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

Sorry for the delay in updating today. It was a packed day for me and the Bun.

Ella slept well last night and seemed to be stable, so the nurse reduced her oxygen to 750ccs. Once she woke up, I expressed to the nurse that it seemed like she needed more O2 while she was awake. So, the nurse put it back to 1 liter.

We went down to radiology at 10:15am. Too bad I did not have a camera of Ella riding in the Red Wagon down to her procedure. It was pretty cute. She sucked her binky and held onto her frog pillow while watching the ceiling tiles.

They used imaging liquid to check her nissen fundoplication. We wanted to make sure that the wrap was still intact. The good news: everything looked alright.

We are still scheduled for a swallow study this Thursday at 2pm. Unfortunately, I think we still might be in the hospital. So the silver lining is that we can conveniently just wheel on down to have our tests done. The swallow study should answer a lot of our questions that we have been having about Ella’s recent retching with secretions and oral food intake. Also, it should help us come up with a strategy for increasing her calories and a better idea of what we can feed her orally over the coming days.

Once we came back, I fed Ella – – she was tired and very hungry (she had not eaten since 6:30am; we needed an empty tummy to check out her nissen). Once I fed her, she took a nap. When she woke up, she seemed like she was laboring more in her breathing. I kept watching her numbers and behavior. She was still on 1 liter of oxygen, but pretty congested and breathing through her mouth more. The pulse oximeter showed her in the low to mid 90’s, but then dipping down into the low to mid 80’s and not recovering quick. The process of dipping down into the 80s was happening more and more.

I mentioned something to the nurse. She watched, but then Ella would creep up into the 90’s, so she didn’t feel any action was necessary. That was my double-check or second opinion for the time being.

Later around 4pm, Ella began to complain to me a lot. She was clearly having a tough time breathing. She was staying in the 80s more and more. She looked dusky and was breathing labored and fast, with a heart rate around 185. She needed more oxygen and she was letting me know clinically by her complaining too: she was grunting. The flow meter in the room only went to 1 liter. I couldn’t locate the nurse. So I walked to the other side of the bed and grabbed the blow-by oxygen. Ella seemed to respond favorably and crept up into the low 90s. This was my confirmation that she did indeed need more oxygen – it was not my imagination.

At that time, a case manager came in to talk with me. I expressed my concern with her and she indicated that she would go find my nurse for me. Without going into a lot of detail, Ella down spiraled in approximately a 15 minute time frame. She ended up on 2.5 liters of oxygen and required blow-by oxygen to stabilize.

During this episode, they decided to draw labs again and ordered another chest xray. I had not even seen the initial xray, so I asked the doc to take a peek. As soon as I saw it, my gut instinct kicked in and confirmed it: Ella is once again retaining fluid. Her BUN is 14 and she has too much fluid on board; she does so much better when she is more dry.

The biggest change since we came home to Denver is that we were told she could have diluted juice and/or water orally, so she has been having a lot more fluid input over the past weeks. Although it was slow, it might have made the difference. She has always been fluid restricted in the past. This is the only change I can think of related to fluid input.

After going back and forth with the various doctors and sharing her history (this is a teaching hospital too, so you have to explain things over and over to several people), they decided to give her more diuretic. I explained how IV lasik works well for Ella and that it might help get the fluid off her more quickly. Since they did not have an IV yet, they opted to start by giving her an extra dose of Bumex (she gets it 2x per day, so they added another dose). Also, the pulmonologist opted to give her a steroid for the next 5 days to help with lung inflammation called Prednisolone. Hopefully, this will just help her regain strength.

The biggest challenge now: we need peripheral access. They tried to get an IV yesterday with three different people, including a charge nurse. None were successful. Today, they sent someone with a “good stick” that was able to draw labs and did not see anywhere to get in a peripheral IV. So they called the charge nurse in the NICU to come and try. She tried three different places and was not successful.

