Phase 2: Urology & Kidney Surgery

Elias had phase 2 of the urology and kidney surgery Wednesday. We now have a functioning mitrofanoff which we are having to catheterize every two hours to drain his bladder. Over the next few months we will be able to stretch the intervals progressively up to 4 hours. The process is fairly simple overall, just mentally adverse, especially to Dad. We are actually finding that due to the small size of everything Elias has we are doing the catheterizing at times every hour and a half instead. This frequency is pretty demanding, but we hope as we get more comfortable with the process it will seem less daunting. That has been the case with many of the medical skills we have had to learn for his care.

Elias himself is doing well, very well. He is happy not to have the leg bags for the drainage tubes anymore. We are down to one drainage tube left in, but during the daytime it is capped off and only used overnight. So with less tape, no straps and bags, and fewer tubes he feels more free and loving it! Our biggest stress at the moment has been having enough supplies to last until our initial supply order arrives. The Urology team seemed very unorganized with this and it will be mid- next week before the initial delivery will arrive. While we received some supplies to come home with they did a poor job evaluating what we would need. Overall our experience with the Urology team has been less than stellar. Not even Mediocre. Outside of his primary Urologist, who has always done us well treating Elias, but the overall team has left a lot to be desired. Very poor communication has been the stem of many issues, some of which is caused by Elias being ventilator dependent and restrictions on where he must be bedded inpatient, but those should be accounted for and understood it will take more effort to handle being outside the normal unit. We believe we have the supply issue sorted somewhat, but it has created a lot of stress unnecessarily. It is stressful enough today trying to create a comfort level with the new procedures and schedule. We also had to spend time training Elias' day shift nurse how to cath him. She was suppose to be allowed to come up to the hospital to receive training as we did because no one in the agency education area was able to teach her. They were simply going to "Google it" and give her papers. His Urology doctor said that was unacceptable and we agreed. The agency told our nurse to contact them the day prior to the training, which our nurse did. The agency did not return her phone call. The nurse called a second time and was told the person she needed to speak with was on the other line and to leave a voicemail to be called back when she was done. The nurse did as instructed, still no return call. We were not surprised by this sadly. To us it only shows that they will say anything to placate you, which is a major pet peeve to us, then ignore you hoping the request or issue will go away. It also shows that the agency, or this franchise of it I should say, has no regard for overall patient care by not being proactive in ensuring there was proper training for a skill nurses caring for Elias would need. Then again they have done such a fine job finding nurses to work at all (sarcasm).

We continue to hope that catheterizing him will ultimately be proven to only be a temporary necessity. In about three months we may repeat the uro-dynamics study via the mitrofanoff to determine if bladder pressures are contributing to his kidney damage. This has been by far the most intense and overwhelming chapter for us in his journey. That says a lot considering all the various things Elias has been through. We know we will get there with comfort as with everything else we have learned, but in retrospect we felt like things would get less complicated. It has been quite the opposite. Despite all of this Elias has continued to fight and thrive and we have fed off that energy to overcome our fears and inhibitions too. We are happy to be moving forward and hope to getting on with the next phase. Thank you all for your continued showing of support through thoughts, prayers and comments. We appreciate everyone and their role in our lives and all that each of you do.

We will keep you updated as we can with Elias! Thanks for reading and checking in on our little man.