Hello. If you are reading this blog, you are family and friends of Felipe. Thanks for stopping by. He has gone through quite a bit the pass couple of months and to make sure that everyone is up to date, I've created this blog to keep everyone informed. Check regularly, I will update it frequently w photos and health updates.
Felipe was born with two medical issues. Intradural lipoma and a hydroenphsis of the left kidney. Lets keep things simple, this what I know, but feel free to google to your heart's content. Intradural Lipoma: he has a fatty tumor that grew and pressed against the spinal cord. We didn't notice any delays in his development. We fortunately found out very early in the process bc the fatty tumor looked like a large love handle at the top of his booty. On 10/7 and 10/8 he had surgery to remove 10% of the tumor. Why not all of it?! only a part of it had to be removed to get the spinal cord to fall back into place. And with so many nerves and possibility of nerve damage, the safer course was taken, just to remove enough to make him better. Why not leave it in? If the tumor was left in place then as Felipe grew, his spinal cord would become more compressed and he would lose his lower extremity function, causing irreversible damage
Surgery was successful but he did loose his lower extremity sensation and function, temporarily. Before surgery he could sit on his own, crawl and was starting to try to stand up. However, after surgery, he barely felt pain, couldn't feel his legs, couldn't sit up, roll over or crawl. Over a week in the ICU he started to twitch his right leg and regain sensation. The final determination was that he has "spinal shock". Basically, the spinal cord had been pushed against by the tumor for over 8 months that once it was given space to float back into place, it swelled up. So once the swelling goes down, he should return back to how he was before the surgery. In the meantime, we need to work his muscles until the body makes a full recovery. Felipe was in a rehab center with physical therapy 5 times a week. And Occupational therapy for 3 times a week. He was released to home 11/7.
Coming home was great but the physical therapy was not the same when we arrived home. Visiting nurse service took a while to send out a physical therapist and when she did come, she wasn't specialized in pediatrics or in neurological disorders. I opted to make the trip to Hospital for Special Surgery for physical therapy. Additionally, Felipe, having not being able to move his feet, now has, "drop foot". basically his feet are curving downward since the muscle haven't been moving. He has been measured for a foot brace and we currently have a specialized stroller on loan from the hospital.
Felipe has progressed in many areas. He is back to crawling, siting on his own and trying to be as active as possible. While he does crawl and sit, its clear that he favors his stronger side, his right. His left leg is slower in getting function or sensation. We were told by the neurologist that it will be a 6 months to 1 year recovery time. Our doctor assures us that Felipe has all the muscle movement needed to walk, the only thing that needs to be straighten out (forgive the pun) is his feet.
As for this kidney, Felipe was born with hydronephosis, basically one kidney is dilated. Picture a balloon, its like when you hold on to a portion of the balloon, the rest of the balloon looks thinned out. So since the one kidney retains urine longer, despite functioning well, it has kept the tissue of the kidney stretched out and dilated. eventually this can lead to kidney damage. Initially Felipe was scheduled for surgery on 7/31. however, since Felipe does nothing in a simple matter this surgery was cancelled. Felipe was on the operating table under a preoperative scan, when the doctor noticed that he has a duplex kidney. meaning, instead of having the left kidney function as a whole, it is divided into two sections. The next thing to figure out was how functional are these segments of the kidney.
On 11/22 Felipe underwent a scan which showed the doctor that the kidney, both segments are functioning well. Had any part of the kidney not worked well, the surgeon would have removed it to prevent any damage to the rest of the kidney. So now the sole focus is on the UPJ obstruction. The reason why the kidney is dilated is that Felipe's tubing from his kidney to his bladder is not formed properly. This will be repaired on 12/18.
So Felipe is schedule for surgery December 18, 2013. As always, we welcome prayer on behalf of Felipe. See you tomorrow for another update.
No comments:
Post a Comment