Jan. 4-After no real explanation for the pain from Orthopaedics, we began our journey with Urology. Dr. Ross requested an abdominal x-ray, renal ultrasound, and consult with Dr. Jada Dillner. Rayden is an absolute pro at getting these test, so he had no worries. I am so proud of him for actually telling Dr. Dillner about his pain. He told her how bad it hurt, the exact location, when it hurt and when it didn't. She didn't see anything alarming in his x-ray or ultrasound, and began to lean more toward tethered cord. She requested neurosurgery to consult. After examining Rayden, and feeling the exact location of his pain, she requested a sterile urine sample to send off for culture. Rayden was perfectly still during the urine collection. Dr. Dillner said the dip stick didn't reveal anything so she wanted us to get some blood work done. I went ahead and asked for the special team and honestly thought this was going to be another battle. The ladies asked to just look and they wouldn't stick if they weren't 100% sure they could get it. Rayden agreed, which shocked me! He was so relaxed. He just held out his arm and then started asking her questions about the blue line. She explained his veins and asked for a small needle. He held perfectly still, never cried, or jerked. She got the vein with the first stick!! I commended her over and over because I don't remember that ever happening before! I also praised Rayden for being so brave, calm, and still. I'm so proud of him. Dr. Dillner told us to leave after the blood work and she would call within the next couple of days if anything was alarming. She actually called on the drive home. I certainly wasn't expecting her to call me within the next 30 minutes!! She had received one of the blood test results and it revealed his chloride was high and creatinine was elevated. She said she wanted him to see a Nephrologist because she is worried about his Kidney function. This was very alarming to me. The next day I received an invitation to schedule a nephrologist appointment. The earliest appointment I could schedule was the end of April. I emailed Dr. Dillner, asking her if it was safe to wait that long. She told me to make the appointment and get on the cancellation list. She also said his Cystatin C (a measure of kidney function) is also elevated. Once we do his urodynamics study next week and have more information, if there is anything concerning she would try to get him in sooner. I decided to call the neprology office and ask for an earlier appointment. The receptionist was able to move it up to the beginning of April but nothing any sooner.
From what I can gather, these are the alarming results from his urine and blood samples.
Chloride (blood) should be between 98-107. Rayden's was 111-High.
Calcium (urine) should be between 9.40-10.3. Rayden's was 12.8-High.
Creatinine (urine) should be between 0.3-0.7. Rayden's was 39.3-High.
Cystatin C (blood) should be between 0.64-1.23. Rayden's was 1.06-Elevated.
Absolute Basophilis (blood) should be between 0.0-0.1. Rayden's was 0.1-Elevated.
Absolute Eosinophilis (blood) should be between 0.0-0.5. Rayden's was 0.5-Elevated.
Vitamin D should be between 20-80. Rayden's was 21.7-Low.
Jan. 16-Urodynamics Study
A urodynamics study is a procedure that looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage.
Rayden hasn't done this test since Nov. 12, 2020 (3 years ago). He didn't remember doing it before, so I wasn't sure how he would react to exposing his private area to three strange women. He actually did very well. Dr. Dillner went over a few things while administering the test, but discussed it more thoroughly when the test was complete. His bladder sensation and appearance was abnormal. The detrusor muscle function was overactive during filling but the pressures were overall low. His sphincter muscles are weak as well. This keeps his bladder at low volumes and pressures but leaves the bladder neck open at all times allowing leakage.
Dr. Dillner says Rayden will need surgical intervention to obtain continence. She detailed two options.
1-If we do it now, he will need a bladder neck sling and Mitrofanoff with possible bladder augmentation. 2-If we wait until he is older, he could get an artificial urinary sphincter with possible bladder augmentation. This option is less invasive.
Michael and I agree that these options are too invasive right now. Dr. Dillner suggested pelvic floor physical therapy and medication to help minimize leakage until he is ready for surgery. There is an interaction with his seizure medication so we are waiting for his neurologist to suggest an alternative. In the meantime, she wants Rayden to learn how to swallow pills by practicing with Mini M&M's.
February 26
Dr. Elizabeth Kotzen, Nephrologist, said Rayden's lab tests in January were reassuring. She said his kidney function was normal and his Estimated Glomerular Filtration Rate (eGFR) was 120, which was beyond perfect! There was no protein in the urine testing either. She honestly didn't even know why we were there! She said it is a good idea to repeat the tests once per year because people with Spina Bifida are prone to kidney issues. She told me to keep an eye on his blood pressure. It should be 109/72 or less. If it is consistently higher than 115 she wants me to contact her office. We don't normally receive such great news at doctor appointments. This was wonderful to hear. 💖
