Tiny Tot's Testing Day

We are so thankful for the many prayers for Arwen during her kidney/bladder testing yesterday. We left at 8am and got done around 1...so it was a long day like we expected. But Arwen did so so so well. Especially for being so young and tired from waking up early. She did have her "moments" but quickly calmed down and was distracted.

Her prelim urodynamics study (looks to see how much fluid she can hold before leaking and measures the pressures in her bladder) from what I could understood from the nurse (I am new to all this bladder/kidney talk lol)  is that Arwen's pressure levels were decent until she hit a volume of 50 and then her levels went very high. During her 1st and 2nd test she never did leak but showed signs of a lot of discomfort between levels 125-140. So the nurse was confused why she never leaked. Then during her vcug the doctor said she did show signs of leaking (which is good i guess?) around 125. So I am still not sure what that all means but the main concern right now is why she is having some much pressure while being on ditropan and cathed. My guess is we will (against my better judgement) have to up her ditropan and cath more often. They do think she has another uti..which could just be from not being cathed regularly lately due to blistered rash and trying to figure out what type of catheter to use. So I went ahead and uped her cathing a little at a time this weekend and am trying like a mad woman to push fluids so that this uti can pass without meds or ng tube hopefully.

Good news is that she doesn't have any reflux in her kidneys even though she has high pressure bladder and doesn't release urine outtake properly on her own! Praise God!
We should know more answers and more goals to work on at her clinic apt the 19th!
Thanks for checking in on little miss and please keep her in your prayers.