Last Friday among all the chaos of discharging from the hospital and quickly returning to the Emergency Room, if you can believe it we actually squeezed into that an ultrasound and a Urologist clinic visit. Dr. Menovich is Elias new urologist and he is a pleasant and very knowledgeable doctor. He also works with many FA children so he has a good understanding of Elias’ diagnosis as well. We discussed Elias’ history pertaining to the hypospadia, kidney reflux and other urological areas. He took a look at the hypospadia repair that had been done and was not certain for 100% that he wanted to do a final stage, at least not just yet. One thing he is concerned with is that Elias testicles have ascended to a point where they are not always visible, in fact I believe it is the right one can no longer be found. His urologist expressed concern for this in Maryland so this was not a huge find, just the first we have really discussed the matter. Dr. Menovich is concerned about health related issues that could occur if this is not corrected. So it appears that is his focus and we could potentially be adding a surgery to the docket for this correction. How soon we do not know. The ultrasound we had performed earlier in the day was reviewed and found to be acceptable. They were able to confirm the ectopic kidney which simply means it is smaller than normal and not in the normal positioning. I can not recall which side, but the ectopic kidney appears to be sitting behind the bladder. Dr Menovich did not express too much concern about this at this time. We also went over the continuation of the prophylaxis administration of amoxicillin because of the kidney reflux and potential for urinary tract infections. Typically, a child would be switched to Bactrim but this is another example of something FA patients should stay away from. Bactrim is a marrow suppressant in patients with FA and obviously harmful, so they try to avoid prescribing it unless absolutely necessary. Katharine and I breathed a sigh of relief because there was discussion in Maryland about changing him, more for convince to us since it does not have to be refrigerated, like amoxicillin and supply is 30 days versus 14 days. Thanks to our not wanting to take a shortcut or attempt to make our lives a little easier we did not make a choice we may have regretted. At the same time, if the doctors had known that about Bactrim & FA they would have never brought it up. Just another point for us that helps to remind us that bringing Elias here was indeed the best decision. Not that we have doubted it mind you. It is just nice to get that reassurance when you drop everything and make as drastic a change as we did for his medical care sake. Our final discussion was to repeat a study Elias had in June of 2008, the VCUG. A voiding cystourethrogram (VCUG) is a test which uses X-rays to take pictures of the urinary system. It shows how well the bladder and its connecting tubes (the urethra and the ureters) are working. They also check for fistulas from these areas to other places where they should not occur. While none were found in June of 2008 the doctors did say that because of his size it was not possible to completely rule out the potential they exist or not. Dr Menovich wanted to try and get this as quickly as possible so that if it was unsuccessful we could take another approach and tag it on to an existing surgery. Since there is one coming up Thursday it would be ideal timing.
So yesterday was our VCUG study. Elias if you will recall is a very difficult person to catheterize. Come to think about Elias is difficult to do anything to, medically anyway. We knew going into the study that there was a greater chance of failure rather than success, but we figured new hospital, new people, maybe they could be the ones to get him catheterized. Well no such luck of course. Although both the nurse that first attempted and the doctor that followed said they could tell for certain where it should be going. Reflecting back a moment, Elias has two urethral openings, one is false. They could see urine dribbling out the opening they were trying signifying it was the correct placement. They were just unable to advance the catheter for some reason. This might be something else that gets a closer look in the near future. So the study was scrubbed and they are working to see if they can do this part while Elias is in surgery on Thursday. It will be a slightly different procedure, more invasive, and a different look. They prefer the VCUG, but you have to take what you can get sometimes.
Elias has been enjoying his time at home. He is getting some much needed rest in preparation for Thursday’s surgery. He has been touch an go with the amount of interaction he wants right now. This new trach he temporarily has in plus the malacia skin flapping around from the pouch is making breathing a little more labored and thus he tires more quickly. He seems to do well enough when laying down, be it on the floor, bed or playpen. It is when we sit him up or pick him up that he tires fast. As long as he is happy that’s all that matters, and for now he seems content to play in his playpen and have us over to play with him every so often. We are going to try and enjoy these next few days at home because it is uncertain how long we will be in the hospital post-surgery. Thank you all for your thoughts and prayers.