Archives for posts with tag: cath

img_4151We (Kevin, Grace, Graham and I) left for Minnesota on a recent Sunday. Our van was packed pretty full for a two-day trip. Grace doesn’t travel light.  (That’s a different blog post entirely!). Graham packed his own suitcase with the following belongings; a Santa hat, his Little Passports suitcase, slippers, his bug jar, books, sleeping friends, and Thomas the Train.

He was delighted to stay in the hotel that first night. He had a whole bed all to himself.   He swam in the hotel pool. Pizza was delivered to our room. Disney Jr. was on TV.

Grace was happy to be out of the car.

Grace had three appointments over two days. First, we followed up with the plastic surgeon about her eyes. All looks good. The swelling could last a few more months. We have one more appointment with the surgeon in January. After that, we will continue to watch her eyes with the eye doctor. If we see drooping again we go back to the plastic surgeon. Graham sat on my lap for the appointment. He played on the iPad at times putting his hand on my cheek and pointing my head down to see what he was doing.

After that, we went to Culver’s for lunch. One thing that’s different about Minnesota with Graham than without is our food choices.   When Graham is with us we frequent restaurants that serve chicken nuggets, chicken strips, pizza, or pancakes.   At this particular Culver’s we were able to watch the trains (the light rail) go by.   Graham led us straight to the tables by the big windows so we wouldn’t miss a single one.

We got to the second appointment. This one was with Grace’s urologist. The appointment has several steps; first an x-ray, then an ultrasound, then height and weight, then the doctor. Here’s where we had trouble. Grace needed to be cathed, needed meds, and needed food all at the same time. Graham wanted to be playing in the kid area on the other end of a large waiting room. That left one of us trying to get to all of Grace’s needs. We travel with a green bag full of Grace essentials. We put it on the back of her wheelchair. Things are organized and sorted into baggies. We need water – hot water for meds and some at room temp to keep her hydrated. There are gloves, lubricant, catheters, and wipes. Medicine, medicine crusher, syringes, and tubes are all in there too. Then the box of formula – that sometimes, depending on how you open it, drips a small amount of sticky white liquid on your hand, or the tube, but you are powerless to do anything about it because if you let go those few drops could become a lot more.

Graham was sure we were done after each step of the appointment. Because we were trying to meet both their needs we ended up feeding Grace as we talked to the doctor’s nurse and then the doctor. When we were with the doctor Graham did excellent. The doctor told us Grace will need a surgical revision of her mitrofanoff. This is not an immediate need. We have some tricks we can try to buy us some more time. Neither the doctor, Kevin, or I want her to be in surgery anytime soon.

Once we were done Graham was so excited. The Lego store at the Mall of America was next. But then we had to wait some more to schedule Grace’s follow up appointments.

All that done we left the hospital, went down the circular parking ramp, where Graham went “whee” and declared that he loved driving in circles. We were ready for his part of the trip.

He’d told us when we planned the trip that he definitely wanted to go the Lego store. It turned out he wanted to go to no other stores.   Lego store was done he was ready for his next objective. A train ride.

Grace was done being in her wheelchair.

img_4149After the train ride where Graham got to go under the airport on the light rail it was back to the hotel. He ate some pizza, played with his Legos, and went swimming in the hotel pool. He fell asleep in another big bed – all for him- watching TV.

We went to the breakfast buffet in the morning. He chose Cheerios. We talked with a few girls eating their breakfast. Graham and one of the girls had a jumping contest to see who could jump highest.

We packed up to head to Choo Choo Bob’s – Graham’s final objective. As we left the hotel room he made Kevin stay behind but led Grace and I outside to see the singing rock he and Kevin had discovered when we first got there. The singing rock is actually a fake rock with a speaker in it.   He was so excited to show it to us. He did a little tap dance as we listened to the music.

