Posted (jooosh) in All Posts on August-7-2008

Yeah…that’s what I said…surgery. You can see by the look on Ella’s face she’s not too excited either.

I’ll get to that in a minute, but first let me bring ya’ll up to speed. Although I had a work project and couldn’t get to the hospital ’till midnight, I gave Tina a break so she could go home to sleep while I spent the night with Ella.

Once again the prednisolone kept Ella up pretty much all night. She was restless and woke up about every 15 minutes. She finally went to sleep around 5:00am but only for about 45 minutes or so.

Her oxygen was also weaned down to 1 liter last night, and she seamed to be tolerating it ok. She took a long 3 hour nap in the late morning and during that time her heart rate and saturations looked great. Her heart rate hovered around 105 bpm and even dipped as low as 89!

Later in the afternoon Ella started having some problems breathing. Her breaths became more labored and she started getting upset. I let the nurse know what was going on and we began to increase her O2, both in her cannulas and with blow by. Ella had a real hard time recovering but she finally did. We think we figured the cause of this one though. We believe that Ella’s O2 is being weaned too fast.

When she was on a liter of O2, her saturations hovered in the mid 90’s but would dip into the low 90’s as well. When this would happen her body would try and compensate by working harder to maintain the higher saturation. By the afternoon, she was just worn out which caused her to spiral down. We know Ella likes to take her time with things, so moving forward we will be weaning her slooowly so we don’t encounter this again.

Also, Ella had her swallow study done. It wasn’t real bad, but it wasn’t perfect either. The good news is that she is not aspirating immediately when she swallows, but her timing is off enough to where the food is being stopped by her vocal cords and muscles in her throat instead of the epiglottis. We’ll find out in the coming days the recommended approach for giving her food and drink orally.

Ella had an EKG done this evening just as a precautionary measure because her heart rate monitor kept throwing these weird alerts. The doc didn’t think she was actually experiencing them, but just to be on the safe side, she wanted a test done.

The big news of the day though relates to the upper GI study they did the other day. If you remember, the technician told Tina that everything looked ok. But after the radiologist studied the images in detail, it looks as though Ella’s nissen has pushed past her diaphragm and is up in her chest area. This is the most likely cause for her increased retching when she drinks or starts to cough because it’s pressing against her esophagus.

Repairing this will require surgery…something we’re really not excited about to say the least. We still have not talked about all the details with the surgery team, and we’re also waiting to get a consult from Dr. Kays before we do anything. The earliest the surgery would even take place would be the middle of next week, but we’ll just have to see. I just know that with all of Ella’s history, no surgery is going to be very straightforward.

Even with all this, Ella is taking it in stride. She’s seems to be feeling better tonight, even acting more like herself.

Please pray for our girl in the coming days and for wisdom so that path is made clear for the doctors and in our decisions.

Praise God for this sweet little Bun.

LoriAnn & The Gang on August 7th, 2008 at 9:12 pm #

What a beautiful baby. I pray that His wisdom leads you. I hope that these doctors know what they are doing with His precious gift. I pray that y’all get some sleep tonight and that the Lord puts His loving arms around your family. I also pray that you all can get some sleep and feel rested and sure in the morning.
Love to you. LoriAnn

Anne on August 7th, 2008 at 9:15 pm #

Thanks for the update, Josh… we out here in cyberspace were wondering! Ella looks happy and very healthy… isn’t it wonderful that she’s a baby and doesn’t know about things like “surgery”, “aspiration”, diaphragms, etc… she has no worries! (Her parents do it all for her!)… Sounds like she’s in good hands, and a consult with Dr. Kays is wonderful! We’ll all be praying for a successful surgery and once she recovers she’ll be your happy little girl again! -Anne

Fran on August 7th, 2008 at 9:17 pm #

Ella does look like she is feeling better. Her sweet smile is shining through again. Mom and Dad, try and get some rest. Prayers. Fran

Jim and Char Jordan on August 7th, 2008 at 9:26 pm #

We shall pray often. Rob and Kara are going to be at Aunt Ginny’s this weekend and we are traveling up to Orange County to see them. We shall pool our prayer resources and lift you all up we hope. Hang in there. She is amazing. She looks great for all the growth and internal complications. Our love Always, Aunt Char and Jim

Naz on August 7th, 2008 at 9:37 pm #

Ella is a fighter! I am sending you all lots of love. Naz

Laura Arneson (Adrienne' friend) on August 7th, 2008 at 10:04 pm #

Blessings and prayers for your sweet girl and for you both. We’ll keep you covered through the night while we’re awake over here on the other side of the planet. Our God is the Awesome God!

angie on August 7th, 2008 at 10:36 pm #


Michelle Herman on August 7th, 2008 at 10:38 pm #

I’ve been reading your last few days… and can’t believe she is in the hospital again! I know this must be so difficult for all of you! She does look pretty calm and serene…considering… like she knows it will all be ok…. she is so much stronger now that she was even a few months before… the bonds that she has formed with you both, are going to help her get through this… hope you all get some much needed rest….

