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.

jordan on January 10th, 2008 at 11:53 pm #

LOL! All our kids have had that same reaction to the nose bulb – even now it is one of the most feared parent torture implements in the house… Worse than the red syrup in the little measuring cup, or even the dreaded thermometer (at least they are digital now). It still gives them the willies to look at the big blue thing

Brendan on January 11th, 2008 at 4:00 am #

Ah yes, the dreaded snot sucker. My kids hated those. However, it motivated them to learn to use a Kleenex pretty quick.

She’s looking mighty cute Mr. and Mrs. West. Been praying for healing, peace, and blessings.

Matt, Abby, Austin & Caed on January 11th, 2008 at 5:08 am #

Abby and I continue to pray for you two and that sweet, sweet baby girl. (just so you know…we have no less than 5 of those blue sucker things in our house and one in Abby’s car – our little Turkey likes to surprise us by spitting up occasionally…out of his mouth and nose!) May God continue to hold all of you in His arms and surround you with His peace and healing. May He bless Ella’s “team” with wisdom, discernment and skill during her care.

Steven and Terri Trainer on January 11th, 2008 at 5:23 am #

You go Tina!! If I’m ever sick, I want YOU on my research team. How wonderful that you have that gift AND a medical team that will pay attention to info you provide.
I love the stories about “normal” baby stuff…bath time, the dreaded snot suckers, poopy pants, etc. How special they are in the midst of so much medical stuff!
Hugs, love and prayers heading your direction – T

The Brittain Family on January 11th, 2008 at 5:46 am #

Go Mom! We’re so glad that Ella’s doing well overall and know it takes time to get the balance that works right since she’s such a little trail blazer. The Lord saw her through a big day yesterday and we pray for her continued healing and strength.

Joel Snyder on January 11th, 2008 at 6:42 am #

Ella, I guess you decided that you didn’t want that line in anymore. Good for you and I am praying that some of the new ideas in your treatment will help you progress. Tina and Josh you are both “Out of the Box” when it comes to Ella. Thank you for the wonderful care and effort you are giving her. I Love you guys and will check with you later today. Love,Grandpa!!!!!!!!!!!!!!!!

Lesli Richards on January 11th, 2008 at 6:44 am #

Oh, the boogie bulb! That brings back memories. When we had Luke there were two of them in the isolete. When Brendan brought Rebecca to see the new baby she was in complete denial that she wasn’t the only child anymore. She pretended he wasn’t even in the isolete, but grabbed the two blue snot suckers and said “Look! Maracas! Let’s make music!” Yes, they are a wonderful NORMAL part of parenthood, even if you have you get your kid in a half nelson and invite the whole neighborhood to listen in on the hysterics. Congratulations on the milestone of the boogie sucker. I wonder if they make a card for that? Good for you, Tina! Remember, YOU are your child’s best advocate and medical researcher. You will be ready to get your MD in brain chemistry by the end of this.

Love, Lesli

Lizotte Family on January 11th, 2008 at 6:57 am #

Ella is kicking butt and taking names. Those pictures are the best I love them. I gotta say that Sylvia hated the bulb.. but Roni loved it! I found a short stemmed snot bulb and it was her best friend. We have a household of nasally congested folks and in unisom no less! 🙂
Praying for a good days to come your way.

John & Estela on January 11th, 2008 at 7:55 am #

Tina and Josh, God bless your continued “Out side the box thinking” when it comes to Ella and life. I pray that the change will make the difference. Only God can guide us to these KEYS. Love you guys and may God bless your weekend.

Joan and Steve Odell on January 11th, 2008 at 8:01 am #

A wonderful end to another touchy episode. She looks so good – prayers always coming your way – hugs – Steve and Joan.

Tammy on January 11th, 2008 at 7:14 pm #

Oh that dreaded “nose sucker”, as my son used to call it. I haven’t met a baby yet who asks for that voluntarily!
Hats off to you and Tina for searching for the answers to questions/situations with Ella that just don’t seem right to you. Sometimes the families are so right on that it’s scary. The lord gave us instinct for a reason……I believe parents have a double dose!!!!!!
God Bless

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