Last night around midnight and again this morning at 8am, Ella had two large diapers filled with blood. The amount was substantial, so they did another CBC and got a blood type and cross, in case she needed a blood transfusion. This required two sticks this morning around 10am. Otherwise, she seemed comfortable and was behaving normally, but they just wanted to make sure that she was not losing too much blood between the procedure yesterday and the aftermath. The likely cause of the extra bleeding is the blood thinners she is taking these days.
Most of the day was casual and simply in a waiting mode. She spent the day on IV fluids and horsed around in her crib in-between restful naps and video watching.
Finally, Ella’s biopsy results came back this afternoon around 5pm. The GI doctor was a bit surprised – he was thinking that the biopsies would be 100% clear. But, one came back with positive results: Eosinophils.
So, what exactly are Eosinophils (ee-oh-sin-oh-fillz)? They are white blood cells that help the body fight certain infections. Eosinophils are most commonly associated with allergic diseases. Eosinophilic gastrointestinal disorders are chronic digestive system disorders in which eosinophils are found in higher than normal amounts in areas of the digestive tract. These disorders typically occur in three areas: in the esophagus — eosinophilic esophagitis; in the stomach and small intestine — called eosinophilic gastroenteritis; and in the large intestine — eosinophilic colitis. Endoscopy and biopsy is the only way to confirm the diagnosis of EGID.
Her blood work from yesterday and today shows an elevated amount of Eosinophils intravascularly. The biopsy shows an unusually high amount of these white blood cells concentrated in her colon. They could be there for a few reasons and it takes a bit of trial and error to attempt to figure it out.
It might be that she is allergic to a food or medicine that she has been taking. We don’t tend to think it is an allergy to medicines because she has been on all the same meds. The only exception is the narcotics – methadone and ativan. We mentioned those to the GI doc, but he confirmed that those would not be tied to elevated levels of Eosinophilis in the colon.
We changed food in February of this year – we’ve tried Nutren Jr prior to surgery and both Nutren Jr & Peptamen Jr since surgery. Both of these are medically formulated foods for toddlers and children that have GI issues, but they are made from pre-digested (hydrolyzed) proteins. Generally, these are partially hydrolyzed casein or whey proteins (from cow’s milk) and are considered easier to digest. But sometimes a stricter diet – an elemental diet – is needed. An elemental diet means no protein, either in its whole or incomplete (pre-digested or hydrolyzed) form. Special elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Amino acids do not cause allergic reactions but whole or partial proteins can.
In the past, Ella was using EleCare from Sept 2008 – January 2010. EleCare is an amino-acid-based, hypoallergenic formula that is a completely elemental formula – everything is broken down already so the gut is not having to work hard. Interestingly enough, when I went to EleCare’s website, they phrase it this way:
The body needs protein for growth and maintenance of tissue. But some children are allergic to food protein, cannot thoroughly digest protein, or cannot absorb enough overall nutrition. Instead of whole or broken down proteins, Elecare is made of free amino acids — the building blocks of protein — and can help provide the nutrients needed for growth. EleCare (also known as an elemental formula) is specially designed for infants and children with food allergies, eosinophilic gastrointestinal disorders (EGID), short bowel syndrome (SBS), or malabsorption.
In other words, one theory might be that she is allergic or cannot tolerate foods like Nutren Jr and Peptamen Jr that do not have the proteins completely broken down. Maybe the irritation in the colon started way back in February, surgery just exacerbated the issue and once surgery was complete, we’ve seen all these GI issues with food. To see if maybe this is simply a food issue related to allergies and Eosinophilis, we are switching to EleCare tonight and going to give Ella her first feed and keep her on the IV fluids (in case she does get diarrhea). We’ll see how she does. The GI doctor stated that it might take 3-4 days to determine if she will tolerate the food, if it will eliminate the diarrhea and ultimately reduce the inflammation in the colon. This seems like it would be one of the easiest things that it might be although the long term impacts of only being able to eat elemental foods is not a fun thought.
The GI doc mentioned that it would be rare but maybe she has a parasite. This is another cause of elevated Eosinophils. They check this with a blood draw and stool samples. It has to be sent to an outside lab and takes 8 days to resolve. Finally since EGID is typically tied to allergies, they want to consult an allergist and do skin pricks and patch testing to see if/what might be causing an allergic reaction.
If we go for 3-4 days and the diarrhea/GI issues do not resolve, then we might have to try a round of steroids for several days to see if that treats the issue. If steroids don’t resolve the issue, then we may have to go home on TPN and Lipids for parenteral nutrition.
We’ll see how the next couple of days go with her on full EleCare feeds. Maybe if she does really well, we can go home and manage the remainder of the tests and other things on an outpatient basis? In some ways, that would be good simply because her doctor will not be on service next week. So as we go and try to resolve this, we will have another doctor driving the process. What we do know right now: there is still a lot of mystery and so we’re not sure how long we’ll be here.
Also, the real kicker: these are just the issues that might be tied to the confirmed biopsy results. Remember that there are still dilated loops of bowel in her small intestine where the surgery was performed. The tests we used cannot reach into that portion of her intestine to look at the lining and biopsy that area. This is why we are going to try and treat for the condition that we know we have in the colon. If that doesn’t work and eliminate all her symptoms, then it might just be that small intestine is truly causing the all the problems. This is why the parenteral nutrition would be used: to give the guts a complete rest and hopefully heal.
Praying for smooth sailing with the EleCare and a restful night of sleep. Also, tomorrow is Josh’s first day at his new job. We pray for a successful start to this new chapter.
UPDATE @ 10:30pm: Well, I fed Ella her first round of EleCare. About 30 minutes later, the nurse came in the room because her monitor showed her heart rate elevated in the 170’s, even as high as 185. I explained that it was probably due to the food. We usually see her heart rate elevate a little bit. I agreed with her – it did seem high. Then, about 15 minutes later the noise came. Gurgling diarrhea. I got up and paged the nurse so she could come and retrieve the stool sample and help me clean up. It was pure water with some mucous and blood. Very similar to what we see at home when we give food. Then, Ella was in a good amount of pain. She was crying and barely consolable for about 15 minutes. Once it passed, she seemed fine.
Well, I guess just changing the food isn’t going to do the trick. Since that didn’t go very well, maybe we’ll be starting steroids earlier than 3-4 days. Also, Josh and I still think that something might be wrong with her small intestine near the surgical site, especially considering the timing of the diarrhea once we feed her. If things continue on this path, maybe the TPN and Lipids with complete bowel rest is just what Ella needs. Please pray for discernment for us and the doctors as we make these decisions.
Psalm 33:22 (NLT)
Let your unfailing love surround us, Lord,
for our hope is in you alone.
