Thursday, March 19, 2015

MR Enterography Results

Monday when Jeff and I were sitting in the waiting room of the children's hospital surgery area for over 2 hours, we started talking about Olivia's past . . . how this whole journey started. 

There are so many memories and things from those first few weeks of her life, spent tirelessly in the NICU, that are a blur or that have been lost from my mind. Not all things, but certainly some, which in all honesty, is probably a blessing. That was a trying time, full of fears, uncertainty, helplessness and lost hope. Some things are best forgotten, but not all. I certainly know that in that period of shock, many things were told to us that went right in one ear and out the other, or never were even heard at all.

So it wasn't a surprise to me that on Monday when Jeff and I were talking about Olivia's initial intestinal issues and surgery due to meconium ileus at birth, there were clearly details I missed. Like when Jeff told me (complete with hand gestures as to how this process may have gone), that the GI surgeon literally took Olivia's intestines out of her body and placed them on a table to clean out the meconium, my mouth about hit the floor. Sitting there and mulling this over for a second, I looked at him and said, "How did he know that he put everything back in how it was supposed to go?" Jeff shook his head and shrugged his shoulders. 

We then proceeded to talk about the likely probability that because of her history and previous intestinal surgery that we wouldn't be surprised if things in her gut weren't how they were supposed to be. Statistically, because of her start with meconium ileus, she's at a higher risk of developing a intestinal blockage, we know this. But I also thought that perhaps given the x-rays upon x-rays she was subjected to after that initial surgery, something awkward or not right would have been caught within those first 2 weeks of life? Or how about the x-rays she's had since then that have shown portions of her GI tract, surely something off would have shown up perhaps?

Yesterday afternoon, I got a call from our GI doctor, Dr. Sarah. She said she had the results of Olivia's MR Enterography, immediately followed by "there is evidence that her gut isn't right". She rattled off a whole bunch of other stuff, but the just of what I got was portions of her colon that should be on one side of her body are on the other side, same with her small intestines, there are portions of the right side that should be on the left side. Her colon is also located in the upper left quadrant of her abdomen rather than the lower. And, there is also a portion of her small intestines that is dilated but they aren't able to see if it's partially obstructed or not based on the MR Enterography. 

The whole point in proceeding with the GI studies we had done on Monday were to hopefully eliminate the added x-rays for Olivia and radiation exposure in doing just the Upper GI study with x-rays. However, since the results of Monday's MRI are inconclusive, Olivia will need to have the Upper GI study done where she goes back in to the hospital, drinks the barium solution and has x-rays taken to verify if or if not there is a partial blockage in her small intestines. Thankfully, this won't require sedation. We are awaiting scheduling for this. I'm assuming we will see if there is a blockage before figuring out how to proceed with fixing the rest of her gut. 

As my heart sank, and I immediately wanted to panic, I didn't. I told Dr. Sarah, that at least there might be a reason for Olivia's nausea and vomiting and lack of appetite based on her "not right gut". I also calmed down knowing that this isn't anything new. Olivia has more than likely been dealing with this for quite some time. There is no way to tell if this misshaped mess is the result of her initial surgery, because of a blockage or what have you and honestly, it just doesn't much matter. What is most important is that we are on the track to hopefully getting some of this stuff figured out and fixed. I guess for as much as the g-tube has caused numerous problems for Olivia, it's also been beneficial in the fact that if she wouldn't have had the issues she has and as a result referring us to GI to proceed, we may not have discovered any of this for quite some time yet. 

I'm not glad that her gut isn't right, I'm not glad that this may require more surgery to fix, but I am relieved that there is perhaps a reason for her nausea, vomiting, stomach issues, weight struggles and lack of eating. I hope we can get her in for this next procedure fairly quickly so that we can proceed with a plan to "fix" the issues with the hopes that we can do it sooner than later so that our summer this year won't be cut short due to surgeries and hospital stays like last. 

Wednesday, March 18, 2015

Climb Success . . . GI Issues

Time has gotten away from me . . . the last weekend of February we headed down to the IDS Center for our 6th year climbing in the CF Climb event. We had a wonderful turnout and we are extremely grateful for the successful event we had again this year. We are blessed and beyond fortunate to have raised a very impressive amount for the CFF, bringing in over $14,500 and securing the title of the highest fundraising team again year! We couldn't have done any of this without all of our climbers who donated and fundraised their hearts out and climbed with us, every single one of you who made a donation to support our efforts and with the matching gift from the Polaris Foundation.



Thank You, Thank You, Thank You!

