This week we had appointments in Kansas City at Children's Mercy Hospital. Thursday we had lab work first, then a sonogram in Radiology, a VCUG, and lastly we met with the Nephrologist Dr. Vandevoorde (Kidney Dr.). Then on Friday we had a short day with only one appointment with the Urologist (Dr. Gatti).
Overall, we had a good few days of appointments. We got a lot of information. After getting the lab work back we found that Kale will need to be started on a renal vitamin and also an iron supplement. They are going to continue his prior meds to help him be able to get stronger before he hits his next growth spurt and to keep preventing the infections he would be prone to getting in his kidney's.
In the sonogram they found that Kale's left kidney (the non-functional one) has began to shrink slightly. Until this appointment the kidney has shown small signs of growth so it is a slit set back but we knew that if the kidney really was not alive it would begin to shirk until it eventually disolves into the body. They also saw that the uriters between the kidney and the bladder that are causing his reflux were still enlarged. This confirmed that his reflux was still rated about a Grade 5 (the worst it could be). This is why we had to go back this time and see the Urologist.
During our appointment with Dr. Vandevoorde he seemed to be quite pleased with Kale's weight and growth rates. He was satisfied with his breathing (last time we were there he was still on his breathing treatments). Also he was very happy to hear that he was off the bottle and pacificer completely (since 12 and 14 months) and that he is continuing to sleep through the night. Overall he didn't have any major concerns for us he is going to allow us to go a full year before rescheduling our next appointment with him!! This was exciting to us since it is the longest we have ever gotten to go without seeing him!
On Friday when we got to see Dr. Gatti (Urologist) we discussed the options we would have with Kale's reflux. When he was first born and diagnosed with the Grade 5 Reflux the Dr.'s had told us they would monitor him until he was 1 and they had hopes he would out grow the issue by that time. It is common that boys out grow the reflux as they start peeing at a lower pressure, however in Kale's case this did not happen. Erin and I didn't quite know what to expect but the Dr. explained to us although it is still bad, he was no quite ready to schedule Kale for surgery. So what he agreed to let us do was go for the next 1.5 years on the same pace with his meds and he would redo the scan at that time and see what the reflux had done. He wanted us to have him potty trained by that time so that he could see how the reflux does when Kale is holding in his urine. If he is still able to avoid infections at that time then we will attempt to take him of the meds and see if he can still avoid the kidney or UTI's. If so we may be able to avoid surgery all together. If he starts to get infections at anytime the Dr. said we would most likely jump to surgery quickly because Kale's kidneys can't afford to take any hits to them. His total functionality is approx 60% now which is good but that is all from one kidney. So to damage that kidney more would not be good.
All in all Erin and I were happy with our news. We hope to be able to avoid the infections and stay on the positive path that we are going down!
For anyone who has not been to Children's Mercy I will upload some pictures that I took during this visit. It is a wonderful place that saves lives everyday!
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