Archives for posts with tag: x-ray

IMG_6440When people ask me how Grace is doing a lot of times I respond by talking about how grateful I am that she’s been out of the hospital this summer. Facebook has been reminding me everyday lately about Grace’s surgery, a trip to the ICU, and all the complications of last summer. I have to take a minute to say that I’m crazy grateful for how far she has come in the last year.   Our girl – the one with spunk- has fully returned!   Having the mitrofanoff has made it much easier to care for her- allowing us a flexibility I never even really dreamed possible.   We can be spontaneous with less planning!

Even though she’s been out of the hospital this summer she’s never really settled.   We are constantly tweaking things or watching something. As of this writing, one of the things I feel like we are chasing is the noise that Grace has been making. Our normally quiet girl has taken to being very noisy. Sometimes I think she’s just “talking”. Other times it seems to be a sign of distress. We’ve been trying to figure out why this is. The school year rapidly approaching adds a bit of pressure as even after doctor visits, x-rays, changes in meds, even a dentist check, we still don’t know what is causing her discomfort. We snuggle her at home when she gets to sounding distressed and that calms her. I can’t see that working at school in the same way. I have fears of her being ushered out of classrooms because she’s interrupting others learning. Next week she will be in her last year of elementary school. I’m increasingly aware that opportunities for integration will only become fewer and I want her to soak up every last drop this coming year.

Yesterday I was at Hy-Vee picking up Pedialyte. It had been decided that we needed to give her stomach a break and see if that would perhaps bring her more comfort. I left work 10 minutes earlier than I regularly do and found myself standing in front of several kinds of Pedialyte. Most had prebiotics. I have no idea what prebiotics are and didn’t have time to do any googling. (Grace is not allowed probiotics because of her port so my hunch was that prebiotics maybe shouldn’t be in her wheelhouse either.) So anyhow I found a bottle that didn’t say the word prebiotics on it and went to check out. Luckily there was someone at the express checkout and no line because I was pushing my time. I had to be to daycare to get Graham (who doesn’t always want to leave right away) and be home for Grace’s nurse to be able to go home. Anyhow, I found myself in the express line face to face with this very young looking man and to my horror, I start hearing the music playing in the store and my eyes tear up.

It was Miley Cyrus…It’s the Climb. The part I began listening in on goes like this…

“There’s always gonna be another mountain
I’m always gonna wanna make it move
Always gonna be an uphill battle
Sometimes I’m gonna have to lose
Ain’t about how fast I get there
Ain’t about what’s waiting on the other side
It’s the climb”

So anyhow I start tearing up.   The chasing the noise to no avail. The weight of the past year. The fear. The constantly trying to get caught up. The advocating. The defending her. The unknown.

It all takes a toll. A really real one.

So much about Grace feels like an uphill battle. I wish sometimes it weren’t a battle just a slow and steady climb. But the battle sometimes is a war within ourselves trying to decide the right thing to do. Sometimes the battle is getting what we think she needs. Sometimes it’s about deciding what fights to fight and which ones to let go.

We want Grace to keep growing and learning and getting stronger. That’s the wanting to make the mountain move. She’s got crazy tough epilepsy that affects so much. Growing Grace is slow, long work that requires much perseverance and so much patience.   More perseverance and patience than I have some days.

We don’t know what’s on the other side for Grace. We are taking this one day at a time. That journey – that’s the climb if the song holds true.

So I realized it was a bit much – me getting all teary eyed in a store. I tried to put it in perspective. The tears receded. I was doing what I could for that day. I’d been on the phone with three of her doctors’ primary nurses. I’d been with Grace when she had a hard seizure that morning before I left her. I’d taken her to speech therapy. I’d given her meds, cathed her, dressed her, kissed her cheek, and handed her toys. I’d held her hand. And now I was going to give her Pedialyte and report to the doctor the next day.

I walked out of the store and away from the song.  I was, however, grateful that I had heard it play. Somehow it encouraged me to keep going.

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_3602Grace took her normal feedings and water intake today without any issue, which means she is on track to be discharged tomorrow! The only thing we have left is to draw blood for some lab tests. While they need to check general levels we also need to test her levels on her anticonvulsants since she was off of them for a whole week to ensure she is back within her normal range.