Choo Choo Bob’s was a lot of fun. We had to leave story hour after only 10 minutes to get Grace to her final appointment. Graham handled it well. Way better than is even fair to a boy at Choo Choo Bob’s. The last appointment was the eye doctor. Eye doctor appointments take at least 2 hours. Grace wasn’t being particularly cooperative. Graham actually scared the doctor when he popped out of the chair he’d been sitting in very quietly. After she’d recovered the doctor started talking about Grace’s next appointment. Graham interrupted her piping in that he didn’t think Grace should have any more doctor appointments.

Then, there were chicken nuggets for lunch with fruit punch to drink. We started driving home. Graham wanted to be home 20 minutes after we left.

img_4150I sat in the back of the minivan between the two kids as we drove home. There were moments when my shoulders held both their little heads. We’d done it. It wasn’t always pretty. Kevin and I hadn’t really unpacked any of the information we’d heard.   Having Graham there prohibits some of that.   But we’d seen a singing rock. Graham had gone under an airport. Grace doesn’t have to go back to Minnesota until January. We’d done it leaving no man behind. We’d done it together. I don’t feel like Graham should have to be with us every time, but sometimes he should be there. She’s his too.

A few months ago he’d asked me why anyone would stay in a hotel if their sister wasn’t having surgery. I tried to explain the whole concept of vacation.

Maybe he kind of got it.

I hope one day soon we can get him (and Grace) an actual vacation.

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_1626Yesterday was supposed to be a very central day between the past and the future in our day-to-day lives.

Grace’s Mitrofanoff surgery was the end goal, the prize if you will at the end of two years of working to prevent all to frequent urinary tract infections (UTI). In order to proceed with the surgery we had to prove that cathing would solve the problems. We have found that with regular cathing four times a day (now moving to five times daily) along with a nightly rinse of the bladder and an instillation of an antibiotic would prevent the UTIs. This was further mediated as we have been able to manage her bowel movements through another process that helps reduce the pressure on her bladder.

We did everything we needed to do and it has come with limits on our daily life. With Graham if he has to go the bathroom while out and about you quickly find the nearest and hopefully moderately clean bathroom. With Grace we need a place to lay her down, a private place that is clean and would not present other infection complications. We time activities around her schedule and we have figured out how to squeeze every possible minute to the max to take care of her needs but also provide Grace with a life that does not require her being a prisoner in her own home.

We had dreams of what life would be post-surgery, the hope of freedom and exploring the world, possibly traveling a distance further than the time in between two cathings. While only delayed a month it is a draining hit from what we were prepared for.

Yesterday I went back to work traveling to Cedar Rapids for a meeting that I was originally going to miss. Joy stayed home with Grace and was confronted with the reality of Grace’s day to day cares. I pondered them while she dealt with them.

As I drove I reflected that if the day had gone to plan I would be once again driving on I-35 a drive to “the Cities” a drive I have made countless times. While in college I went to “the Cities” frequently to visit friends, travel to fraternity events, or catch an occasional GB Leighton show. A roommate in college who shall remain nameless (Ben) essentially told me that normal people refer to Minneapolis and St. Paul as the Twin Cities, but not I…to me they are “the Cities.” Little did I know that all of my travels to the Cities and eventual one year stint as a Minnesotan would come in handy navigating to all the places we take Grace to for her medical needs.

I never intended living in the Des Moines area; it wasn’t what I was looking for and I longed for life in a slightly more exciting place, a place with ready access to more, or just the ability to have adventure. It’s the wanderlust in me needing to be exercised. After waiting ten years we were on the cusp of having some freedom and it slipped away albeit for just an additional month. Don’t get me wrong being in Des Moines has presented us with some unique opportunities for Grace and we know that finding a better place to live would be an incredibly difficult task if not impossible.

