenum). She said everything looked good. She did observe a small pancreatic nodule at the base of the stomach going into the intestines. She said that this is a common occurrence and doesn’t expect that it is a problem for Henry; however, they will perform an ultrasound of his pancreas tomorrow just to make sure.
During the endoscopy, they took small “pinch” biopsies. The results of the pinch biopsies indicated high levels of eosinophils in the stomach. As many of you may remember, eosinophils are a type of white blood cell indicative of an allergy. We will learn more about what this means when we meet with the Allergist on Tuesday this week.
There were many blood tests performed following Henry’s endoscopy. Of the results we have, everything is ok, but we are still waiting for some results.
G-Tube
The good news is that there is no more G-tube!! But this comes with quite the story! During the endoscopy, Henry’s bard-style G-tube was replaced with a MIC-KEY G-tube. In general, a G-tube consists of a valve (to open the tube for feeding), the stem (which goes into the stomach), and a ball/balloon on the inside of the stomach to keep the G-tube in place. A bard is a more “permanent” tube with a hard solid ball on the inside of the stomach. A MIC-KEY is a “removable” tube that has a balloon on the inside of the stomach that is filled with water and can be easily deflated. We had decided to replace the tube because we had experienced some excessive leakage (mostly when Henry had a cold) and because he had likely outgrown the size of the tube.
We expected to experience some minor leakage the first day or so after it was replaced due to the damage caused from removing the solid bard. However, last Saturday we began to experience excessive leaking from the tube-site. On Sunday, it was so bad that we were having a hard time keeping his fluids in. Given that Henry’s diet consists of 75% formula, this was a real concern. We called UNC Sunday afternoon and were told we could go in for an all-night ER stay or show up at the clinic Monday morning. Since we didn’t feel that Henry was dehydrated, we waited until Monday morning. UNC was great… we didn’t have an appointment, yet never got the chance to sit down before they called us back! The GI nurse practitioner, Lynn, was great, commenting that she was glad “we know Henry so well” and that they “recognize that the parents are the experts.” Wow! I think hell would have to freeze over before Duke would ever utter those words, and even then it would be just a whisper!
Lynn was a great advocate, and after talking with her about Henry’s history, she tried to get the other medical team members to agree to remove the tube. Unfortunately, no one felt that was the best option at the time and that the tube should stay in “just in case,” given the cold and flu season. So, Lynn took out the tube, waited 30 minutes to allow the site to “close up” some on its own, and then replaced the tube. Unfortunately, this attempt did not result in a “better fit” and we continued to experience leakage. We repeated this at home on Tuesday, and again on Thursday, the last time leaving the tube out for 1 hour. Unfortunately, there was little change. At this point, Henry had lost a half pound and his feeding schedule/habits had been completely disrupted since we were feeding him constantly throughout the day to combat what was leaking out of him. We were changing his clothes often (6 or more times!) as he would end up completely soaked several times throughout the day. This also resulted in sleep disruption for all of us since we had to change his clothes/sheets during the night as well. On Friday, we had reached our limit… we called Nannette at home. She was great and was not upset at all that we had called her at home over a holiday! She helped us get in touch with the GI surgical resident and after discussions with both, we agreed at that point that removing the tube was the best option.
On Friday, at 11am, we removed the tube at home and waited! They told us it should take at least 8 hours to close on its own. It’s been almost 2 ½ days since we removed the tube and the site hasn’t quite completely closed up. The leakage is very minimal and we are covering his site w/ some gauze. Henry actually stayed in the same clothes all day today! A first in over a week! We will touch base with Nannette in the morning… I suspect that they will have us come in and possibly place a suture to help the site completely heal.
Although this is a victory, we still have a long way to go! Although Henry consumes enough calories on his own in a day, most of those calories are coming from his formula and he gets about 4 bottles a day. Most toddlers his age are no longer taking bottles. Henry needs to learn to eat more solid foods in a sitting, so that he is actually eating a normal size “meal.” We are still working on spoon feeding, which unfortunately hasn’t occurred in over a week. We will also need to start working more aggressively with sippy cups and open cup drinking.
To round out our week (as “issues” never seem to happen when it’s convenient!), Stewart’s last day of school was Wednesday. He is now tracked out until January! Stewart also lost his first tooth last night! He was quite pleased with the Tooth Fairy’s gift! We had Thanksgiving at my mom’s and got to see some family. Now it’s time to get ready for Christmas! Whew! 
