Posted (Tina) in All Posts on July-3-2010

Shortly after I posted on Thursday night, Ella pooped (10pm). Unfortunately, it was still loose with mucous and blood.

Since the stool was still questionable, they opted to try continuous feeds. We started the continuous feeds at 12:30am on Friday. We were hoping that if it ran all night, we could have the GI team examine any stool on Friday. When the GI doctor visited us on Friday, he mentioned that as long as the stool was not offering anything questionable, we could be discharged and work on the feeds at home. Also, he wanted to give her another one time dose of steroids for the inflammation – this morning it was Prednisolone. He still wants us to follow up with an allergist to have Ella tested for food allergies, but this can be performed on an outpatient basis. Also, the GI doctor also wrote for a script for Sulfasalazine. Sulfasalazine is used to treat bowel inflammation, diarrhea (stool frequency), rectal bleeding, and abdominal pain in patients with ulcerative colitis, a condition in which the bowel is inflamed. Although it is taken mostly by patients with irritable bowel disease, it works by reducing inflammation (swelling) inside the body which is what is happening with Ella’s intestines right now. Ella will now start taking this medicine three times per day. Wow, yet another medicine to add to our daily regimen.

I was hoping that Ella would poop on Friday. No such luck. Now, it is Saturday at 9:30pm and still no stool. I imagine that is a good sign – heck, we were having diarrhea for weeks. So it would seem that her body is working on absorbing the nutrients and calories more. But the poop is what we really need to confirm that suspicion.

If we can get her to stool, the GI team wants to take a look at it under the microscope to help further diagnose. If it isn’t loose and has no blood, we are going to plan to go home and try and work out all the feeding on our own turf. One thing is for sure: we will be working on the food tolerance as soon as possible. It’s been tough in the hospital to have Ella connected to the food pump all the time, yet she is contained in a crib all day. At home, she is way too active and mobile. I’m already prepared that if I am not cleaning up diarrhea, I will be cleaning up formula. She moves around so much and the food line is not real long. Inevitably, we end up feeding the blanket, carpet, etc. And sometimes, she even pulls her g-tube out completely. Then, you have gastric juices everywhere too! So the sooner we can shorten the duration of being connected to the pump, the better.

Please pray for solid poop. We’d really like to go home and enjoy the Fourth of July.

Hebrews 10:23 (NIV)
Let us hold unswervingly to the hope we profess, for he who promised is faithful.

Julie on July 3rd, 2010 at 8:37 pm #

But praise God for mobility! So glad that she’s up and moving around!

Debbie Bennett on July 3rd, 2010 at 8:54 pm #

I haven’t commented much, but we pray for y’all all the time. John is on continuous feeds during the day, too. We have a special pump (Entera Lite) that is actually carried around in a backpack. It very small and lightweight. You might want to check into it… Love from fellow CDHers in South Carolina!

julie kirk on July 4th, 2010 at 12:35 am #

praying for a good poop….love from saudi arabia

dana Orbaker on July 4th, 2010 at 12:38 am #

Ok Miss Ella, i’m praying for solid poop tonight so that you all can have 4th of July at home. Hugs and kisses to the West family.

Loren L on July 6th, 2010 at 6:57 am #

I hope you get to see something more solid from Ella soon. David was on Prednisolone for 5 days, two weeks ago, he had a congestion and his eczema was covering him from head to toe. We also did the allergy test, but they found nothing wrong there. blah!!! hope you have better results. Ella, take a brake for mommy. Tina it sure sounds like you have your hands full. Ella looks so pretty!

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