Monday, April 20, 2015

Gastric Emptying Study Results

To recap, last Tuesday Olivia had a gastric emptying study done to further address the GI issues she's been having for quite some time. She had to eat a big breakfast consisting of two scrambled eggs and two pieces of jelly toast. Given that fact that we run her g-tube nightly until she wakes up at about 6:00 am, since about August, she very rarely eats breakfast. The night before the test, I stopped her g-tube at midnight so that her belly would be good and empty but that didn't do much to increase her appetite the morning of the test.

The study began at 9:00 am. She was given 15 minutes to eat her plate, with the eggs being the most important since they contained the radioactive particles. She did her best to eat as much as she could, gagging through it. Eggs were never a favorite of hers before, but seriously, I don't think she will ever eat an egg again, no lie.

Once the 15 minutes were up she climbed aboard the MRI table and had her first scan and picture. She had to lay as still as she could for 1 minute while they gathered the data.


She had a total of three scans done to complete the study; one scan every hour until the breakfast had emptied from her stomach and entered into her intestines. Once the scanned showed the breakfast had entered into her intestines the study was complete. We were initially told she could need up to 4 scans but her stomach had emptied quicker so she was done after 3 scans. 

Our gut feeling after completing the study was that her stomach had emptied at a reasonable rate and this would be ruled out as a cause for her GI issues. 

I hadn't heard anything yet on Friday afternoon so I called the GI clinic to ask about Olivia's gastric emptying study results from Tuesday. I was told the results would be given within 2 to 3 days so I wanted to check before the weekend. As I figured, I was told the results came back perfectly normal. I was relieved by this, given that the both options we were given to fix this had it been the case (placing a GJ tube or surgery to fix that which was causing the delay) both didn't feel like that great of options. So I'm relieved for that. It isn't confirmed, but Dr. Sarah believes that what Olivia is going through is either the result of the delayed emptying or DIOS. Given that she doesn't have the delayed gastric emptying, it seems likely that she has and had and will likely have again, episodes of DIOS.

DIOS or distal intestinal obstruction syndrome, as described by the NIH (National Institute of Health) is: "Complete or incomplete intestinal obstruction by viscid fecal material in the terminal ileum and proximal colon, is a common complication in cystic fibrosis. DIOS is mainly seen in patients with pancreatic insufficiency, positive history of meconium ileus and previous episodes of DIOS."

I was told that if it is DIOS, we will treat it and manage it with miralax and clean outs if and when they are needed.

Olivia suffered from meconium ileus at birth, so I already knew that the likelihood of DIOS in her future was probable. Given her poor intake of foods/drinks by mouth since the placement of her g-tube, adequate food variety intake is poor as is sufficient liquid intake. Even with water flushes via her g-tube, the amount of fluids she needs, probably on occasion she hasn't been getting enough, compounded with the thick mucus that already lines her intestines, DIOS, seems likely. She's suffered from vomiting episodes in the past where she hasn't stooled as frequently as normal, pointing to signs of a partial obstruction at times that have been resolved with more miralax. Now that we've been giving her 1 capful of miralax every day, her system seems to be emptying like it should. However, this weekend she still had an episode of terrible pain in the morning after her nightly g-tube feed even after running at a lower rate. The pain subsided without vomiting after she was able to empty her bladder and stool so it's still hard to pinpoint the exact cause of this pain.

Could it be that her bladder, stomach and colon are all that full in the morning that it's causing the pressure and pain? Is it intolerance to the g-tube feeds, either because of overall volume or rate? Or is it still something else that we have yet to figure out?

As I told the GI nurse on Friday, my gut feeling was that the emptying study would be normal and we'd be no closer to figuring out this entire mess. I feel like this is going to be a never ending problem and one where we really never will have a definite answer as to what is causing this. Right now, I feel like she will be diagnosed with DIOS and that we will be told to keep up with miralax to manage it. But, I don't feel like that's it. She continues to have no appetite, her weight continues to drop and we still have to run the g-tube at a slower rate to prevent intense pain and screaming with occasional vomiting when she wakes up.

Since November she's dropped over 3 lbs. Like I said before and continue to preach to everyone, we are losing ground. Weight management is key to cf lung health and we've pulled out about all the tools. We begged, and borrowed and pushed Olivia to eat more until we were all so darn sick of food and meal times and all for not. She's at and always has been at the maximum dosage of enzymes to help with malabsorption. She's been on a PPI (prilosec) to decrease acid in her stomach. We've used periactin as an appetite stimulant and when all else failed, we went ahead with the g-tube with the hopes that the weight struggles would minimize and here we are, having pulled out all our tricks and we are no better off now, probably worse actually, than we've been for the past 5 years. It all feels very grim really, when you do every darn thing you can to combat the crap of this disease and it still just isn't enough, it'll never be enough, not until there is a cure and this just all goes away.