At this point, they want IV access since Ella’s condition has gotten worse. They do not want to be in a place where they need to administer in a critical situation and not have access.

Our nurse thinks that the only people on shift tonight that might be able to get an IV is the flight team. So we are going to check with the flight team to see if they might be available to try. Honestly, I am not sure how/where they are going to try. She has been pricked several times in various locations. Literally, I don’t know how it will work – – maybe a miracle?

The only other option is a central line, but that is more invasive and Ella doesn’t have a great past with those either. When they did that in the past, her IVC partly occluded.

While I was typing this post, the flight team came into the room. They surveyed and the RN found one spot she thought might work. Josh went outside and prayed fervently. The whole process was about 40 minutes, but they got an IV in her left foot. Praise God – – that was a miracle. Now, Ella is sporting a sexy go-go boot and we are waiting to see if the night crew wants to give her a dose of IV lasix.

Thanks for all the outpouring of support and prayers for the three of us. Please say a special prayer for Josh. He is feeling very stressed, exhausted, and emotionally raw. He is just having a really hard time watching Ella endure this latest challenge.

Yes, this is another valley in the journey, but we know He is ever-present and with us each moment in the hospital, as He is every day. Our prayer request is for a smooth evening for Ella, that the diuretics will begin to do their magic and that her oxygen requirement can be weaned in the next 24 hours.

Psalm 121

1 I lift up my eyes to the hills—
where does my help come from?

2 My help comes from the LORD,
the Maker of heaven and earth.

3 He will not let your foot slip—
he who watches over you will not slumber;

4 indeed, he who watches over Israel
will neither slumber nor sleep.

5 The LORD watches over you—
the LORD is your shade at your right hand;

6 the sun will not harm you by day,
nor the moon by night.

7 The LORD will keep you from all harm—
he will watch over your life;

8 the LORD will watch over your coming and going
both now and forevermore.

Schultz Family on August 5th, 2008 at 10:54 pm #

Praying that the diuretics will work! Try and get some rest! 🙂

Dana on August 5th, 2008 at 11:35 pm #

Praying for the three of you, and an extra one for Josh.

Lesli on August 6th, 2008 at 3:24 am #

Oh, poor sweet West family! We are praying here that the doctors have wisdom and can figure out what is troubling her. And praying for rest and peace for you and Josh.

Love, the Richards

Roxie (Adrienne's friend) on August 6th, 2008 at 4:10 am #

Tina and Josh, I’m back in Arabia now, have been out for most of the summer but checked on Ella when I could. I’ve had Prednisone in the ER for asthma and it really made me very restless and jittery for hours. I breathed better but the side effect made me feel miserable. That is my two cents. I’m praying that that is all there is to Ella’s restless night.
Praying for wisdom you guys and the staff. Also that the staff will trust your ability to know your daughter. I’m also praying for wellness and comfort for Ella Girl.
God’s Peace Be Upon You, Roxie

Linda (Frostproof) on August 6th, 2008 at 4:12 am #

Praying for the three of you and praying that the great Physician will touch that sweet angle and make her feel a lot better. Also pryaing that the doctors will have the discernment to know what to do and to not cause little Ella anymore discomfort. Keep up the faith.

Barbara Mulins on August 6th, 2008 at 4:14 am #

Looks like the Ella fans from Atlanta are checking in, so I thought I’d offer up a prayer: Lord God, King of the Universe, nothing is too difficult for You. With all sweet Ella has been through, this is just another way that You can reveal Your healing mercies and bring glory to Yourself. Lord God, we ask you for your healing touch on Ella and that you would help the doctors and medical staff figure out what is causing her discomfort. We also ask that the professionals would listen to what Josh and Tina tell them about Ella’s history and learn from their wealth of experience. Father, please give Josh and Tina Your peace that passes understanding and guard their hearts and minds in Christ Jesus. Merciful God, we thank You for what You will do in this situation and even now we give You the praise and the glory! AMEN!

I’ll be praying and checking the post and watching to see what GOD WILL DO.



