Posted (Tina) in All Posts on April-27-2010

Thanks for all the support and prayers…and for understanding that we were too tired to post last night!

Ella has been stable. They finished weaning the nitric oxide at 12:15am last night. This is the biggest thing they like to eliminate before moving us from the PICU. This morning on rounds, they debated her femoral central line. It has been in her leg for 2.5 weeks, which is a long time and makes it high risk for infection. So far, so good. But there is an increased risk each day, so they’ve debated a PICC line in her arm. We spent most of the day yesterday without giving her food in her belly in preparation for a PICC line, only to learn that the PICC line nurses would not feel comfortable giving her a PICC line (too many scarred veins). In order to get one, they would need to send her to Radiology to have it completed. They would not give us a set time and Ella would need to refrain from any food or water via mouth or g-tube for 6 hours prior to getting the PICC line. We felt like spending all of today without giving food would simply set us back more (since we already did that yesterday).

During discussion today, the docs also feel like Ella has been doing so well that we are only a few days away from not needing the central line. Because we are only a few days away, they are willing to risk the infection with the central line. In that vein (pun intended), they have laid out a well thought out plan for switching meds to g-tube versus IV, weaning/switching diuretics, getting her to have more formula versus IV fluids, etc. Although the plan is thorough, we’ll need to see what Ella tolerates. It is great to think she will be at full feeds, for example, in three days. But history has shown that Ella can be slow with changes and moving too quickly might cause a problem. Then again, you never know! Ella is always keeping us on our toes.

Another concern: she’s been fluid positive for three days and her weight has gone from 14 kilos to 14.2 kilos to 14.6 kilos the past few days. These are usually her classic clinical signs to indicate fluid retention. So, we’ll want to watch her pulmonary status closely and look for any other clinical signs of fluid retention. For today, we have been safe to stay in the PICU but might be moved to the regular floor in the next 1-2 days, depending on how Ella tolerates all these changes.

She is doing well with feeds. Right now, we are giving a bolus of 80ccs every 4 hours. Her tummy seems to be emptying fine and she is tolerating all of it without much tummy discomfort too. To give you an idea, we need to get to around 230ccs every 4 hours to be on full feeds (6 feeds per day). So, I’m not sure if she will be able to jump from 80 – 230ccs per feed in just a few days, but maybe she will surprise us.

For diuretics, they are taking the Lasix from 20mg per kilo every 6 hours to Lasix 20mg per kilo once every 12 hours, plus Bumex 2x/day (1mg each) via her g-tube, plus Aldactazide via her g-tube. This is the same dose of Bumex that she had at 6 months old when she settled in Gainesville. The goal over the next 2 days: eliminate IV Lasix in an effort to pull the central line. We’ll see how that works.

For withdrawal, they’ve decided to be more aggressive with weaning the Methadone and may wean the amount every other day while leaving Ativan the same. Once the Methadone is out of her system, they will get more aggressive with weaning the Ativan. It seems that we will likely be weaning the Ativan from home for a bit. Also in an effort to switch from IV to oral via the g-tube, they are going to start with Ativan tomorrow (any negative effects will show immediately versus Methadone can take 48 hours to show). Ella has still been having lost of withdrawal symptoms and waking up 2-3 times per night, requiring Atarax and Tylenol in addition to Methadone and Ativan to remain in a comfortable state and not too agitated. I think the picture shows how things get when she doesn’t get between doses of the withdrawal meds.

Ella’s thighs are bruised from having shots of Lovenox, twice per day. Since she is getting more food, they decided to switch her back to Aspirin and Plavix today. No more daily shots! These are her regular home medicines to help her superior vena cava stents from occluding.

Her new incision is healing nicely. The tape that was covering it finally came off on its own. I didn’t realize that they had to cut around her belly button!

Hopefully, all meds will be switched from IV to g-tube by Thursday. Then, we just have to wait for the feeds to increase enough to remove the TPN and lipids (IV nourishment). From there, they will look to remove the central line.

The other bummer about no central line: her labs. Right now, they are giving so much diuretic to keep her dry that they also are having to give up to three K-riders per day (potassium supplement via the IV) to keep her levels good. Without the central line, we will be back to sticking her again for labs which is always a challenge. Sigh…

If everything goes as planned, it looks like we might be at CHOC through the end of the week. But if Ella doesn’t respond favorably to any of the changes described, we may need to look to get a PICC line to keep IV access, minimize infection risk and give her more time to recuperate.

So along with general prayers for Ella’s health, please pray that she will not get an infection via her central line, which is close to her heart. These types of infections can be devastating.

Psalm 112:7 (NLT)
They do not fear bad news;
they confidently trust the Lord to care for them.

Lee Ann on April 27th, 2010 at 6:20 pm #

Praise God for progress! I will also pray for no infections.

Tara Hayes on April 27th, 2010 at 7:01 pm #

you bet i will be praying that she does not get an infection via her central line! thanks for update.

Rainey Family on April 27th, 2010 at 7:42 pm #

Still praying. Glad to hear that she is making some progress. Let us know if you guys need anything.

Terri Trainer on April 27th, 2010 at 8:43 pm #

Hey, Ella can compare her scar to Aunt Terri’s. We both have the funny belly button cut around. It will make for a funny conversation point when she’s older and in a bikini. 😉

Heidi Ham on April 27th, 2010 at 9:42 pm #

Amazing…God truly blessed Ella with the best parents ever…You two are wonderful with the plans and treatment care for Ella ~ the doctors should consider themselves lucky to have parents that make themselves so knowledgeable about their daughters needs! God Bless you all and smooth sailing through the plans that have been laid out. <3

The Brittain Family on April 28th, 2010 at 4:46 am #

Praying for Ella!

Jennifer Tenney on April 28th, 2010 at 5:55 am #

Praying for Ella!!!
Mom to Dakota 12-25-2008
Shands alumnae and Ella follower =)

Christe Mitchell on April 28th, 2010 at 6:32 am #

Awwwww, sweet sweet Ella, prayin for you….

Steve and Joan Odell on April 28th, 2010 at 7:03 am #

So glad you took time for yourselves and rested. It is so important as you know. Bless you darling Ella. Prayers continue for all of you and the caregivers for Ella. Hugs..Steve and Joan

Jennifer Harris on April 28th, 2010 at 8:11 am #

It hurts our hearts to see this baby feeling pain however we will continue to pray for her complete recovery.

Kara Snyder on April 28th, 2010 at 10:32 am #

How cool that she still has a belly button. I have friends that had surgeries as babies and no longer have belly buttons. A silly thing, but it meant a lot to them. Well keep praying for you all. Love ya lots!!!!

Joel snyder on April 29th, 2010 at 12:43 pm #

Ella, I am just happy to hear that you are back to your old tricks of slow steady progress. I will be praying for no infections and more little gains everyday. Love,Grandpa!!!!

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