Well we have had sometime to digest the findings from Wednesday and still very confused, irritated, and anxious. Unfortunately we will have to wait for a repeat ABR to get any real potential for answers. Even then we wonder, what if yet another results comes further confusing the issue. Of course we have to wait to tag it onto a surgery due to the safety concerns putting Elias under anesthesia. However, the inept ability of the audiology department shined bright again on Friday afternoon. We received a phone call, the automated variety, that simply said to call Children’s Hospital to set up an appointment with your provider, then gave the phone number. Having close to 20 doctors we had no clue what exactly it was for, so we called. It was audiology trying to schedule the ABR. Even though it was discussed and very clearly understood it was done wrong, again. After arguing, literally, with the appointment agent who insisted it could be done in the office we finally got our point across and then the endless transferring began. By the end of the call, no one was able to help us and we ended it with a message to the Colorectal scheduler. How the heck did we end up there? Oh my. Seeing as it was late Friday we of course not heard back from her, but I can imagine we won’t because when she hears ABR she will think we got the wrong person. Not that it matters as it is up to the doctors themselves to coordinate these types of things. It really is up to Dr. Levitt who gets him in the operating room next. The question is will he allow the ABR during the Pull-thru or will we have to wait until six weeks after when the colostomy is reversed? Only time will tell.
Friday was our bi-weekly IVIG infusion. They took the opportunity to do a few extra labs since we were there to follow up on the emergency clinic visit 10 days prior. While the symptoms for the C-diff went away quickly after the flagyl was started Elias as usual start a whole new set of activities. He has had a very up and down week. Dr. Mehta came in listened to him and examined him. At that point in time he was having a good phase, plus he had just awakened from a long nap. She could tell he was a little off, but wasn’t prepared to do much as the symptoms just were not that outstanding. Much of it is respiratory based, so that is kind of difficult for them, especially when he has ENT/Pulmonary following him. This weekend has been miserable for him. We are kind of thinking it may have to do with the change in weather. Both of our allergies are really bothering us, making it difficult to breathe. It is likely it is affecting Elias the same way. Only with him even the tiniest change in his pin-hole sized airway makes for a very bad situation. We just keep an eye on him as always. It’s more exhausting to care for him at the moment as he is in constant need for suction and has the occasional vomiting when it gets overwhelming in addition to his typical cares and meds. It does make it a little challenging, but we have been doing this for almost 2 years now and it doesn’t appear to be changing anytime soon unfortunately. We just make the best of everyday and are thankful to have him with us.