Graham’s letter of the day for show and tell was X; Child Life had some old X-ray films for kids to play doctor with and I was going to see if I could borrow one but I forgot before going home last night. So this morning I went online to find an image. Graham thought it was really cool to have an X-ray; I guess that that was you get for spending three and a half weeks in and out of hospitals. Graham saw this penguin one that he really liked so we went with that.

Kevin

IMG_9359Last week Child Life sat with Graham and while using a special doll with a port they helped explain Grace’s port surgery. Graham was able to push medicine (water) in through the port and then drawn back blood (it turned red). He’s talked about it a few times since then but the best part was that someone was focused on him explaining something about his sister.

Child Life stopped by yesterday with a Chemo Duck (ports are used frequently with chemotherapy) which is a stuffed duck in scrubs with a port, it’s not as fancy as the one Child Life used with him but it has two places the port can be attached. I took it home last night and he loved it and named it Duck; he even took it to bed with the port attached. He asked if Grace got one too and I said that the duck was just for him. He thought that was pretty cool and said that he would share his duck with Grace. Sure enough, this morning he had his duck with him on the way to daycare and he left it with me to take to Grace for the day. Tonight when Joy picked him up he was ready to have his duck back so they had to make the trek back to the hospital to pick it up!

Grace continues to make progress she has been tolerating her normal feeding volumes spread out over two hours. On Wednesday we shorten the time frame to one hour. As long as the plan stays on schedule she should be discharged on Friday. We had an x-ray last night which confirmed no further occlusions or blockages.

Joy discovered today that Grace was 44oz of daily free water short after IV nutrition (TPN) was stopped yesterday. The TPN provided her with needed nutrition but also accounted for her hydration needs. Unfortunately, there was not good communication between the dietician and the general peds resident.  Thankfully the managing doctor and resident from the PICU are keeping an eye on Grace. Joy got the PICU resident working on a plan, and she was happy to do so. Hydration is essential to all of us but for Grace a lack of fluids can lead to constipation which we desperately need to avoid right now.

Grace got out a bit more from the room on some wheelchair rides, she continues to look more and more alert and active each day.

Kevin

IMG_3495Grace has in the ICU tonight. I was with her today during her monthly infusion that she practically slept through. Her abdomen has been a bit distended but that was attributed to some gas that we have been able to mitigate through venting of her G-tube and with gas drops but today it just seemed like it was getting larger but I kept telling myself no it’s just the really uncomfortable hospital bed/recliner I had her positioned in during her infusion. When we got ready to go home I was buckling her into her specialized harness in the van and the preset strap no longer fit like it did just five hours earlier and I had to extend it two inches to fit.

Before leaving the parking ramp I called Grace’s pediatrician and he advised we go straight to the ER as we would need an X-ray. So we got out of the van and made the trek to the ER. While we were triaged immediately no one knew what a Mitrofanoff was which makes me seriously consider how fast I could drive Grace to her doctors in Minnesota. At first, we were not getting the needed momentum due to significant delays in radiology but once the results came back and due to calls we made to our surgeon’s office in the Minneapolis things were quickly set into motion.

It’s not a big secret that we are often leery about the capabilities of local medical care which have been in part to providers transferring care out as Grace is so complex, the complete lack of subspecialty in the area or even the entire state (in some aspects we just don’t have the population needed to recruit the subspecialties), and often times unwillingness to work as part of the overall team with Joy and I as captains of the ship (after all we are the only two people in the world that fully understand Grace’s complexities and interworkings). We were pleased that the pediatric surgeon that was called in was more than willing to work with us and with our doctors in Minnesota.

Based on the local surgeon’s consultation with our surgeon’s office Grace was admitted to the ICU, not because of sickness but due to her complexity. Second, they began pumping her full of IV fluids which we were able to see some immediate impact, third, they started an NG-tube (a tube through the nose to the stomach) to pump out excess gas. The radiology tests showed occlusions in her bowels a risk of this type of surgery. This is the third surgery she has had in her abdomen over the last 10 years and with each surgery the greater the chances of complication. An occlusion is an obstruction in her bowels that is can be caused by any change to them.

The plan right now is to limit all volume by mouth and move everything to IV, she will be in for at least 24 to 48 hours and hopefully, we’ll be able to avoid surgical intervention.

As we waited in the ER Gene Autry singing Back in the Saddle Again played over and over in my head.  We pretty much have saddle soars now I would just as soon not to be riding but here we go again.

This would be a really good time for anyone to pray or think good thoughts…you decide which. The next 24 hours will be crucial.

Kevin