Posted (jooosh) in All Posts on January-10-2008

What a topsy turvy day for our girl. When we left her last night, she was sleeping, and she kept that up all the way until 4am. She woke up very upset and needed to have her oxygen increased. Nurse Linda said that she was very hard to console, similar to what we saw the night before.

Later in the morning, Ella was assessed by the nurse practitioner. Her lungs sounded more “wet” then they were previously, and her clinical behavior indicated how uncomfortable she was feeling. They decided to give her an IV dose of Lasix to hopefully keep her ahead of a very bad downward trend.

It seemed to have worked because as the day went on Ella looked to be improving. Her overall behavior was better, she was not as fussy, pretty consolable if she did get upset, and she didn’t need to have her oxygen increased. She did require a lot of cuddling though, which is not untypical of the Bun.

Another change that will hopefully have a positive impact was based on some research that Tina did last night. Tina found a study online that described the absorption rates and bioavailability of loop diuretics (both Lasix and Bumex). One study described the affects of having the diuretics administered on an empty stomach, compared to a full one. The other study described how high pH levels in the stomach can have an impact in the effectiveness of these two loop diuretics.

She faxed the papers over last night to the NICU and the nurse practitioner and Dr. Kays talked about it today. As it turns out, Ella has been receiving a regular dose of Zantac to help with her reflux symptoms. Zantac increases the pH of the stomach acid, making it less harmful to the esophagus. Based on the described study though, it could also be having a negative impact on the effectiveness of her PO diuretics. It was decided to discontinue her Zantac since her nissen procedure minimizes her need for it. They may also coordinate administering her diuretics when she has more of an empty stomach. Maybe this was part of the transitional mystery for Ella. The next couple days will be telling.

We were glad to see that nurse Andrea had her today. She’s known Ella from pretty much the beginning of our journey (you can see her “sitting the ECMO pump” when Ella was 8 days old). She’s one of the original “Fab Four” and has been there to see Ella through a lot of her rough times, and to rejoice during the good times. She’s even been tough with me when it was appropriate. Like turning the monitor away from my eyes when I was fretting about it, and telling me to just “look at my baby”. Good stuff =).

Even with all she’s done for us, the Bun decided to give her a pretty good scare today by insisting that her CVL (central line) be removed ASAP. Around 3:30pm Andrea was holding Ella and when she went to put her back in bed she saw that the end of her CVL was broken off. A few drops of blood started to come out, so they disinfected the line and clamped it off. Dr. Kays was notified and he removed the central line later in the afternoon. You can view a timeline of these events from our earlier post today.

It looks like the CVL came out without issue, but it did require giving Ella a shot of local anesthesia which she was not to happy to receive. It also sounded like the procedure wasn’t too fun to watch because I heard that Dr. Kays mentioned to Andrea that Ella was taking this better than she was. You can bet that I would have been passed out on the floor had I been observing the procedure.

After the CVL was removed, Andrea gave our girl a “real” bath. This is the first full bath she has had since before Thanksgiving! Not like she didn’t get cleaned up, but Ella likes her bath time so we’re excited that we can start these up again.

When we went in to see our girl this evening, she was passed out in her swing. You can see a couple of the pics we snapped in the slideshow above. The moment we saw her, we felt that she looked a lot better. Once we were holding her, we could tell she was feeling better. She wasn’t fussy, and she seemed pretty content.

The only issue she was having was a good amount of nasal congestion. This makes it hard for Ella to breathe, and when it builds up, it needs to be suctioned out. Holy moly Ella does not like this! Man, when she sees that suction tube coming at her, she just starts getting upset. You need to hold her too because you don’t want her flailing around when there’s this tube being poked up her nose. I’ll tell you though, she turns into a little bluish incredible hulk. She is one strong girl. She scratched Tina on the face pretty good and threatened to throw me across the room. Can’t wait to see what these episodes look like when she’s 4 or 5. Yowsa!

The coming days will tell the true story of how Ella is doing. If it turns out that her PO diuretics are not working, she’ll let us know, and they may need to start a peripheral IV to keep her on track. Hopefully it won’t come to this. Please join us in praying that the transition to PO diuretics will be a success.

Continuing to trust in the Lord in His timing. We are so blessed by this little girl. She has had such an incredible impact in our lives, and it blows me away to hear the stories about how she’s impacting others.

Thank you Jesus for blessing us with the gift of Ella Renae.

Posted (jooosh) in All Posts on January-10-2008

3:30pm EST
We just received a call from the nurse practitioner. Ella decided she would try and remove her central line herself! Instead, it snapped in half outside her body spilling some blood. Dr. Kays is now in the process of removing it completely at bedside in the NICU 2.

Please pray for a safe removal. As we mentioned in the previous post, there are some higher risks with removing this line based on Ella’s condition.

We’ll update again once we know more and write a complete post with pictures later tonight.

UPDATE: (4:45pm EST)
Dr. Kays has not removed her central line yet. He went down to evaluate her and she’s stable for the moment. He had another obligation to attend to, but as soon as he’s done, he’ll be back to remove her line. We don’t have an exact time of when this will occur, but we were told it will be happening today. At the moment our girl is sleeping peacefully in bed with her central line clamped off.

UPDATE: (6:45pm EST)
Dr. Kays was able to successfully remove Ella’s CVL (central line). Thank God! Ella tolerated it well and nurse Andrea said that she’s had a pretty good afternoon too. They’re starting Ella on a regiment of low molecular weight heparin to minimize other potential clotting. We’ll give a full update later tonight. Thanks to all of you for the support and for petitioning our Lord for her safety!