Posted (Tina) in All Posts on June-29-2010

It has been an eventful 24 hours for Ella.

Last night, the doctors wanted a set of labs as a baseline before her procedure. The night shift tried, but they were unsuccessful (after jabbing around several times). We were not up for more of that activity, so we just put our foot down and told them to wait until the AM.

The main reason for coming to the hospital before the procedure was for them to empty out her intestines adequately. So starting around 6pm yesterday, they started giving Pedialyte and Miralax every 2 hours. Amazingly, she had only 2 rounds of diarrhea that night. And for some reason, she was still up and partying at 1am – standing up in the crib and babbling. She finally retired at 1:30am and I followed shortly thereafter.

I fully expected to be woken up several times to diarrhea. After all, the nurse was coming in every 2 hours and giving more Pedialyte and Miralax. But no more diarrhea output. By morning, they decided that if she had not gone adequately by 11am, they were going to order an enema to help move things along. Apparently when they prep you for a colonoscopy, the output has to be clear (you have to really clean out your system so they can see with the camera).

This morning, they stopped the Pedialyte and Miralax by 8am in preparation for the procedures later in the day. Around 11am, the charge nurse was successful on the 2nd attempt to get labs. All her electrolytes came back looking good, including her potassium at 3.8 (we’ve been giving a potassium supplement 4x/day since we left CHOC, so its good to know it has been working). They wanted to get an IV in her before all her procedures started to avoid any dehydration. But since we could tell that she was doing fine along with it being such a challenge to place an IV, that is where the advocating started this morning. I pushed to see if they would wait until her procedure – why not have the anesthesiologist place it once Ella was sedated? Finally, they conceded to wait until she was sedated.

They took her down to get her CT scan first. Ella enjoyed her wagon ride downstairs.

They let us go into the room and the anesthesiologist had her inhale bubble gum scented gasses that put her out. They wanted her sedated for the CT scan so they could get real good pictures and to ensure that she would be still. The last time she had a chest CT scan was in the NICU when Dr. Kays was trying to figure out and resolve her chylothorax. Her current pulmonologist wanted to take a look at her lung tissue. Before they left the CT area, the nurses needed to get an IV placed for access. Later, they reported that it took 30 minutes just to place the IV with 5 attempts (it is a bummer that it is in the crook of her right arm, opposite side of her elbow). We’re so glad that we pushed for her to get the IV under sedation. At that time, they also gathered a CBC which showed all good levels and a slightly elevated white cell count. This goes along with the recent stool sample that tested high for white cell count. Once again, just another marker of inflammation and unhappiness in the intestine.

From the CT scan room, they took her over to the GI area for her endoscopy and colonoscopy. So they took about an hour and went down through her esophagus, stomach and the upper part of the small intestine. Then, they went through her bum and looked at her colon and a portion of her large intestine.

Unfortunately, the area of real concern is in the small intestine where the surgery took place and it is not accessible with this procedure. The great news: everything else looks good in the lining of her intestine. Nothing looked scary or questionable to the naked eye. While they were there and she was sedated, they went ahead and biopsed from all the areas. The biopsy results should be back by tomorrow afternoon. That will confirm that there is nothing wrong with Ella from a disease standpoint.

If you’re curious, you can click on each thumbnail to see pictures of Ella’s intestines! The one that is interesting: the second thumbnail and the far picture on the right, you can see her g-tube!

As the documents reference, the images are “normal”, so this begs the question: what is wrong? Since they can’t look at the portion of the small intestine that seems to be inflamed and angry, there are many theories as to what might be wrong. Is it bacterial overgrowth? Is it still healing from the adhesions? Is there not enough blood flow getting to that part of the intestine? Is the intestine simply uncoordinated? In other words, her intestines worked on the obstruction for a long time. They were used to contracting like a muscle in a certain way. Now that there is no blockage, the muscle can be uncoordinated and not work effectively. Is all of this just a chronic GI issue from having a bowel obstruction and surgery?

If the biopsies come back with a diagnosis, we’ll start with treating for that diagnosis and it will explain the mucus and blood in the stool. If the biopsies all come back normal, then it is highly likely that we may simply have a chronic GI issue. It might just mean that Ella needs more time for her bowels to heal and function in a more normal way. This could result in giving her guts almost complete bowel rest while still giving her nourishment.

