I truly feel so blessed that I don't know how I am about to start my whining again...Sometimes I think I whine because I am inconvenienced, or don't want to do something! But most of the time I really don't like doing these things to Annabel. Her surgery was done on Jan. 8th and we slowly decreased catherization. Just this past summer we were told that she needed urine residuals under 30. Well since her surgery in Jan. for the tethered cord thing she had been urinating very regularly and most of the time 3 times during sleep. (Annabel doesn't like to be wet or dirty, so she makes a noise right before and right after wet/dirty diapers) During her last hospitalization a few weeks ago it was found she had another UTI (only 1st since surgery in Jan.). She also had some sort of respiratory infection that zapped her oxygen and we are still struggling with this mostly during sleep. Her energy level has been great, sleeping well and just a happy funny little girl. I must say I have been enjoying the lack of having to cath her every three hours, worrying about being at a clean facility (restaurants with changing tables), about strangers having to cath her who may not make sure she is clean (I am just extremely hard to please) and the biggest single issue is that what I am doing to her, her tissue and possible introduction to these bacterias.
So that brings me to Tuesday, Feburary 23rd, our 6 week check up post op. I went in to the appointment for the renal ultrasound and appointment right after with Dr. J (urology). She is standing straight up with my help looking so strong and he opens the door and says, Wow she looks great, How is she doing??? I reply, Really well, she has many wet diapers. He says, how many times are you cathing her?.. I reply, NONE and I am loving it. He asked a few more questions and says "NO INFECTIONS????. I reply, Only one and show him the lab results (what the bacteria was, counts, etc.) He looks at me and says, "You need to be cathing her four times daily." He continues that she is a breeding ground for bacteria. I told him after the surgery he residual were low and that I thought as long as they were under 30, that was good. He says she must have ZERO (0) left, that she must be drained.
Here is where I am whining! Families are told each day that they have way worse diagnoses or time left with their little ones. I have time with Annabel and cathing is not that terrible. Yes, I don't want to do this but will. In my heart, I don't think this is best right now for her. I understand his thinking but I just don't want her going through this. I am 50/50 thinking if I don't drain her dry she will be this breeding ground for bacteria, but the other side is that I will continue to introduce (no matter how careful) more bacteria. Because of her history with c-diff, she needs to be on as few antibiotic as possible. This last one that she came home on tears her little tummy up but it has been the only one as of late that she is sensitive to.
I want to say I really like this urologist. He is fairly new to us but he is so much more caring than the last two that she has had since birth. I understand his thinking and now I must deal with me. My last question to him was that I thought that we may not have to cath her any longer if this surgery worked. He said No, that the surgery was to hopefully just slow the progression of this disease, meaning the damage to her kidneys. Maybe I was just too hopeful and heard what I wanted to hear. These are the days I don't like this Trisomy 18 thing!