With each passing year, we are even more grateful for all of you whom continue to support us, digging deep into your pockets to give to that foundation which has the means possible to find a cure for Olivia and all those with CF. As Olivia's future success in battling this disease depends greatly on the medications and therapies that the CFF develops, we cannot express our gratitude enough. 

Jeff and I look forward to the CF climb each year, it's our favorite CFF sponsored event and the one where we actually feel the burn in our lungs and put forth the hard work of climbing up 50 floors of stairs, earning every dollar that's been donated on our behalf. Thank you again to all who donated, fundrasied and climbed with us.

Two weeks ago I took Olivia into CF clinic for a follow-up due to her weight loss and struggles. By the grace of God, or a miracle of sorts, I was very surprised that she hadn't lost any weight over the previous month but was able to maintain. Given that we don't push her to eat foods which in turn leads to her eating literally a few small bites each day, combined with the disuse of the periactin and having to slow down her tube feeds due to intolerance, stomach pains, nausea and vomiting, both Jeff and I were very surprised she hadn't lost weight like she had previously. Since we were basically there for a weight check, we were cleared to proceed with her GI studies and I was also retold to get her into a counselor to address her anxiety issues. Given the anxiety that is induced every time we have to go to clinic or the hospital, I suggested it'd be best to avoid added visits so we will come back in May for our routine follow up, pft's and annual studies.

On Monday, Jeff and I spent the day at the children's hospital while Olivia underwent her GI studies. She again requested that I stay with her the whole time so Anesthesia was nice enough to let me go back to the OR until she was asleep again this time. Having walked these hallways and done this 3 times now in the past 8 months, it's amazing the routine and familiarity of it. Olivia did well, she was of course scared and inconsolable but I was able to stay until she was under which was reassuring for me and I'm sure easier for her. I'm not sure to which point she remembers everything that is going on but she feels much better knowing that "I'm there the entire time". She knows I'm with her when she falls asleep and I'm there when she is waking up so to her, I never leave her side which is exactly how I want her to think of it, especially now with her high anxiety issues. 

Once she was asleep, she first had an endoscopy to check her esophagus, stomach and the opening into her small intestines. They were looking for anatomical abnormalities and/or any issues they may be able to pinpoint that could be causing the nausea, vomiting, lack of appetite etc. Four small biopsies were taken as well during this procedure to which we should find the results out next week.

After this procedure, an NG tube was placed through her nose into her stomach and placement was then verified with an x-ray in order to proceed with the MR Enterography. We were told by the MD who did the NG procedure that because of excess air from the endoscopy the placement wasn't as smooth as it could have been but after utilizing a few different tools it was successfully placed and Olivia was transferred over to radiology for the MR Enterography.  At this point, the barium contrast was given via the NG tube and the MRI was administered and completed. This procedure took over an hour. 

Olivia was in the OR and sedated from 11:00 to 1:50. As always, the hardest part for Jeff and I is the waiting and no matter what we have to occupy our time; time still seems to stand still. Around 2:00 we were told Olivia was beginning to wake up and Jeff and I were allowed back into the PACU while Olivia recovered. Same as last time, we could hear Olivia screaming before we could see her. She continues to have a hard time waking up and coming out of the anesthesia but this time wasn't as bad as last. This time she was screaming out "mama", as well as, "I want to go home right now". Jeff and I had to smile through the pain in our hearts of seeing our baby girl like that, just because that is so Olivia. If she would have been able, she'd have busted out of there. She was trying to break away as it was. As always, Jeff and I did our best to console her and comfort her while she woke up. It took a little over an hour and once she was able to have a few bites of her popsicle, a few sips of water and the nausea stopped, we were able to go home. Olivia and I again were given a wheelchair ride past the balloon station where she picked out her balloon and out to the car.  

We arrived back home around 5:00 pm and were glad for that. The day was forever long and Olivia was relieved to not have to stay in the hospital. Aunt Darci and Braelyn who were caring for Landen while we were gone, brought him back home shortly after we arrived and Olivia was glad to be able to play Minecraft with her best buddy Landen while doing her evening treatments. We all went to be early.

Thank you Darci and Braelyn for helping out with Landen while we were away, as always, we appreciate it so much. 

And now we wait. The doctors should have reviewed the MR Enterography by today but beings the biopsy results will take a week or so, I'm assuming we won't hear anything until early to mid next week. I hope that having put Olivia through these procedures will prove helpful and that we are able to rule out some things and confirm others that may be causing her nausea, vomiting and lack of appetite.