Yep, there is a chance that parenteral nutrition (PN) is in our future. For those of you who do not know, parenteral nutrition is feeding a person intravenously, bypassing the usual process of eating and digestion. The person receives nutritional formulas containing salts, glucose, amino acids, lipids and added vitamins. It is called total parenteral nutrition (TPN) when no food is given by other routes. As we learned in the NICU, TPN and lipids are like burgers and salad.

“Parenteral nutrition is provided when the gastrointestinal tract is nonfunctional because of an interruption in its continuity or because its absorptive capacity is impaired. It has been used for comatose patients, although enteral feeding is usually preferable, and less prone to complications. Indications: TPN may be the only feasible option for patients who do not have a functioning GI tract or who have disorders requiring complete bowel rest, such as the following: Some stages of Crohn’s disease or ulcerative colitis, bowel obstruction, certain pediatric GI disorders, e.g., congenital GI anomalies, prolonged diarrhea regardless of its cause, or short bowel syndrome due to surgery (The Merck Manual, 2008). ~ Wikipedia

We would go this route to help her gain weight, nourish her adequately and give her intestines a true break. After all, she’s lost 3 pounds from the diarrhea and not being able to take full feeds. Along with TPN and lipids via intravenous access, we would use minimal amounts of food via her g-tube with the food pump and slowly over time (months), work up to her guts tolerating food again. It may even mean using or trying a different food again.

So tonight, Ella has had some discomfort since the procedure. To minimize pain, they gave a one time dose of morphine. I’ve heard her with a rough cough a few times (from being intubated). By far, the main discomfort has been gas. When they do a colonoscopy and endoscopy, they fill the intestines with air. Before finishing the procedure, they try to minimize air by suctioning at the end, but it is never all eliminated. So as time marches on and she passes gas, she is feeling better. They did notice an anal fissure right inside her rectum which could be a cause of bleeding we’ve seen in her diapers. Plus, they did biopsy in several areas so she did have one diaper this evening that was filled with pinkish fluid. But of course, even with discomfort, she is still Ella. In those moments when she is not feeling any pain, she is standing up in her crib, smiling and being her silly self.

Until tomorrow, she is just on IV fluids. We’re hoping to get biopsy reports tomorrow afternoon that support what her GI doctor saw today with the naked eye. From there, we will need a meeting of the minds to determine the next best steps for the Bun. It will likely include some form of intestinal rehab.

Thanks for all the continued prayers for Ella. They are so appreciated during this time.

Here’s an excerpt from my devotional reading:

If we have completely entrusted something to God, we must keep our hands off of it. He can guard it better than we can, and He does not need our help. “Be still before the LORD and wait patiently for him” (Psalm 37:7).

Things in our lives may seem to be going all wrong, but God knows our circumstances better than we do, And He will work at the perfect moment, if we will completely trust Him to work in His own way and His own time. Often there is nothing as godly as inactivity on our part, or nothing as harmful as restless working, for God has promised to work His sovereign will….It is such a comfort to drop the entanglements and perplexities of life into God’s hands and leave them there.”

Terri Trainer on June 29th, 2010 at 8:56 pm #

Glad for the update. You’ve been on my mind today. Thx for the devotional…a reminder that I needed. Love you and miss you tons!

Fran on June 30th, 2010 at 7:15 am #

You all had quite a day. Thoughts and prayers with you my friends. Ella, your smile is contagious as always my sweetness!

Williamsburg on June 30th, 2010 at 7:28 am #

Thanks for keeping us in the loop. You are, as always, constantly in our hearts and prayers. Much love, XOXOXO

Dana Chambers on June 30th, 2010 at 8:03 am #

So Happy you are back in Denver! So Glad that they waited until she was under anesthesia – except for placement. Grateful that Josh starts a new job! Hopeful that Ella can someday eat normal food and enjoy a bowl of ice cream. Blessed to know you and have you in our hearts and prayers even at a distance.

Liz Nelson on June 30th, 2010 at 3:02 pm #

thank you for the update. You have been in our minds since Monday. I am amazed what Doctors want to do when we parents don’t speak up. Glad she was sedated for the IV. We have you all in our prayers.

Tara Hayes on June 30th, 2010 at 3:40 pm #

Daily prayers for precious Ella!
She is SO blessed with such amazing parents. I thank God for the two of you and what you do for that adorable girl:) many prayers for answers and much love,

Jennifer Harris on June 30th, 2010 at 3:57 pm #

Thank you for this update. GOD’S amazing grace will work this lower GI issue out and we’ll have no doubt it is HIS work.
Peace & Blessings

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