Oct
13
    
Posted (Tina) in All Posts on October-13-2008


Last night was rough for Ella. She was restless and up several times due to food discomfort. They changed the nightly food rate to 34ml/hour. Although it was only a 2ml increase per hour, it was too much for Ella.

The morning started out with labs. It is almost hard to believe, but her BUN came back at 37! That is the wrong direction and the most dry she has ever been. This portion of her labs caused a lot of discussion this morning as to whether or not she should be discharged. The expectation was that she would have gotten more wet with the increase in the volume of food over the past few days. Instead, she became even more dry. It made the docs question whether or not the “cocktail” was correct.

To be honest, I think they realize that the “cocktail” is not correct. Everyone agrees that a BUN of 37 is too high (normal range is 6-17). But although her numbers show that she is too dry, they all agree that she looks and behaves great. She is definitely more comfortable when she is running dry. It just becomes a question of whether or not she is too dry.

I feel like this process of refining her “cocktail” is a long term plan for management. Even if it was perfect this week, it does not ensure that it will be right in a week from now. We will always be adjusting her meds and food as each week passes. This process is long term.

As a compromise, we went to the pulmonary clinic and used their scale in B1 to weigh Ella. As we approached the pulmonary clinic, Ella saw her friend Megan (she works at the hospital and helped us move last week). Megan took us right back and gave us VIP treatment. Ella weighed in at 7.9 kilos.

Next Monday, we have to go to the Children’s Hospital to get labs done again. Along with that, we were asked to visit the pulmonary clinic scale again to see if Ella is showing any signs of weight gain. By agreeing to these 2 steps, they decided to let us come home with Ella this afternoon 🙂

Even on the way down to the pulmonary clinic for the weight, Ella got a huge smile on her face. She was simply excited to be out of her hospital room.

On the way home from the hospital, we had a scare. The staff did not let us know that 3 of Ella’s medicines are compounds (these are new meds for us) . Compound medicines can only be made at certain pharmacies and typically take more time. When we tried to work with 3 different Walgreens, we kept running into challenges. For example, they will not even fax prescriptions from one Walgreens store to another Walgreens store. Finally, we worked it out with a local, family-owned pharmacy at the last minute. They were nice enough to take a verbal order and asked that we fax it. Since I was in my car and did not easily have access to a fax machine, Josh suggested that I take photos of the prescription and email them. It totally worked.

My beautiful wife has fallen asleep while writing this post. I’ll try and pick it up from here.

The pharmacy was able to get all three compounds mixed and ready within an hour and a half! Their service was absolutely phenomenal.

With this problem solved, Tina was able to come home and get a temporary place set up for Ella. The house is still in disarray, and the Bun’s room still smells of paint, so we’ve set her up in the living room for now.

There remains a ton of unpacking and organizing to do before we’ll truly feel moved in, but it’s nice to be home with our sweet girl.

Praise God for the work He does in our lives every day. Ella Renae is quite the miracle, and her spirit and strength remind us of just how awesome our Lord is.

Thank you Jesus for allowing us to take our girl home again. We pray that you continue to heal her body, and ask that you give us wisdom and discernment in balancing out her medications. You Lord are worthy of our trust. We surrender our beautiful girl back to you so that you may be glorified. We love you Father. Amen.




The Dirirm Family on October 14th, 2008 at 3:15 am #

Yeah!!! So glad that Ella is home! Praying for a restful time at home amidst all the boxes.
The Dirrims

Kathy on October 14th, 2008 at 4:13 am #

YEA!!! PRAISE GOD she is FINALLY home!!! I hope things continue to go well!

Jennifer on October 14th, 2008 at 5:09 am #

super yay!!! So excited for y’all!!

Jennifer Harris on October 14th, 2008 at 7:43 am #

Wonderful! GOD is good all the time and all the time GOD is good 🙂

Peace & Blessings

Jill E G on October 14th, 2008 at 8:04 am #

I’m so happy you guys are home! Prayers that Ella continues to do well.

Jim and Char Jordan on October 14th, 2008 at 8:06 am #

We are relieved and grateful for your return home. LOL yes, Josh, Laugh out Loud!

Sherl H on October 14th, 2008 at 8:09 am #

Thank-you God for bringing Ella home. Continue to watch over her.

Joel Snyder on October 14th, 2008 at 8:30 am #

Ella, It was a great day for Grandpa to come to the hospital and have lunch with your Mom. But the best part was being able to help her get you out of the hospital. I am praying that things will go smooth for you at home. I will check on you later. Love,Grandpa!!!!!!!!!!!!!!

Grandma on October 14th, 2008 at 8:30 am #

Yesssssssss! So happy to see you are home in the big house Lots of kissess to the Bun .Hugs to you both and Thanks to all who were there to help
And last but not least thanks to Super Nanny Kelly

Kelli Billman on October 14th, 2008 at 8:38 am #

Fantastic! Love seeing Ella in her new home with Nanny Kelly! Tina, please get some rest. I’m here to help you unpack whenever you need!

"Super Nanny" Kelly on October 14th, 2008 at 11:04 am #

Having Ella come home yesterday was pretty much the best thing ever. She was definitely unsure of what was going on, but cuddling up with her and comforting her AT HOME was the best! even though shes not feeling great, its much better to be taking care of her in the chaotic comforts of the developing home 🙂

Joan and Steve Odell on October 14th, 2008 at 11:07 am #

AMEN! Home at last – prayers continue for all ELla’s needs and your needs be met. Wonderful that Nanny Kelly is there to assist with all things – Hugs – Steve and Joan

Kara on October 14th, 2008 at 11:12 am #

Welcome Home!

Katy Nilsson on October 14th, 2008 at 12:54 pm #

Home Sweet Home! So glad you were to bring Ella home and be together in your old ‘new’ house.

LoriAnn on October 14th, 2008 at 4:25 pm #

How exciting! To be home, at last! I am so happy that y’all had so much help. Thank the Lord. It has to feel great to be home. Ella, I am sure, is happy to be away from all those midnight checks, pokes and different people. Glad Kelly gets to experience “home” too. We are all so happy for you and your family. Tina and Josh, I hope that you find comfort every time you leave Ella in Kelly’s caring arms. Kelly, I hope you find strength in those days when you are “alone”.
Love to y’all LoriAnn and the gang (one two kids sick now! yay)

Debbie Bennett on October 14th, 2008 at 5:15 pm #

Praise God from whom ALL blessings flow. Welcome Home little girl. We love you and are very glad you are home.

Amber on October 14th, 2008 at 7:47 pm #

This is the best news I have heard all day! Welcome home Ella

megan on October 14th, 2008 at 8:19 pm #

Hey Doodlebug, I was so happy to see you and mommy yesterday. I hope that you enjoy being home with everyone. Can’t wait to see you next week!

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