Posted (Tina) in All Posts on September-5-2008

Please pray for Ella. She is increasingly having a hard time breathing.

We had another episode overnight and they opted to give her an unscheduled dose of IV Lasix. Keep in mind that this was not really an incremental dose in diuretics since they did not give her one of her doses of Bumex yesterday.

We had labs this morning. Her BUN is 12 – – her lungs are wet. You can tell by her behavior and how much she is struggling to breathe. Right now, she is on 2.5 liters and her heart rate is fluctuating between 160-185, definitely on the high side.

Her nose is now officially raw and bleeding on the tip. Her cheeks and lips are close to skin breakdown.

Poor little Ella is just feeling rotten. Please keep her in your prayers today.

UPDATE: 8:00pm MST:
Thank you for all the thoughts and prayers. I am happy to report that Ella is doing much better this evening.

When the doctors came by to do rounds this morning, we explained how Ella’s clinical signs had worsened and now we had the labs to back it up. We advocated for Ella and expressed the importance of giving her extra doses of IV Lasix today. If we continued to let Ella go down this slippery slope and let her lungs become even more wet, we could find ourselves in a really bad place.

Fortunately, they looked up the chest xray after rounds and the images confirmed pulmonary edema. (Side note: even though she has been admitted to the hospital twice recently for this diagnosis, her chest xrays never showed pulmonary edema. The fact that they did this morning just indicates how wet her lungs have become). Also, when they did their assessment this morning, her lungs did not sound clear. She sounded like she was wheezing. Her chest xray has worsened just from the one yesterday morning. We certainly were not celebrating in Ella’s condition, but it was a great way for us to prove to them that we know our baby girl.

All in all, the staff here is fabulous. And the best part, they not only are realizing that we are very tuned into Ella, but we are giving them just enough latitude so that they can practice medicine and see that everything we are predicting about her care is coming to pass. We’re hoping this makes for smoother hospital visits in the future (we have completely accepted the fact that this is not the last time).

It is also nice to know that we are building relationships at the hospital. We have had 3 nurses sign up to be part of her primary care team. They have fallen in love with her and can tolerate us…and they WANT to take care of Ella. That is a great feeling.

As all three of us are breathing a bit easier this evening, we are once again praising our Father in Heaven.

Deuteronomy 32:4
He is the Rock, his works are perfect,
and all his ways are just.
A faithful God who does no wrong,
upright and just is he.