Today was a tough day, for Ella and her parents.

We called in to check on her this morning, only to find out that she was having another rough morning since 4am. They switched the continuous feeds to 30 ccs/hour on Friday night and since then, she has not responded well (continuous feeds go from midnight till 8am). Nurse Janet stated that she seemed uncomfortable, was retching and gagging (basically doing everything except throwing up because she can’t since her nissen surgery).

When she coughs and retches hard, it is like dry heaving which cannot be comfortable, so it makes her upset. When she gets real upset, she can’t catch her breath and that scares her, so then it becomes a vicious cycle.

Thank God that Nurse Janet has her tonight again. We have requested that they consider lowering the food volume back to 25 ccs/hour, to see if that makes any difference. We’re not sure if that will happen or not.

Maybe her tummy is just getting too full and is not ready to handle the additional volume. If that is contributing to her discomfort, I can’t imagine a worse feeling without a way to get rid of it. Plus, she has been having intermittent fevers and an elevated heart rate. Today it was 180 at rest and up to 220 at times. Later this evening, her stools were loose.

All of this has made her extremely irritable and fussy throughout the day. She is trying to let us know that she is not feeling well and is having some discomfort, but no one can figure out what that is exactly.

Aside from the change in food, they changed her evening dose of lasix to be administered via her g-tube on Friday too. Her elevated heart rate and lower saturations have been indicative of respiratory stress in the past. So, this has also been considered as a possibility.

It is weird – – she will be content while you are holding her and out of no where, she will start crying really hard. You will switch positions or try something else and she is fine for a few minutes, and then she will get unhappy fast. So, it almost seems like whatever is happening, the pain comes on suddenly.

Today, they tried giving Tylenol a couple of times to see if that would ease discomfort. Also, they tried increasing her oxygen to 1 liter – – that did not seem to make a difference. The nurse tried venting her g-tube more often (before as well as during the feedings), thinking that might ease her if she is having tummy discomfort. But she reported that it would work well for one feeding but then didn’t seem to make a difference when she tried it later in the day. They looked at her gums again to see if she is teething as well as her ears for a possible ear infection. They just are not sure what to make of all of it.

They took a chest x-ray in the early afternoon. The good news is that Dr Saxonhouse reported that it looks better than her last chest x-ray on 12/31/07. So maybe she is not having respiratory distress and that she is tolerating the lasix being delivered via her g-tube. Her urine output was excellent yesterday and is in line with what it was when she was only on straight diuretics via IV. This is a promising sign. Please pray that she can continue to tolerate the lasix via the g-tube without any compromise to her lungs. If she can tolerate it, we would like to have more of her diuretics administered via the g-tube as the week continues, so we can remove the central line.

Ella is due to have labs in the morning. They will check all her electrolytes and it will let them know if they need to adjust anything else for her, including her diuretics. As a side note, Ella weighed in at 10 bs, 8 ounces last night, which is good weight gain for her and a good sign since her urine output is high (not likely due to fluid retention).

Finally, she is scheduled to have an EEG. Please pray that she will tolerate the test. We are looking for the results to give us a better idea of how her brain pathways are working. The idea was to have the test completed early in the morning, so the results will be available by the time we have the meeting with all the doctors at 3pm. Remember that she has already had an MRI, but they want the EEG to balance out the test and give them more information, so they can give us an accurate diagnosis. Because they can come to the bedside to administer the EEG, we were hoping that Ella would be assigned to a nurse that is familiar with her. We expressed our concerns and so it looks like Nurse Marla might have her, which would be great.

In between her fussy spells, Ella was still being herself, as seen above. I think the smiles were good medicine for us, as we are feeling raw emotionally. It was as if the Lord delivered them at just the right time, to let us know that He is still in control and that Ella will be okay, no matter what the circumstances look like from the outside.

Please pray specifically for these things:

• they will figure out the source of Ella’s recent discomfort
• she can continue to show signs of tolerating her diuretics via her g-tube instead of IV
• that the central line does not cause any infection
• that her IVC although partially collapsed will not incur any further damage
• that the meeting tomorrow at 3pm will go well and that the Lord will give us wisdom and discernment for the best next steps for Ella’s care
• that He will strengthen and renew us – – we have felt weary the past few days

 
Thank you for joining us on the journey. We appreciate each one of you that has lifted us up to the Father.