I have previously, very briefly, posted about duplex kidney, which was picked up ante natally with my daughter.
Since my last post my daughter has turned 1, and two days after her birthday we attended a hospital appointment with the consultants in the surgery team.
Her left kidney is duplex, the “extra” part has little or no function as was discovered by ultrasound and dmsa scans.
The tube coming from the duplex kidney goes behind her bladder and this is blocked, resulting in stagnant urine sitting in the tube and the kidney. This could result in urinary tract infections being a regular occurrence, however she was placed on the antibiotic Trimethoprim since she entered the world. The dosage has to be increased as she gains weight, however we are the only ones chasing this up. I feel that had we not, then she might have been on too low a dose and might have had a uti. This frustrates me as I feel not enough is being done to look after my little girl, surely a uti in someone so young can be more harmful than in someone of an older age. in my opinion she should have monthly/ two monthly check ups to weigh her and check her dosage however this is not the case.
At the consultants appointment yesterday (10/10/13) we were told what we had been expecting. My daughter would need an operation. They could do not do key hole surgery as there would be a high risk of her losing her kidney, so the only option they have is to do open surgery, this will of course leave a bigger scar. During the operation they will remove the duplex kidney. Hopefully she will no longer need the antibiotics then. She has placed on the (very long) waiting list. I hope that she is able to have the operation sooner rather than later so she will be not aware of what is happening, so she wont be scared, and also we are expecting our second child in March 2014 so it would be a lot easier on us if it was before then.
My daughter will be admitted the day before her operation, and after her operation she will be in for approximately three days. I can feel the tears starting to fill my eyes now as I am writing this. She will have an iv in her hand to give her pain releif, a catheter and a tube coming from the wound to drain any fluids.
I don’t yet think that the full reality has set in yet. The more I think about it the more I realise what my little baby girl is going to go through. She has only just turned one this week, she is so small and dainty and I want to protect her. The thought of not being able to be in the operating theatre with her breaks my heart. I want to see what my baby is going through, make sure she is being treated well and just be there to hold her hand and tell her she is going to be okay. Oh…. More tears!
I would like to know has anyone been through a similar experience? And you can help me, give me advice on what you did to stay strong for your little one? Please leave your comments below