Roxie (Adrienne's friend) on August 6th, 2008 at 4:14 am #

I just remembered that when I had the jitters from Pred. It seemed to help to be held… not stroked but gently held still. You might try that.

the Lizotte family on August 6th, 2008 at 4:24 am #

I’m praying for your little Ella to recover for you. Big hugs

Kristen on August 6th, 2008 at 6:11 am #

Oh my. . . what a long night. I am sure you know best when it comes to evalutaion Ella. Tina you have always been her strong advocate! Go-Go Ella, as you always do onto a stronger day. Praying for rest and peace for each one of you!

Steve and Joan Odell on August 6th, 2008 at 6:15 am #

From experience I know there is nothing harder than to watch your child suffer and not be able to relieve their suffering. Josh, we are praying that his touch will reassure and support both you and Tina. Also for Ella’s healing and insight for the new medical staff you are working with. Lord Bless and hugs, Steve and Joan

Anne on August 6th, 2008 at 7:10 am #

Sounds like Tina’s breaking in a new team of doctors and nurses! When will they learn? “Mother knows best!”… hope you all get some rest. Prayers are with you.

Eusey Family on August 6th, 2008 at 7:11 am #

I hope you are getting some sleep right now. What a LONG night. Josh, you have my extra prayers today, I can only imagine how pained you must be watching your little angel go through this. Tina you are in my prayers too. Now sweet Ella, you look adorable! I want those jammies. : ) you my girl are so strong and I know you will get thorugh this latest battle.

Many hugs and prayers.

The Eusey

Anne on August 6th, 2008 at 7:44 am #

Thoughts and prayers are coming to you from Gainesville.

The Brittain Family on August 6th, 2008 at 7:52 am #

sounds like it’s been tough…thinkin’ of yas.

Kelli Billman on August 6th, 2008 at 8:51 am #

It warms my heart (and hope it does yours as well West family) to see the number of posts and prayers. Even when things were going well, so many kept reading and praying and following this precious child’s adventures. It’s great to see everyone is still out there. It hurts all of our hearts when Ella isn’t feeling well and mom and dad are frightened. May God hold your hand tighter during these times. If there is anything you need, please don’t hesitate (now that you’re in Denver, we feel more “useful”), feed the dogs, check on your house-current or rental, get your mail, you name it. God Bless.

LoriAnn & The Gang on August 6th, 2008 at 12:13 pm #

Wow! All that stuff you have to go through. Glad God is watching over y’all through this whole thing. When Jonny was 2 months, and had RSV, the flight nurses were the ones who came in to put the i.v. in. At the hospital we were in, they alwasy have them come in to insert an i.v. for all babies under one. These gals (and guys) do this stuff in the air on newborns all the time! So, they are good at it. Jonny ended up getting his i.v. on the top of his head; he looked like a little alien. Since he was my fourth kid, I actually ATE while they did it and the was screaming bloody murder. One of the nurses finally turned to me and said, “I take it this isn’t your first kid”. LOL Anyway, I am glad that they seem to be working with YOU and Ella. Sometimes it’s hard to convince the “professionals” of what you think is best. Love you guys. Always in our prayers.
I was actually at the ER with my two year old grandson last night since he split a portion of his forehead open above his eye. Then, I brought my other three grandbabies home while my daughter stayed there. Well, she needed to take to Adavans and was WAY out of it by the time that they were done with Isaiah, so he stayed with me all night. Yup, no sleep for the Gramma. My seven year old (the autistic one) was so worried that he was going to “die”, that he stayed up until 1:AM watching over him: so sweet.
XOXO LoriAnn

Joel Snyder on August 6th, 2008 at 9:35 pm #

Ella, Sorry that this post was late. I had jury duty and I am late getting to check on you. I am so glad that another miracle came your way with the flight team at the hospital. I am coming to see you after jury duty. Love, Grandpa!!!!!!!!!!!!!1

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