Ella and I both caught rest last night, as the situation would permit. Being in intensive care means that they have to conduct vitals once every 2 hours. Each time they came in and started touching her, she would wake up and cry. Then, she kept crying because she was in pain. Now, the window between doses of Morphine has narrowed to once every two hours. If we don’t give her the morphine, she can’t sleep due to discomfort.

I wish that she was not outputting as much bile, but in fact she did output about 500ccs of dark green bile from her g-tube. The last time she passed gas or had a bowel movement was Wednesday morning. She had repeat abdominal films this morning – they are unchanged from yesterday. This is better than them looking worse although clinically, she is doing worse. She is in more discomfort and requiring more pain meds. Her belly is more distended. Last night at shift change they measured her belly and it was 1.5cm larger this morning. She is going in the wrong direction.

Upon exam this morning, the surgeon did a rectal exam to see if there was any presence of stool. His glove was clean when he pulled his finger from her rectum – not a great sign. If there was some presence of stool, they might try giving laxatives to help push it along. But if the obstruction is in her small intestines and is a full obstruction, giving laxatives is not going to help.

It is such a hard call for them. I think if she was a healthy toddler without other complications, the surgery would have already taken place. The first films on Thursday showed 6-7cm of dilation in her small intestine, which even in an adult, is huge and warrants immediate surgery. But because of all her other health complications and the fact that she was taking anti-coagulants as part of her daily medicines (aspirin and Plavix to help her heart stents remain open) caused great concern for the surgical team. With anti-cagulants in her system, it is a huge risk for bleeding in surgery. So, they opted to place her in intensive care and watch closely to see if rest for the intestines would lead to an improved status. The films on Friday looked better than Thursday, but still not good. Today, they look about the same as Friday. I’ve been told that they are coming by in about an hour to discuss which plan of action: wait longer or try surgery.

Thanks for all the prayers for sweet Ella. And please pray for me and Josh – it has been emotional to realize that she may need another major surgery – she’s been through so much already. It’s been even more difficult since we are at a hospital that is not familiar with Ella. We’ve been through this before when we first came back to Denver and Ella needed surgery. At that time, only Shands and Dr. Kays knew Ella.

We know that ultimately He is control. The Lord decided that this was the place for Ella to be when this obstruction happened. The truth: He orchestrates and authors every detail, only wanting the best but allowing whatever is necessary for His glory. Right now, we look to Him for our comfort and knowledge that whatever may happen, He is in charge of all the details.

This doesn’t make the emotional part any easier, so please pray for us as parents that He will equip us to make decisions for Ella today. And please pray for the doctors involved in this decision-making process – that they will have unsurpassed knowledge and discernment for Ella’s needs.

UPDATE 12:00 PM – By Josh
It’s time for surgery. It is more serious than expected. They’ll be doing a midline incision…didn’t expect that. There’s even a possibility of reherniation of her diaphragm. They think they might see some loops of intestines in her chest. Please pray for our sweet girl to stay strong through this process. She will be intubated for awhile as well. They have indicated this is a very big surgery, very high risk, and multiple issues to contend with.

Heavenly Father, we trust in you, we rest in you. Please watch over our precious child. She is your sweet girl. Her life for your Glory. Thank you Jesus. Amen.

UPDATE 7:30 PM – By Tina
WARNING: THERE ARE GRAPHIC IMAGES BELOW.


Thanks for all the prayers. Ella came through surgery like a champ. There is no question that she needed the surgery. It was confirmed that there was a large obstruction in her small intestine. The small intestine was very swollen and distended causing the large back up of bile and all of her discomfort. We are so blessed that they did not have to cut or resection the intestine. They pulled out her entire intestine to check all of it. None of it had died, so they did not need to cut any away. Instead, they just made a small incision and flushed out her bowels. The obstruction was in the small intestine, near her spleen. The surgeon noted that this was likely a problem that had been occurring for quite some time due to the scarring on the intestine. We have had small incidents like this before and that was a red flag that an obstruction was likely in our future. In previous days, it would resolve on its own without surgical intervention. Today confirmed that the surgery was absolutely necessary.

From the xrays, they thought Ella might have re-herniated her diaphragm. Thankfully, the gortex patch is still intact with scar tissue covering it (Thanks to Dr. Kays!). However, there was a portion of Ella’s intestine that was stuck to the diaphragm area which confirmed what they noted on film. Although this was not the area of obstruction, it may have become an area of concern, so they addressed that as well.

Ella is not out of the woods. The next 48 hours are absolutely critical. They expect her to get puffy and swollen and not look too good. She is intubated and on a ventilator. This was major abdominal surgery where they completely removed her entire intestine. Her body is going to be angry for a couple of days before it settles down and starts recovering. We just need to pray that she can maintain her fluid status (the docs here have not experienced Ella and fluids), and that she remains comfortable.

Thanks again for all the support and prayers. Our sweet little Bun is doing well and both of her grandmas are at the hospital this evening to provide support. We’ll update again tomorrow.

UPDATE 9:30 PM – By Tina
I thought that I would not update until tomorrow, but I did want to share that Ella has a temperature of 102.7 degrees. It might be a rough night. Please continue to pray for her!