Archives for posts with tag: bladder

img_1506As I write this Grace is sleeping in the tent we use for traveling. We are in a hotel room in Minnesota in December. It turns out all the tricks in the world couldn’t keep Grace from having to have one more surgery in 2016.

We had this really normal weekend at home; birthday cake for Graham, Christmas program practice at church for Grace and Graham, Kevin and I at the Civic Center to see the Carole King Musical, the actual Christmas program at church, and seeing the Nutcracker at Hoyt Sherman, complete with an intermission visit from some of our very favorite dancers.

The second we got home from the Nutcracker it changed a bit. We had to get Graham packed to go home with my mom and dad for a few days because Grace was having surgery. I’m very thankful that Graham hasn’t had to be there the day of any of Grace’s surgeries this year. The rooms where you wait with her before and with her after are small. Waiting rooms are hushed. There is a multitude of instructions. I have a hard enough time with my own feelings- as we wash her with the special soap, get her in the gown, answer the questions, sign the forms, talk to the doctor, the anesthesiologist, the nurse, try to get her to be still enough for the blood pressure machine to work, it’s so much.

While we were doing all of that Graham was building a sled for his Curious George and playing outside in the snow. He was hanging out with his cousins.  He was experiencing five-year-old boy perfection.

We drove north yesterday morning. The roads had been plowed pretty well, the trees were beautiful all covered with snow, the sky bright blue. It was crazy cold when we started and just got colder as got closer to Minnesota. So cold that we drove straight through not giving Grace her customary breaks to stretch her legs along the way. Our girl hates cold. Hates it. We did everything in our power to get her somewhere warm quickly.

When we arrived we hadn’t even checked in yet when Grace’s doctor – all dressed in her surgery garb- greeted us. She greeted us so warmly and told us she wanted to get Grace going early so she could get us home. We’d talk with her two more times – once more before the surgery where we showed her the pictures of everything that’s been going on with Grace’s mitrofanoff and we talked through how Kevin and I would take care of Grace for the next 7-10 days as she healed. We saw her again when it was all done when she explained to us what she’d found and confirmed that we were right to not wait to get the mitrofanoff revised now. It wasn’t going to get any better without a surgical intervention.

Grace took her sweet time waking up. The first time she woke she complained a lot. We asked that she be given some more pain medication. With that on board she slept a bit longer, and the second time she woke up she was pretty good. A bit groggy, but she made an attempt to grab some tubing and play. We got her dressed. Got her some formula in her stomach. Got her in her wheelchair and got her to the hotel. She played for a bit. Then we snuggled. She played a bit longer and then we got her to bed.

We have pain meds to get her home. There are antibiotics we will give her for six more days. There’s a catheter in her that we pray she doesn’t pull out. When everything’s had time to heal (it could take about 10 days) Kevin and I have a special syringe that we’ll use to take the catheter out of her and we will go about our normal business.

So for anyone who’s counting – that’s 4 surgeries in 6 months for our girl. That is way too many.   I for one am hopeful for 2017 that brings: health and strength to our girl, less worry and more together time for our boy, and energy, inspiration, and courage for Kevin and I to take our family out in the world and enjoy it.

Joy

 

 

 

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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.

Joy

IMG_9257Grace is still in the ICU. The ICU has been an interesting place to be. I’m grateful that this is the first time that Grace has needed this level of care.   She is constantly being monitored. I feel like we are relearning things about her as we work to get her back to where she was. There is so much I take for granted about her and what she can do – but as you explain it to others you kind of have to think to yourself about how absolutely far she has come. You always want more, though. This is making me realize that what we had was really quite a lot.

We aren’t able to give her any food or medicine in her stomach at this point. She is being maintained by only IV fluids and meds. The majority of her seizure meds are not available by IV so she’s had some tougher seizures to contend with. Today we will begin giving her a little nutrition through her IV.

When we came in her belly was really bloated and hard, like a tight drum. It’s much softer now. They are taking measurements so we know for sure it is going down.

They are actually tracking quite a bit about her. Everything about Grace is trending in the right direction to allow us to take her home. But, it’s slow. This morning we learned that we should plan on being here all week.

She’s comfortable. She’s getting better. We need to be patient.

Joy

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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.

Kevin