Wow, it is late for a post but we just got settled into our room at the hospital. Here is a recap of events…

The last few days at home have been tough. We did try the new diet using Compleat Pediatric canned food. Ella’s system was not adjusting well. She was not retching, which is great. However, her intestines did not seem happy. We started to see lots of symptoms similar to her eosinophillic colitis diagnosis last July. First for 2-3 days, we couldn’t get her to stool. Then she became so backed up that we had the opposite problem. We were a bit scared because there were times where her belly was getting very distended. She seemed uncomfortable and then would have pass out spells, sometimes multiple in a row. All of that just reassured us that it was time to go to the hospital and make some forward progress.

We checked in at 10am this morning and went to the pre/post recovery area for the heart cath lab. When we weighed in, Ella had lost more weight – she was 12.6 kilos this morning (27.7 lbs). After the nurses got acquainted with her, the first item on the agenda was an MRI at 12 noon. It was a standard MRI with some extra testing for the vascular structure in her brain too. They administered Versed via her g-tube about 45 minutes prior to help her get sleepy. Then, they let me get in the gurney with Ella and take a ride down to radiology (that was fun)! Once we arrived, Dad went into the MRI room with her while the anesthesiologist put a mask on her face with gases to make her go to sleep. After a couple of tries, they were able to place an IV in the crook of her right arm. For those of you that have been following Ella for a long time, two tries for an IV is a high success rate. Then, the MRI lasted about 30 minutes and by 1pm, she was back in the pre/post recovery area for the heart cath lab.

There was some discussion about Ella possibly being placed in the ICU, depending on how the cath procedure went. She’s always done great before so we were not too concerned, but it was always a possibility.

Her heart cath procedure was scheduled for 1pm however they were running behind. We learned that they were doing a cutting edge procedure for another child that was just taking a lot longer than expected with some unforeseen complications. But it was amazing to hear – – they were replacing a heart valve via a catheter. For those of you that do not know, just google “heart catheter” to read how this procedure generally works and then picture them replacing a heart valve with that procedure. Wow…

In any case, we were more than understanding and just waited in the pre/post heart cath lab area until they were ready for her. Finally at 4pm, they came in to administer Versed via IV to make her sleepy. I put on a gown and carried her in her sleepy state over to the heart cath lab and stayed with her until they finally put her to sleep.

They call and give you updates each hour. The first hour, they called and told me that she was stable but they were still trying to gain access via her femoral artery. Apparently once that finally happened, the rest of the procedure went quickly. We were back in the pre/post recovery area around 6:15pm.

All of Ella’s pressures look better than they ever have in any prior cath procedure. Her SVC stents looked great too. The only thing they noted was a narrowing of one of the arteries coming off the SVC, so they went ahead and ballooned that vein to open it up more. Overall, her cardiologist was very pleased with how everything looked and joked that he was not sure why he was the least bit worried prior to the procedure. He was expecting a much worse condition and is pleasantly surprised how well the plavix is doing at maintaining the SVC stents. All of this to say that there was nothing uncovered to explain the pass out spells. Everyone’s best theory at this point: her system is compromised because of the diaphragm reherniation and doing the surgery will make the pass out spells go away. Time will tell…

Ella had to remain flat on her back for 2 hours after the cath procedure. They administered Tylenol to keep her more comfortable. Also, they kept checking her groin area on the left and right hand sides to check the sites. After a cath lab, they always want to check for excess bleeding. Also, there was some discussion about whether or not to feed Ella the Compleat Pediatric food. Josh and I both voted to not use food tonight; we felt that just IV fluids and bowel rest would be more optimal. It’s a tough call because you want her to have the calories when she is losing weight, but since this is not her regular food and she has a bunch of GI issues anyway, it just seemed safer to not give her food. Plus it would be different if Ella wanted food: but remember, she is so used to being fed on a schedule and has had such a poor experience with feeding during her life, she actually prefers to not be fed. So, we just felt like skipping a meal before her big surgery was not a bad idea.

After an extended stay in the pre/post recovery area for the cath lab, they made arrangements to send us upstairs. The only problem: there was some miscommunication and they sent us to the cardiac wing. That is typical protocol for a child that has gone to the cath lab. However since Ella has so many other unique issues, the pulmonary team likes to follow and manage Ella after any and all procedures. Once we started to get settled into our room around 8:15pm and realized we were under the wrong service, we had to advocate to get moved. Fortunately, we have an inside contact. I felt bad paging her at 8:45pm, but once I reached her and shared what was happening, she made a couple of calls and things started to change. We got moved over to the pulmonology service on the same floor within 15 minutes. We were even able to request a west-facing room (so you can see the mountains and city lights) and don’t get blasted with the sunrise. Boy, it’s all about who you know!

Praise God, Ella is doing great tonight – she sounds a little hoarse from the ET tube (endotracheal tube) and her legs seem like they might be sore from the cath lab procedure. I’m having the nurse see if we can give her some more Tylenol before bed, to help ease discomfort and make her sleepy. I’m hoping she rests overnight before the big surgery tomorrow (Mom could use some zzzs too). The surgery is scheduled for 9:45am. If the schedule stays intact and there are not any emergent cases, they would likely take her down about 30 minutes prior to the surgery. But as we experienced today, the schedule can always get pushed out. Once they start, Dr. Partrick expects the surgery to last 3-4 hours.

We’re hoping and praying that Ella can stay strong during the procedure tomorrow and start a solid recovery. The last surgery took 31 days at the hospital to recover, but it was emergency bowel surgery. We’re hoping this procedure is better tolerated and that afterwards, she decides to speed it up a bit and not get to know all the nurses on the 9th floor!

Surgery day can be another long day and crazy, but we’ll post as soon as we can tomorrow. Thanks again to everyone that has provided support – thoughts and prayers, meals, visits – all of it means so much in these times.

My heart is rested and thankful as I prepare for sleep: He has carried Ella through her first day of procedures.

Psalm 92:1-2,4
It is good to praise the LORD and make music to your name,
O Most High, proclaiming your love in the morning and your faithfulness at night…
For you make me glad by your deeds, LORD;
I sing for joy at what your hands have done.