Back from Houston 3 and Renal Scan

We are a little behind on updating everyone but here is the latest news.
On Oct. 4 we took Peyton to JCMC for his renal scan which turned into a disaster. First they didn't even have the doctor's order for the procedure so I had to drive back over to Dr. Wattad's office and demand it on the spot as we were 30 minutes away from his scheduled scan.
Once we got him checked in and back to the room the first step was to try to get an IV started. They were completely unsuccessful. We couldn't get the scan because nobody in that hospital could find a vein. He was turned into a little pin cushion. After 6 hours and no luck we gave up and told them we would just let Shriner's schedule down at the children's hospital in Texas it if they would. We were so discouraged and exhausted.
I called the lady that handles outside procedures at Shriner's and she is a wonderful person. She goes totally out of her way for us every time I ask her for anything. She is always willing to help. She said it was no problem and to bring my doctor's order with us when we came down there and she would take care of it.
So we left on Sunday, flying out of Nashville, and stayed through this morning. The local Shrine temple provided tickets and they drove us to the airport and picked us up. They were very nice and it worked out well. It was just a LONG trip. We prefer Knoxville airport but the tickets were free from Southwest Airlines and they only operate out of Nashville.
We had to stay in a hotel this time, because the parent rooms were booked up. On the first day - Monday - Peyton went to therapy and orthotics and they immediately got started on new AFO's and splint adjustments. They said that Peyton is continuing to make good steady progress and looks great! We took the order for the renal scan to Laura and she was able to get the scan scheduled for Wednesday morning. Tuesday was pretty much the same routine - more therapy and Peyton is learning to use his hands to play! He will raise his arms to touch the toys you put in front of him and will even pop bubbles with his arms too! He is doing really well learning how to sit up by himself and the therapists really want us to work on that between now and the next time he comes back. He is so smart - even though he doesn't have the strength to completely raise his arms up, he will compensate by arching his back or rolling to the side and throwing his arm out and over. He also will thrust his body around in his bouncer to make his toys shake around and then will stop and watch them move until they quit and then he thrusts his body more. It truly amazes us when we think of how far he's come. The lower extremety doctor saw him that afternoon and told us he was setting up an appointment for Peyton to see a kidney doctor there in Houston from now on so we don't have to fool with it anymore. We were so relieved. He told us he wants Peyton to wear a hip splint to line his lower body up. His hips and legs kind of sway to the right and that needs to be corrected. It is something he will only wear while sleeping. He spoke to the orthotist and they took a mold Thursday of his lower body. The splint will take 3 weeks to make. The doctor also got the appointment for the kidney specialist lined up for 3 weeks from now so that we can get everything at once. So we will return to Houston on Oct. 28-30. It will be a short trip but Brady's birthday is Halloween and we just have to be back home. The doctor also told us he believes his left hip is dislocated - he is more sure now. And his right knee is internally rotated. So not only is his left knee not in the right place but his right one isn't either. We can't predict right now what they will do for that other than therapy. We just have to wait and see when the time comes for him to stand and maybe try to walk. But it's a good thing we found out about that knee because we had been told to bend it straight back like a normal knee and I thought something was wrong with that - it just didn't feel right.
So Wednesday was the renal scan which was SUCCESSFUL!They were able to get the IV started and it only took 2 sticks. They had to insert a temporary foley catheter to keep his bladder emptied during the scan. They ran saline, lasix, and a radioactive injection through the IV. One thing of concern during the procedure was that even though he had the foley cath, his bladder never emptied. The nurse had to manually draw the urine out with a syringe. His bladder was huge on the TV monitor. We don't know the results yet but the nurse did say that his right kidney retained some of the radioactive stuff so that means it is not functioning 100%. We don't know how bad it is, or if it is still within normal limits. The report should be in this upcoming week and Shriner's is supposed to call us. Basically the scan is accomplished by watching how fast the kidneys process the radioactive stuff and passes it into the bladder. It is a timed 1 hour procedure. They take pictures of the different stages thoughout and how the stuff empties from his kidneys. The injection is radioactive so that the machine detects it as it moves through his body. I don't understand nuclear medicine enough to explain it any better. But we watched a TV monitor the whole time that showed his kidneys and bladder glowing white from the radioactive stuff and then eventually his kidneys became darker and darker as the stuff was passed through and then his bladder stayed bright white and grew huge. But the right kidney never got as dark as the left. Some of the white stuff remained which means there is decreased kidney function. He did great - slept through most of it and was wore out the rest of the day.
Thursday we went back in for his hip splint mold - which was MESSY!!! He was covered in plaster - it was even in his ears. He also went for more therapy and they took measurments of his joints but we haven't compared them to last time yet. We're sure he has made tons of progress. We saw the upper extremity doctor at the end of the day and she just said to keep up what we're doing because at this point she does not see any need for surgeries until he is not making any progress at all. She is always so positive and sees so much potential in Peyton.
We also picked up his new AFO's which are significantly larger than the last pair - he is really growing!
I gave a note to the therapists to give to the pediatrician before we left. The pediatrician is handling the renal scan results when they come back in. We were still pretty concerned that his bladder wouldn't empty during that procedure and wanted to be sure that she knew about that incident. It just struck us funny because also on the MRI they did of his spine where they originally found the hydronephrosis of his kidneys, they mentioned that his bladder was markedly distended to the level of his kidneys. That means it was much larger than normal. We are thinking there is something wrong with his bladder that is causing the problem with his kidney. The specialist here at home mentioned something about a neurogenic bladder when we went for that consult a few weeks ago. He said that he didn't think that was it so we never thought anything else of it until now. After I researched it a little more - it sounds like a possible match. I won't go into detail with what that is - for those who don't know you can look it up and read about it. I have turned this blog into a novel already.
We flew home early this morning. We didn't get in from Nashville until late this evening though. We are really exhausted and so happy to see Brady! Morgan had to leave for her dad's before we got in so sadly we don't get to see her until Sunday.
As soon as we get word from the doctor at Shriner's I will post a new update.