We had our scheduled Spina Bifida clinic today. It was terrific to go to the hospital for a planned appointment AND have it go unexpectedly well! It definitely seemed more like a visit than the hospital trips we are used to having.
We started the day with a renal ultrasound to image his bladder and kidneys. When we had this imaging done in January, there was some swelling in his left kidney that was worrisome to his urologist. He was concerned Thomas may be having some reflux from his bladder up into his kidneys, which could be causing kidney damage (this is VERY BAD!). Also, any UTI or bacteria in his urine, would be much more dangerous if he had relux since we would not want any infection presenting in his kidneys. However, the ultrasound showed not only had his kidney stopped swelling, it had actually gone back to normal size and shape. This was wonderful news to start our appointment day.
Next up was a VCUG (voiding cystourethrogram). This test is used to show if he is having any of the 5 stages of reflux from his bladder back up the ureters into his kidney. While stage 5 is the worst, we really would want to have no reflux. They insert a catheter to drain his bladder, then use that same catheter to fill it back up with a dye that they can see on the x-ray. While filling his bladder we watch in real time on the screen to see where the fluid goes. I was butterfly-in-the-stomach nervous for this one. Since we knew his kidney had demonstrated some swelling in previous months, I figured that he was going to have some mild reflux and we would have to start some daily prophylactic antibiotic meds. While, of course, we would do this if it was needed to save his kidneys, daily antibiotic use is not really on the list of things I would like to have my child doing. Watching his little bladder fill up on the screen and desperately not wanting to see the dark dye veer off of the main body of the bladder like octopus tentacles, I held my breath. The very nice Radiologist Assistant was making small talk about how good Thomas was being, but I didn't pay much attention and mostly tuned him out. I already know how awesome my kid is, we don't have to discuss it right now...talk to me about if I am seeing this correctly!! Finally his bladder was full and we just waited, nothing happened, he didn't pee out the dye, but he also didn't reflux it at all!!! YAYYYY!! Kidneys are safe for now and we don't have to change anything we are doing!! Another great appointment!
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| Thomas waiting patiently for his VCUG to start |
Then we headed across the street to our main clinic appointments. The Physical Medicine doctors were first and if you read the post from last time (post is "OUR LITTLE SNOWFLAKE") you might remember that it was a tough appointment. We still weren't sure if he could see very well and his movement had decreased dramatically. I left that appointment feeling very defeated and worried that his challenges would be quite difficult. This time, though, they were basically jumping up and down with how well he was doing. He was kicking both legs (moving at the hips AND knees) and even some ankle movement in the right leg. They said phrases like, "WHEN he starts pulling to stand" or "WHEN his mobility increases" basically music to my ears! They literally could not believe it! Turns out once you can breath, everything else is a little easier!
Next we met with the Urology Nurse Practitioner and she just confirmed all we had done in the morning at the main hospital was good. We don't need to increase the ditropan or cathing and it is safe to let him sleep at night and not have to wake him up to cath in the middle of the night (this was up there for the best news of the day as far as I am concerned - mama needs her sleep!!!). She also let us know the results of the formal urodynamics that we had done last week. When we had this test done in January his bladder was only holding 15 mL, this time, it held 120mL and leaked a bit at 70mL. This is much more age and weight appropriate and tells us the ditropan is doing it's job. Then the Developmental Pediatrician came in and was also blown away by how different Thomas is since surgery. Last time, he was concerned about the lack of weight gain and labored breathing. Well, Thomas has picked back up on the weight gain and is almost back on the curve of what they deem to be "normal" so he had NO CONCERNS!!! Normally we leave appointments with new things we have to add to Thomas's repertoire to adjust or support his spina bifida diagnosis, but today we left with instructions to increase tummy time and put toys out of reach so he can start to move around more.....that's just normal baby stuff that all parents hear! It was wonderful to get 'typical' instructions for a change! And on top of it all, Thomas was the belle of the ball. He smiled and coo'ed at every doctor that came in. They tried to upset him so they could see how much he moved when he was really mad, but he would not get upset, it was really quite entertaining. He would just look at them and giggle when they would poke him or pinch him. He just was the most content guy and everyone that came in contact with him got a smile today. He was the favorite patient of the day (doctors words, not mine) like he is everyday (my words)!
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| Thomas loving the attention and everyone oohing and aahing over how well he is doing |
We were home in record time from a clinic day! Next appointment is Thursday and it is back to the OR to be scoped by ENT again to see how his airway is still healing.