Watching Olivia with no will to eat and having to run her g-tube so much lower for her to tolerate it is heart breaking. Heart breaking because I know how hard I've pushed and worked to get her to gain weight or manage it and to watch all these efforts fail and not work, I literally feel like she is going to starve. I feel like she will continue to lose weight and then her lungs will falter and there it is, cf doing what it does to destroy and wreak havoc and try to steal lives away.

So for now, Jeff and I decided to try the periactin again. I hate what it does to her mood but we need to do something. We can't let months continue to pass by as our team continues to try to figure out what is going on while her weight continues to drop. So we will try this and see if helps and wait to see what our GI team suggest next. We will continue to run her g-tube at a volume and rate she will tolerate and we are also continuing with counseling, hoping that may help with the rightfully so anxiety of all that Olivia must endure and we continue to pray and hope that she can gain back some of the weight she's lost before cf begins taking an even bigger toll on her than it already does.

Tuesday, April 14, 2015

Gastric Emptying Study

Currently , we are sitting down at the U of M Children's hospital as Olivia undergoes her next study to try to solve some of her GI issues, the gastric emptying study.

For this study, Olivia had to have an empty stomach. We stopped her g-tube last night at midnight so her belly should have been good and empty. We arrived at 9:00 this morning and Olivia was given an egg and toast breakfast to eat. She was to eat two full eggs containing radioactive material and two pieces of toast. We knew this would prove to be the hardest part. She never eats breakfast since her g-tube placement. She was given 15 mins to eat this, clearly that didn't go so well. She did her best and pushed until she was gagging and even though she wasn't able to finish the eggs, let alone the toast, we still proceeded with the test and will see if it proves useful or not. We are hoping that she ate enough of the eggs so that the scans will still give us an accurate idea of what is going on in her stomach. She had her first MRI scan at 9:50. We will do one scan per hour for the next four hours and see how things pass.

Now we will sit and wait for the next scan and hope that this isn't all for not; that they don't make us come back and try it again when Olivia can eat all the eggs. Hoping for good things.

In positive news, a fellow cf mom posted this amazing update on her blog about her son with cf who is just one day older than Olivia. It is filled with so much exciting news and hope and reiterates the importance of every dollar raised that goes to the CFF. They are doing amazing things and venturing down different avenues which I love the whole 'not putting all your eggs in one basket' approach to science. It was uplifting to read yesterday in the midst of all the struggles we are currently facing.

The link to the blog post is below:
http://bennettgamel.blogspot.com/2015/04/seriously-how-close-are-we-to-cure-cf.html



Wednesday, April 8, 2015

GI Saga continues & Dreams For Olivia - Save the Date!

Catching up . . .

We love St. Patty's Day around here. This year however, since we had Olivia's Endoscopy and MR Enterography hospital procedures the day prior, we, meaning me, didn't have quite enough time to make it into a big hoopla complete with a rainbow dinner like we did in years past.

I did manage to create a treasure hunt game for the kids to find their gifts. Landen loved the treasure hunt since he was able to read all the clues and both Olivia and him had fun running throughout the house, from room to room, to find their treasures at the end of the rainbow. They both received a Minecraft toy along with a rainbow (skittles) and gold coins (rolos).



Since the results of Olivia's Endsocopy and MR Enterography were somewhat inconclusive, the following week we headed back down to the hospital for an Upper GI Barium Study. As always with doctor visits and hospital visits, Olivia was nervous and scared but this visit to the hospital was one of the quickest yet. I was initially told Olivia would have to drink the barium solution as they needed to track it down the esophagus, which was the hardest part for her to be laying down flat on the x-ray table, lying still while having to suck down the barium goop via a straw. Come to find out at the end, she could have had it given through her g-tube, which is what we initially advocated for, but so it goes. She made it through and even though she didn't drink much of the solution it was still enough to show that she didn't have an obstruction where they were questioning it from the weeks prior procedures. So we went home and awaited what to do next to try to figure out the never ending GI issues Olivia continues to experience. 

The last week in March was Landen's spring break from school, which everyone in the household was looking forward to. As it so often seems to go, CF pops up and rears its head always at inopportune times, however, there never is an opportune time either. So it was no surprise on the Monday beginning Landen's spring break, I was contacted by the clinic and told that due to the large amount of backed up stool that was evident in all the scans that Olivia had undergone over the last two weeks, that our GI team wanted her to do a Clean Out. Initially, I was told to come into the hospital the following day and plan on a 1 to 3 day hospital stay to perform the clean out. Jeff and I later discussed this and decided that we'd try it at home first, given her anxiety and fears with the hospital already and the fact that she'd been there twice in the past two weeks. 

Thus on Tuesday, we were given instructions to mix 7.5 capfuls of miralax with a 32 ounce bottle of gatorade and administer that via her g-tube starting at a rate of 60 mL/hour bumping it up quickly to a maximum rate not to exceed 200 mL/hour. The goal was to pump in as much miralax into her system as quickly as possible to flush her out completely. We were instructed to do this until her stools were nothing but liquid. So we hooked up her g-tube and she carried her backpack around from 2:00 pm until bedtime. We stopped running the solution at bedtime and by the next morning, she was fully cleaned out. Since she cleaned out fairly quick, we were glad we opted to stay at home for this. I had been giving her 1 capful of miralax/day for about 5 days prior so both Jeff and I figured that she was already beginning to get cleaned out given the small amount that was passed before she was fully cleaned out.

