The beginning of September marked 1 ENTIRE YEAR of no bacterial infections for David. This is absolutely HUGE considering that his longest stretch ever in his life has been 5 months and his norm was at least 1 monthly. We are praising the Lord for this improvement. As I had posted earlier this year, David was able to successfully come off of his prophylactic antibiotic in March of this year finally being officially antibiotic-free for the first time since infancy.
However, after David came off of his antibiotic, within a few weeks he started having severe gastrointestinal (GI)cramping. I started documenting the attacks to find a trend but came up empty. The attacks got so severe, I took him to his pediatrician who quickly referred him to his Gastroenterologist who ran multiple tests throughout June and July. We found out that the normal bacteria in David's gut has overpopulated and backed up through his whole GI system. His doctor thinks that his body got used to having an antibiotic on board to control the population for all of those years, and stopping the antibiotic put his gut into a crisis not knowing how to handle the bacteria population on its own. David is now currently on an antibiotic (Flagyl for you medical people) to get his intestinal bacteria to just below a normal level. Once David finishes this 7 week course of antibiotics, we are hoping that his body will then kick into gear and control the bacteria population on its own.
If David's body is successful in controlling the bacteria in his gut, his immunologist is going to try decreasing his antibody transfusions from once a week to every other week. This is a HUGE step for David and us, and we are excited to be at this point. The goal is to continue to successfully wean down the transfusions with the hope that David's body will now be able to properly produce the antibodies needed to fight bacterial infections. His immunologist is hopeful that David may be officially weaned within a year's time! We couldn't be happier.
On another note, at David's last visit with the immunologist when we discussed this plan, we found out that David's lungs aren't functioning as well as they normally do, but his doctor isn't entirely sure why. David also had strange rivulets of mucous going down the back of his throat. He doesn't seem to be having any drainage from his sinuses, so the doctor is not sure where it is coming from. However, one suspicion is that David's reflux is severe enough that he is refluxing into his oral/nasal cavity causing the mucous trail. In addition, the reflux is then going into his lungs (he is aspirating reflux) irritating the lining of his airway decreasing his lung function. David's reflux is made more severe by the deformed artery he has coming off of his heart that pushes into the esophagus. As a result, he is on a steroid inhaler daily to try to keep the inflammation down. He will be re-checked in October.
So, yes, we are taking a major step forward with the weaning process, but with the decreased lung function and the GI struggles, we have taken 2 steps back. However, we will not lose heart. David is in the very capable hands of our mighty God who is the Great Physician. We are excited to see God's continued work in David's life. He's got some incredible plans in store for strong, resilient David.
 |
| David - 9/2/13 (2nd Grade - almost 7 years old) |