Joel Snyder on August 7th, 2008 at 11:37 pm #

Ella, I am home with your pals Taco and Manny and took a long nap this afternoon after visiting you today. I am glad to hear that you are feeling better. Josh and Tina you both are unbelievable and I am praying for you to get the correct information and consults for Ella. I am hoping that all three of you can get some rest. I will be back to see you guys tommorow. Love,Grandpa!!!!!!!!!!!!

Kathy on August 8th, 2008 at 4:28 am #

Oh goodness, I am so sorry to hear she is going to have to endure another surgery. But, she is being covered in prayer, and I know God will bring her through this. I will be praying for her, ya’ll, and the doctors and nurses that they might be guided by God’s hand.

Roxie (Adrienne's friend) on August 8th, 2008 at 5:05 am #

She is Precious In His Sight!!! We are praying for you all. Love to you, Roxie

Steve and Joan Odell on August 8th, 2008 at 6:20 am #

We pray for the three of you, Dr. Kays and the medical team at Children’s – He will hold you in his hands and guide the physicians. Lord Bless – Steve and Joan

John & Estela Williams on August 8th, 2008 at 6:39 am #

Keeping you 3 in prayer, the Dr.’s and the nurses. Hope you have a more restful day Ella. Love you guys!

Tammy on August 8th, 2008 at 7:50 am #

I’ve been following a long here in So. Cal…….am so sorry your back in the hospital. My prayers and thoughts are with you all.
Just a little bit on the good old drug Prednisone….it will make a little guy (which was my case at 40mg a day with a two year old) or the Ella B., really irritable, and just a wee bit loopeeeee.
Take good care.

Ani on August 8th, 2008 at 8:40 am #

The picture of Ella with all the cords attached breaks my heart…but she is a tough cookie…I know it! Love you!

Laura Marold on August 8th, 2008 at 8:44 am #

Dear Tina and Josh, Sending prayers your way for strength. Hopefully, this will bring an improvement in her health in many ways. Love, Laura M.

Laura Romero on August 8th, 2008 at 10:01 am #

Although yet another surgery cannot be fun and all the tubes are scary, you can’t deny the charm and beauty in Ella! I love the pictures of her smiling, gripping her blankie. You are all in my thoughts and prayers.

sherry martinez on August 8th, 2008 at 10:03 am #

sorry to hear that about ella we will pray for you guys. your strength and courage has been amazing. im sure after this things will be back on track for you. hugs from baby cayden here in ca. he feels ellas pain as he had six surgeies in his first seven weeks of life. god bless

Lisa T on August 8th, 2008 at 10:20 am #

I am bummed to hear that you might have to get another operation, Ella, but you are super strong and I’m confident that you will use your superbaby powers to conquer this hurdle just as you have all the other ones!! Keep your chin up and tail curled!

The Riches on August 8th, 2008 at 11:13 am #

We have been thinking about you guys all day. We’re praying that God provides you with some clear direction as to what the best course of action will be for little Ella. We love you guys!

Rusty, Liz, and Par

Jennifer Harris on August 8th, 2008 at 2:01 pm #

My thoughts have been on Ella last night and all day. Please know that my family is praying for this precious baby and we’re asking GOD for his mercy and grace and claiming victory over this trial! Please let me know if there is anything (anything) we can do to assist you!

Chambers Family on August 8th, 2008 at 2:18 pm #

What is the purpose of the Nissen to begin with? Can they undo it permanently? Was it because the reflux was so bad?

I sure hate that you have to go through all of this! We are thinking about you always!

Elizabeth Norman on August 8th, 2008 at 6:29 pm #

We hold up you and your precious Ella in prayer.
May our Lord just wrap his arms around all of you and comfort you.
Elizabeth Norman

Cathie Firestone on August 8th, 2008 at 8:03 pm #

We are praying…It is so hard to go back to a hospital once you’ve had your precious baby home with you…thanks for continuing to keep all of us posted.

Schultz Family on August 11th, 2008 at 10:13 pm #

Oh, I pray for wisdom for the doctors about the surgery and peace for you both as you prepare for this again! She has come so far and has touched so many lives! Thanks for keeping us involved..:0)

Post a comment

Name:  (required)
Email:  (required)