Well we should have received results on the C-diff culture today, but apparently the stool sample was not in the proper container or on ice when it was brought to the lab. Another nurse came out to the house yesterday afternoon to get another sample so it will likely be Tuesday now before we hear any word. In the meantime, Elias’ mucus fistula continues to dump out massive amounts of drainage. Even with a gauze covering it his clothes still get wet and we are changing more frequently so the laundry room is getting quite a work out with his clothes. We have not given him his antibiotic the few nights because he was causing him to vomiting shortly after we would give it. He has not done that these last two nights. Now the doctors have to figure out is it because he is reacting to he antibiotic or is the C-diff contributing. Until we know about that they are reluctant to make a move, but the longer he goes without the antibiotic the higher risk for another UTI. Ah the wonderful vicious cycle. It has been discussed that if a change is made it would likely be to Bactrum, which is and was a medicine the FA doctors have asked in the past not to use because it is a marrow suppressant. However, Dr. Mehta ( Elias’ BMT doc) feels that since we have tried several other drugs without success that we are really left with no alternative. Fortunately Elias’ counts are stable enough that they would monitor him for signs of dropping a little more frequently and make the decision to discontinue it if he does show a certain level of decreasing numbers. It is also possible that a surgical intervention may be in the picture given the rapid occurrence of so many UTIs. Our next VCUG which is not scheduled as of yet after the failed attempt a few weeks ago would help give information if it is a worsening kidney reflux issue or a resistance issue to the prophylaxis medications causing them. Whatever the outcome we certainly have a bit of a hurdle to overcome and sift through to achieve the results we want.
This week we meet with the ENT ear specialist for our initial consult. He will be sharing a little bit about his long term thoughts for Elias in terms of surgical intervention and they things we will need to do up to that point. We are also going to discuss further with him the hearing aid issue and see if he has any pull in getting this ever challenging item moving forward. We are anxious to hear all that he has to share. Tuesday of course is the Occupational Therapy assessment and that should be light and easy. Other than that we are going to attempt to do a little light Christmas decorating around the house. Nothing too elaborate, but we would like for Elias to enjoy the spirit of the holiday. Things were so rocky last year at this time he was pretty much confined to bed and sick so often he never got much opportunity to experience the decorations. Besides this year he is more alert and aware and should really enjoy the lights, colors and decorative extras. We are looking forward to seeing his reactions to all of it.
We hope you had a chance to view the photos we posted earlier today. That is not all of them, but all we have had time to get prepared for uploading to the site. We work on them a few at a time and get them up as we finish them. We have about 40 more photos so watch for those going up. We were very happy with some of the shots we got of Elias. There are certainly some great photos of him with the most expressive faces! We will try to do some video at some point, but that process to get them online is even more time consuming. Here is to the anticipation for a positive productive week. Hopefully we will even make some more progress on the nursing staffing. We hope everyone had a wonderful holiday and that the rest of your season is full of blessings and hope.