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.