Archives for posts with tag: kidney

IMG_9509We aren’t out of the woods yet – but we can see daylight.

Our visit to see the surgeon in Minnesota this past Thursday didn’t exactly go as we’d planned. The surgeon ended up being stuck in an operating room and not able to see us. Grace had a few x-rays and a test of her bladder while we were there. Two other doctors and a team of nurses all ended up weighing in on Grace’s care.

The good news is we can use the mitrofanoff. We are able to stick a catheter through a small hole in her belly button, have it travel through Grace’s appendix, into her bladder and pee comes out. It is wondrous. It will most definitely change our lives (Kevin’s, mine, Graham’s and Grace’s) and make it easier to care for her.

The not being out of the woods is a combination of a lot of air still in Grace’s abdomen, a slight urine reflux to her kidneys when her bladder is full, and a small pea sized polyp that has developed on her belly button. The surgeon called on Friday, apologized for missing us, and we hatched a plan for each of those things still lingering. We are adding a medication for five days to see if we can get rid of some of the excess air to make Grace more comfortable; this will give her bladder more time getting used to having to work again and then we will retest. Her kidneys are not at a significant risk – we can afford to wait. We will watch the polyp as there is a chance it will go away on its own. When we’d left on Thursday they said we’d see the surgeon in November. When she called me on Friday she said she’d arrange for us to see her in September.

We continue to watch for any distention, monitor Grace and note times she is uncomfortable, monitor her energy level, and watch for fevers. We are not out of the woods.

The surprise of the trip, which perhaps threw us more, was the instruction for us to cath Grace using the mitrofanoff for the next three weeks, every three hours…around the clock. They explained that in some ways its like a pierced ear and the body would try to close the hole; we have to remind it to stay open. We were sleep deprived from the past three weeks – what’s three weeks more right? We took it in stride I think when the nurse was in the room who gave us the news.   After she left we both just looked at each other and remarked that perhaps someone should have told us this part a long time ago. We thought we’d rest easier after having visited the surgeon, and it just wasn’t going to be the case. We have settled on cathing her at 11 pm, 2 am, and 5 am. Three days down, 18 more to go. Had we known in advance it wouldn’t have changed our mind on whether or not to do the surgery but we would have been prepared mentally that this would be a necessary step.

Grace overall has had good energy and continues to improve in her steadiness.

The ultimate test of her stamina will come on Monday when she starts 4th grade.   The first few weeks of school tend to really wear her out when she hasn’t had a small bowel blockage and major abdominal surgery the last month of summer vacation. We will be communicating a lot with her school team to be sure that we are all pushing her just the right amount. They too understand that we are not out of the woods yet. It will be strange to not be right with her as we have been most of the last month but we will let her go because we can see some daylight.



A growing pump and bag collection.

Grace has her pain meds on board and is resting comfortably. So far she has no real desire to be awake for more than a few minutes. She has a low grade fever that is being watched but also not uncommon post op.

The surgery went well and our Urologist is very pleased with the entire procedure. While Grace has an abnormally large bladder the doctor stated it is a beautiful bladder that did not require any augmentation as it was smooth on the inside which prevents pockets of urine from remaining that could cause UTIs. She ‘tacked up her bladder a bit’ to help with an easier cathing through the Mitrofanoff that was constructed, it is a marvel we can move organs around like that.

During the operation they checked out her kidneys which are good; we didn’t have any concern and the tests have been normal but they had an opportunity to complete a visual check.

The Mitrofanoff is created by reusing the appendix to create a channel from her belly button to her bladder that we will eventually be able to insert a catheter through.   Not only does Grace have a beautiful bladder but also a long appendix that allowed for it to be placed in exactly the place it needed to be.

She has started back on a small amount of formula and will continue to increase as she tolerates the feedings but it will take some time.

Grabbed some lunch from a neighborhood café where we got some the Harold & Kumar Poutine which consisted of House Cut Fries, Pork Curry Gravy, Kimchi, Caramelized Onion, Parmesan, Cheddar, a Soft Poached Egg and Chipotle Aioli. It was quite good but I think it is fair to say that I enjoyed it more than Joy did.

That’s all for now, we will see what tomorrow brings.