Posted (Tina) in All Posts on December-22-2007

Sorry for the suspense – – it was a rough 24 hours or so – – for parents and Ella!

I came back from my business trip late last night. There was a snow storm in Denver and my flight was delayed 2 hours. By the time we made it back to Gainesville and in to the NICU, it was 1:30am.

I could tell that Ella was not feeling well. Overall, she seemed fussy and not consolable. Her stats weren’t great either. As you know from previous posts, this typically means that something is wrong with her lungs.

The last time I saw Ella was Tuesday night. That was the first night that I had not seen her look good. At that time, she was getting a blood transfusion. Once the transfusion ended, her stats went up a bit. But that was the first time since her nissen surgery that she did not look strong. I mentioned something to the nurse since this can typically be the start of a downward trend for Ella.

The next few days brought lots of activity for Ella: an MRI, a series of vaccinations, fever, switching her diuretics to oral versus IV, etc. Slowly over the past few days, it seems that her saturations were continuing to trend downward. Since there were so many changes, it made it tough to distinguish what might be going on.

First, they thought it was the lasix. They switched it to oral, but did not increase the amount. When you switch from giving lasix from IV to oral, you need to increase it in order to have the same impact (the gastric acids in the stomach lessen the effect). It took them one day to figure that out and adjust that component.

Then, they gave her several vaccinations. They gave her Tylenol to help with her fever, but we think that the vaccinations made her feel crummy (pretty typical).

During these times, Ella was having episodes frequently. When she would fuss, she was not consolable. She would get sweaty and decompensate to the point where she was not getting oxygen. It did not help that Ella was assigned to nurses that had never taken care of her.

The nurse practitioners are concerned about Ella, so they started to run a bunch of tests to figure out the problem. They took a blood gas, it was fine. They did 2 CBC’s within the past 24 hours; those have checked out fine too. The chest x-ray yesterday seemed okay, but the one this morning showed something in the left lung. They think either infection such as pneumonia or atelectsis. To be safe, they started antibiotics in case there is infection.

Based on Ella’s history, we think that it is her lung collapsing (atelectsis). Everything points to that versus an infection. Today, they tried adding 2 more diuretics; they are thinking that this might help. Also, instead of putting her back on CPAP, they tried increasing the flow of oxygen (first to 800 ml, then to 1 liter).

Tonight, her oxygen is set at 1 liter and she looks better than she has in days. The oxygen was increased around 7pm and we think it has made a big difference. She is asleep – – her heart rate is 150 and her saturations are 100.

She is scheduled for another blood gas in the morning and another chest xray. If her saturations dip below 98, there is an order to increase her oxygen flow up to 2 liters. This is what they will try to prevent going back on CPAP. If she has to go back on CPAP, they will put her back in NICU 3.

We are hoping that the increase in diuretics and flow of oxygen might be the ticket to getting her over this latest challenge. Please continue to pray for our baby girl. We are still holding out hope that we can take the Bun home soon.

Please pray for our health and peace too. We are switching apartments this weekend and are trying to get everything set up and ready for Ella. We are trying to accomplish so much within a few days, and we definitely do not want to get sick.

Thank you all for joining us on our journey and for your continued prayers. We praise and thank the Lord for our beautiful baby girl.