At this point we were able to start her back up on normal food  via mouth and start running her nightly g-tube feed trying to get back up to the goal amount of 75 mL/hour to see how she would do eating via mouth and tolerating her feeds. Also, rather than give her miralax every other day, we were told to continue giving her 1 capful everyday, see how the rest of the week went and then report back if we didn't notice an improvement. 

I was thankful we were able to clean her out quickly as I had promised the kids we could go bowling and to the arcade over Landen's spring break. On Thursday we were able to make that happen. The kids had so much fun and it was so sweet watching them bowl. Landen did a good job rolling it down the lane and Olivia's rolls were more like a basketball bounce, but bless her heart, she wanted to do it all by herself and tossed that heavy ball down the lane for 2 full games. 





After the clean out, things started out okay and as both Jeff and I had anticipated, slowed down considerably. As the week progressed, the amount of food/drink she'd choose to eat by mouth was very small. We were able to bump up her g-tube feeds to 70 mL/hour. She'd continue to wake up squirming or crying slightly in pain, but no vomiting and she'd quickly come out of it once she was up. Not great but not quite as bad as over the past 4 months so we had a bit of hope. 

We managed to make it Easter. We opted to stay home and celebrate solo this year, given the week and given the fact that we believed we were riding out the calm before the storm. It's much easier to run the g-tube at home and deal with the unpleasant ramifications should they arise here rather than elsewhere and since we needed to run the g-tube at a higher rate to check the tolerance since the clean out, we stayed put. We had a Perkins omelet and muffins brunch, which was great followed by a chilly outdoor Easter Egg hunt in the afternoon. The kids made the most of it and had a blast:





Easter evening, when I bumped her rate up to 72 mL/hour that was the tipping point. She woke up Monday in a bit more squirming pain and crying but no vomiting and she did overcome it. Yesterday morning however, after running it again at 72 mL/hour, she woke up screaming and squirming in quite a bit more pain and proceeded to vomit and stool out every last thing in her system, repeatedly until the point of dry heaves. Exhausting, on so many levels. How awful for Olivia to begin her days waking up in pain. Puking sucks, and to do it right off the bat, in the morning, and this has been going on for so long. I can't even imagine. To be screaming in pain, it breaks my heart. 

This whole cycle has been playing out since November, and we are no closer I feel, to figuring this out then we were back then. All we can do now, until we can get some answers is to decrease the rate on her nightly feeds and go from there, or discontinue the use of the g-tube all together. Since her eating during the day is so poor and having to decrease her nightly rate by 1/3 to a tolerable amount, well we won't gain ground in the weight category and will continue to lose it. However, with that being said, Olivia's struggles with anxiety, while lessening, are still there. I've voiced my opinion to everyone involved in her care that there are definite reasons for her anxiety. The hospital visits, the ever-so-often clinic visits, the procedures we put her through, the waking up in pain, the vomiting, those are all very good reasons. I've said that until we get this figured out, anxiety will be there. For all we put her through to try to figure this out, the fact is, it's not better. We continue to tell her we are trying to help but when we put her through one test after another and the pain and occasional vomiting continues, how really do we expect her to have faith and not be nervous or scared? 

I've been instructed to get her counseling, which we did attend our first appointment yesterday. Even there, the counselor said there are definite reasons for her anxiety and that from what I said, we have a good handle on it. We will continue to go and I asked if the counselor would meet with just Olivia going forward to see if she'd open up to her when I'm not there so we have a plan but honestly, until we get these GI issues solved or lessened, I honestly don't think anything is going to help much in way of Olivia's anxiety. 

I was told by the GI team yesterday that anatomically, Olivia's gut is normal, The results that proved otherwise were the result of all the backed up stool. I don't know if I fully buy this yet as I was told that wasn't the case initially, but I've been told more than once her gut is normal since then so . . .

I haven't been given information yet on what the next steps will be regarding getting to the bottom of Olivia's GI issues. The vomiting and nausea and every morning pain isn't "normal" and the fact that it's likely Olivia will eat a bit less because of her overnight feeds, the amount that she doesn't eats is excessive. We all agree on this, now we just need to continue pushing on to get things figured out. The next step may be a 1/2 day hospital procedure to test for the delayed gastric emptying. This shouldn't be too bad, just another hospital visit, as it involves Olivia eating something with a radioactive piece in it so they can watch how it moves through her system. In the meantime, I've requested that someone review all the procedures she's undergone and then get back to me on what to do next. 

Initially, I told Olivia my hope was to get this stuff figured out by summer so we could enjoy the few months of glorious weather around here, my hope in that is quickly diminishing . . . 

anyway, on to Happier News -

SAVE THE DATE 
Saturday, May 30th, 2015
Dreams for Olivia Golfing Event benefiting the CFF.

Stay tuned, more details to come!