Recently I was able to exercise my wanderlust on an overnight trip to St. Louis to see Bruce Springsteen & the E-Street Band. I had full intentions of maximizing those two days away but they were cut short in part due to Grace receiving an adapted bike from the Variety Club who asked for us to be on air during their telethon and on the other side an IEP meeting. Both were good things but they came with some sacrifice of which I was happy to comply.

I arrived in St. Louis, parked the car and made a beeline to the general admission lottery area to attempt to gain entry to the pit. There were only 10 minutes left, I got my ticket and waited in line and just a few minutes later my section won and were the first to enter the arena floor. Having driven for six hours I then stood for six hours and was imparted into a 35th anniversary of a cover to cover rendition of “The River”.

The music spoke just as much today as it did when originally written, two times Bruce reflected on the album that I thought of during my time on the road yesterday. “…when you’re young and you’re first startled by your parents humanity and shocked to realize that they have their own desires and their own dreams and their own hopes that may or may not have panned out the way they thought they might. And all you can see when you are young are all the adult compromises that they had to make. And you’re still too young to see the blessings that come with compromise. So all you can see is a world closing in, closing in and all you can think about is getting out and getting away…” This is true even in the present day where I find myself struggling with the blessings of compromise.

He concluded the set with “The River was about time, time slipping away and how once you enter the adult life and you choose your partner and your choose your work, the clock starts ticking. And you walk alongside not just the people you have chosen to live your life with but you walk alongside your own mortality. You’ve got a limited amount of time…do your work to raise your family and try and do something good.”

We learned today that the second urine culture that was collected prior to starting antibiotics came up negative after 48 hours and that the lab was concluding the test after just 48 hours. The test that showed the bacteria was cultured for six days. Talking with a former lab manager I’ve learned that a urine culture would be completed in 48 hours and would not be cultured for six days. So it appears a false positive may be responsible for the delays.

In the meantime my hope is that within our compromise that we are doing something good. Many times it feels like the tank is empty and there should be energy for more, but in reality emptying the tank may have been the something good.

Kevin

 

FullSizeRenderGrace will be undergoing a surgery to have a Mitrofanoff that will create a tunnel using her appendix between the bladder and outside of her abdomen. This will allow for us to easily empty her bladder with a catheter making her personal cares easier as she continues to grow and will help prevent UTIs which she has been prone to over the years.

This week was meticulously planned in prep for Grace to have the surgery tomorrow.   Joy was traveling for work and we worked out the details of managing everything that needed to be done in prep. All systems were go. I was wrapping up my time at work yesterday and ready to be off for a week and a half when I got the call. The surgeon’s office called to tell us that bacteria showed up in Grace’s urine culture on the sixth day and we need to treat it ASAP along with getting another urine culture if there was any hope of still having the surgery.

I raced home to meet Grace and her nurse, collected the sample and headed off to the lab. Dropped off the sample and stopped by two pharmacies on the way home to pick up prescriptions we would need for our time away and the antibiotic she needed to start. In between numerous text messages with Joy and Grace’s nurse along with phone calls with Joy, the surgical clinic and the pediatrician’s office we seemed to be back on track.   Although peculiar questions were asked like has ‘Grace been to Wisconsin?’ and there appeared to be disbelief that she was content and her health status was normal.

The bacteria found is named Elizabethkingia Anophelis a bacteria string recently discovered where 69 people in three states have confirmed cases, 26 that have been fatal. According to the Center of Disease Control (CDC) most of the patients were over 65, had serious health conditions and it is has not been determined if the bacteria or the other health conditions were the cause of the deaths. Grace would be the first documented case in Iowa and we joke that she now is the dot in Iowa on a CDC map. We have to laugh as Grace continues to teach us new things.

This bacterium can be found in the earth and water worldwide and transmission is unknown. No need to worry there are no men in black suits outside or an ET bubble tent going up over our house. The bacteria could very well be living in many of us but without other health issues be inert and there is so little known about it that the infectious disease department at the hospital canceled the surgery as a precaution.

