Saturday, August 4, 2012

Kidneys, Surgery & A Home

Can this child catch a break please! In our last update we noted that Elias was found to be in stage 2 kidney disease. Since that post we have completed another study that is considered to be much more accurate. Unfortunately, the results were not positive. Elias kidneys appear to have much more damage than originally thought and they have him now in stage 3 kidney disease. We met with Nephrology (kidney specialists) and learned that essentially both kidneys are functioning at about 50%. In consult with Urology they can still not determine what is causing the failure due to inadequate results from a urodynamics study which measures bladder pressure. The plan we received yesterday was a recommendation for a surgery to do a reimplantation of the ureter which will, if successful, eliminate the kidney reflux issue which contributes to the kidney damage. At that time they want to place a Mitrofanoff for catheterizing his bladder. This will relieve potential pressure also contributing to the damaging of the kidneys. The purpose of this special Mitrofanoff is that Elias' urethra can not be reliably and safely accessed due to issues there. This surgery is expected to take 6-8 hours and will require a 2-3 week hospitalization. He will then come home with 4 to5 tubes from the kidneys and bladder that will need to stay in place for 4-6 weeks (that will be an adventure). We will then return for another 2-3 day hospital admission to remove these and receive training on yet another skill, catheterizing Elias' bladder. Hopefully the Mitrofanoff and need to catheterize will be temporary. With this in place we can repeat the urodynamics study down the road to rule in or out bladder pressure contributing to the kidney issues. While him having another major surgery is not what we want, the reimplantation is 100% necessary. The Mitrofanoff, while in the end may prove to have been unnecessary, the doctor's logic is very strong. We are already going in first off, so combining procedures helps Elias. Secondly, without definite proof bladder pressure isn't an issue we can not afford to wait and see. Not to mention the Mitrofanoff affords the opportunity to more reliably repeat the urodynamics study. When this will happen exactly is still in the works. The sooner the better the doctors feel. 

This all comes during a time when we are being faced with potentially having to move from the home we have been renting. As you can imagine with all the new medical items, the daily issues, and the stress of a move things are a little over the top. As always we turn to faith and Elias' smile and progress to get us through the toughest of times. Elias' Grandmother has started a campaign to either help offset costs of a move or more importantly try and reach a goal where we would not have to leave this home, by raising enough to purchase it. This is what Grandma posted on Facebook this morning:

If you have ever thought, "I wish there was something I could do to help..." I started this site to help raise money to offset the cost of their impending move. However the search for a healthy stable environment has been surprisingly and disappointing difficult. Many times they are not getting return calls to view properties, there is not air conditioning or other amenities necessary for Elias' health. So the focus is to try and raise enough money to try and keep Elias in the home they are in. The owner wants it on the market for sale by Sept 1st so our time is limited. I chose the site to fund raise because of a successful campaign to send a woman how had been bullied on a bus on a vacation. It raised $750,000 in a few weeks. If there are people out there that will support that wonderful cause, surely they would see the value of supporting this. Please share this and pass it on by all means that you have. All your social networks (facebook, twitter, pintrest, etc.) email, if you have a blog consider posting it on there and of course, word of mouth. Thank you

Our landlord has been a gracious one and extremely kind and helpful over the past few years. However, he is faced with having to put the house on the market. Time is limited, as he needs to put the house up by the beginning of September. We have been looking and we have been very surprised and disheartened by what we have found. We have also been frustrated by places advertising rentals not returning calls. To learn more visit for a video and more information on this along with the efforts to help us either keep this home or find one suitable for Elias. As always, your support, thoughts, prayers and efforts are greatly appreciated.

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