Rhema never ceases to amaze me at how well she does will all the tests, with the pokes, positioning and prodding. She lays so still and cooperates so well for all the wonderful nurses and tecs. One positive thing noted on the ultrasound was that her colon and intestines looked great; there were no obstructions or impacted areas found. Praise the Lord for a good report on her bowels!
Again, Rhema did so well for this big exam! I watch her with such amazement as she lays there so patient as they place all the multiple probes and tubes…… It is very traumatic for me to watch all this being done to my precious girl….. I stay focused on entertaining her with games, story’s and whatever keeps her focused on me instead on what’s happening “down south of her”. Rhema seemed uncomfortable for only a few seconds during the whole process. It’s really a mixed emotional experience, on the one hand you do not want to see your daughter experience pain, on the other hand, if she does exhibit pain then you know the nerves are functioning properly. Rhema has had three of these tests in her life time, and each time I find myself torn as to what I wish would happen. Do I wish she has pain because that would mean that there is sensation and properly functioning nerves or should I wish she doesn’t experience pain as no one should wish pain on their child? This is what I grapple with each time she has this test.
Anyway, I digress…. the results were not what we had hoped for. It was a triple whammy really. Rhema showed a grade three reflux into one kidney, her bladder was showing multiple spasms and with the last 3-4 months of UTIs on record there is many new changes on our horizon. The recommendation was to begin intermittent cathing every 4 hours and to keep a log on how many CCs we got each time. Also, due to the recurrent UTIs they want to begin a daily low dose antibiotic. Plus, they want to put her on a daily med for her bladder spasms. WOW! Lots and lots of changes….. So, momma went through cathing training with a urology nurse and she said I did really well for my first time. I filmed her instructions on my camera phone as it is a lot of information to absorb and then filmed her cathing Rhema. Then before I left, she had me cath Rhema so she could observe and make sure I knew what to do. Oh, and we asked that Rhema be retested in 6 months, rather than a year, to recheck all of the findings. Our prayer is that we will see improvements on her next tests that may alleviate her having to take all these meds.
This weekend we are working on the spreadsheet or program that we will be inputting the cathing data into and on Monday we should receive our first box of catheters. I, momma, am spending the weekend mentally adjusting to all this unexpected news and trying to wrap my head around how to incorporate this into our daily schedule. Honestly, it’s been upsetting to me….. I know this is just a progression and up to this point, we’ve been given a reprieve in having to do all this…but really, I do not think I’d ever be “ready” to do all this…. I do not even think it’s the actual logistics that bother me. Up to this point, we’ve not had a urological reminder of the nerve damage that exists….we’ve just had the mobility, bowel and shunt reminders to be mindful of…. so adding another issue is just that– one. more. issue. This impacts in a BIG way our daily logistics yes, but it also impacts my mental and emotional equilibrium. I’m not sure I’m making much sense, but I wanted to try to explain our “status” in full, the Big Picture, if you will….
So, this week, we need extra prayers… I need extra prayers…. I need wisdom to know how to do all this. Rhema needs protection over her little body as we begin her new medications that there be no harmful side effects. Rhema needs on going protection as we begin cathing that we do it correctly and that she have peace while we are learning to get a good rhythm down. Pray that in our process we do not introduce any germs into her body as we cath.
We covet all your prayers and know the Lord will guide us, even in this….. Thank you all for your constant support! You all are a blessing and a vital member of our Team….. Keep it up!