We have started Grace on an antibiotic that is the preferred treatment option and will be following up with two additional urine cultures on top of the one currently in process. Surgery has been rescheduled, nursing schedules are being adjusted to cover the some of days we planned to be away, life has shifted and we have regained the next week and a half that we essentially carved out from all existence. In my mind time stopped today and would not resume until for another week and a half, everything would halt.

The strangest thing that I had to do today was to go to daycare, still in disbelief myself and tell Graham that Grace was not going to have her surgery. Graham was painting and was not expecting me; he was expecting Grandma Choo Choo to pick him up and didn’t understand why I was there. I told him that I needed to talk to him and tell his 4-year-old brain that Grace was not going to have her surgery and we would not be going to the hospital. I felt like I was telling him someone died, perhaps because that was the mental state that I was in. He thought it would still be a good idea if he went to Grandma and Grandpas “for four days.” Turns out he really just wanted to convince Grandma to take him to ‘Old McDonalds’ on the way. Graham is always thinking, making lemonade out of lemons and he loves lemonade.

So far we know that the preliminary culture is negative of the second sample prior to starting antibiotics. Now we wait.

Kevin

IMG_2502

Grace has a schedule:

  • 6:15 – Morning meds
  • 6:45 – Out of bed (allow time to wake up before next step)
  • 7:15 – Cath, get dressed, G-tube feeding
  • 10:00 – Water
  • 11:30 – Cath
  • Noon – Meds and G-tube feeding
  • 2:30 – Water
  • 3:30 – Cath
  • 4:00 – G-tube feeding
  • 5:00 – Meds and water
  • 6:30 – G-tube feeding
  • 8:15 – Cath, pajamas, meds, water, snuggle

The rhythm plays every day. Some days we fight it and bemoan it. It feels constraining, limiting. We can’t do what we want because we have to keep it going. We stretch it in places to allow the flexibility we need to get something done, but sometimes there are consequences to that. One time, one horrible time, we’d flexed it so much that we actually forgot to feed Grace. Our girl, normally so easy-going was mad. M-A-D. When we realized we hadn’t fed her we felt absolutely horrible.

On hard days the rhythm is what keeps you going, you know you have to do it and so you just move from one thing to the next, keeping her going and yourself.

The rhythm happens if we are sick, if she is sick, if Graham is sick. If we are grieving, if we are exhausted, if things are changing, if we’re totally over-loaded, or having an easy day it continues.

That’s the daily rhythm. There are others.

Each week she has therapy on Monday mornings and Wednesday afternoons. Each Sunday night I write an email to school about how her weekend was and letting them know what we expect for the week ahead. (When Grace will be out of school, who the nurse will be, if we expect her to be tired, etc.)

She gets an infusion and a shot every 28 days.

Fall and spring mean multiple trips to Minnesota for specialists that we are scheduled to see six months apart. Right now we are able to only have to see those docs twice a year and don’t have to schedule in the middle of winter. It usually means at least two trips to Minnesota and back each season. The docs only practice certain days. All in all to only be heading that way in two seasons is an awesome thing.

I have fed Grace in our bathroom while Graham is in the tub (I took a picture one night because it just seemed so strange yet normal to me in the moment) trying to keep the beat for both of them. I did this knowing ultimately someone would be off by the time it was all over, but trying my hardest to keep things on track.

I was away from the rhythm for a few days recently. Coming back to it feels demanding, un-relenting even. I thought more about how we are just keeping her going in completing these activities. There’s no fun with her in there – except for the snuggle at bedtime. Now that I’ve been home a few days it feels less that way. It is what it is. It keeps her going so we can snuggle, and read, and swing, etc.

We’ve been told that we make it all look easy. I’m never sure how to take that. Is it a compliment? Or is it a criticism that we aren’t as transparent about what it takes as we could be?

I guess it doesn’t matter. It is what it is. It’s how we work. Part of the rhythm of our family.

Joy