Posted (Tina) in All Posts on October-6-2008

Ella had a good night – she only woke up twice. Both times were in the early morning, starting at 5am. That is a huge improvement over the past several weeks and closer to her baseline sleeping behavior.

From there, she was smiley all day. We had a great time – reading books, playing, cuddling. You can just tell that she feels really good. This is the Bun that we know and love. I’ve missed seeing her this way. She has felt crummy for so long, even before we ever arrived at the hospital doors.

Today, we decided to complete the cortisol test. This is the test that they attempted at 4am on Saturday morning, but they were not able to complete it because they were not successful at getting an IV. Her BUN was 34 which explains why her veins were not accessible.

We knew her favorite resource nurse was going to be working again tonight. Except this time, instead of waking up at 4am, we decided to do a late night test. Ella began fasting at 3pm and around 9:45pm, we started to try and get an IV again. The nurse tried one area and was unsuccessful, so opted for her right foot. At 10pm, the IV was placed successfully and the medicine was pushed slowly. In exactly 30 minutes and 60 minutes after the medicine is administered, you have to draw labs.

At the 30 minute mark, the nurse tried to draw labs in her arm – it was not successful. So, she asked if they could do a heel prick. For those that have been following for a long time, we are not in favor of heel pricks. Not only do they prolong the torture, but most of the time, the blood clots and they can’t measure the numbers they want to see. Then, you feel like you have tortured for no good reason. But in this case, the nurse had researched a bit and even if the blood did hemolyze a little bit, it would not affect this particular test.

Because the sticks needed to be at exact times, and the nurse was having a hard time sticking her, I conceded to the heel stick. Fortunately, her heel responded nicely. So, we did one heel stick at 10:30pm followed by another at 11pm. In between each stick, Ella would doze off. She would get so tired from screaming so loud. It was a rotten feeling to wake her up each time and let her know that she would be getting stuck…again.

I hope that she passes the cortisol test. The medicine that they administered via the IV sends a signal to the brain to produce cortisol. When they draw the labs, they are measuring the cortisol level to make sure it is within the normal range and that her adrenal glands are responding appropriately. If it is not, it means adding a daily dose of cortisol, just enough to make up what her body is not producing on its own.

The other change for this evening is going up on the food formula. We are going to try 27 k/cal formula. We are hopeful that it will go well, although Ella has never tolerated anything above 26 k/cal. We’re hoping that because this food is already pre-digested, it will work better. Tonight will be telling as far as her toleration. I’m hoping that I will not hear a peep!

Although there are still a few things to iron out, we are hoping for discharge late this week or early next week. In some ways, it would be great if it was next Monday because then Ella would not be in the way of the move on Saturday. I am nervous about trying to juggle her around the house with things in disarray.

Speaking of disarray, there are a handful of volunteers (including one of my dearest friends who will be coming all the way from Texas) who will be showing up to help support us in the move. Boxes, tape, and lots of time invested to help us get packed. The movers show up on Saturday morning and there is still a lot left to do. Praise God for those extra friends that were willing to sacrifice and serve by helping us move.

I can’t stress enough how great it was to see Ella feeling like herself again. It just makes everything worth it to see that smile or have her listen to my heart beat when I snuggle with her.

We praise Him for where He has brought us…for how far He has brought us…for giving us doctors with knowledge and smarts to figure out a regimen that will work for Ella.

Thank you Lord for Ella Renae.

Galatians 6:9 (NIV)
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.