Posted (Tina) in All Posts on September-17-2008

Yes, I’m excited because maybe sleep at night is coming sooner versus later.

Last night, we tried reducing the volume for Ella significantly. Instead of trying to push 320ccs over 8 hours, we tried 240ccs over 6 hours. Unfortunately, our test was not successful. Ella let us know every 30 to 60 minutes that her belly was hurting and this was not the ticket.

I began to think more and more that it is the density of the food. The Peptamen Jr is 30 calories per ounce whereas the Alimentum is 26 calories per ounce (regular formula is 20 calories per ounce). Because the food is so rich, it has less free fluid. When we use a food pump and push it into Ella’s belly, it takes so much longer for her belly to empty and process the rich food. Yet, we keep pumping it in at a regular rate. This causes lots of discomfort in her belly which is why she complains all night.

So we also noticed that when we feed her quicker during the day and stop to give breaks, her belly seems to do better. Today, I asked about thinning out her formula and told them that I wanted to try bolus feeding. Praise God – – she tolerated bolus feeds today like a champ. We diluted the formula using a 1:1 ratio of Pedalyte and Peptamen Jr. We started with 2 bolus feeds of 50ccs, then went to 80ccs for a few feeds and ended with a 110ccs, just to make up some fluids from last night’s debacle.

Her daily goal is 500ccs during the day and 180 at night. Ideally during the day, 100ccs via bolus with 100% density of formula. So, we are not at the 100% density, but we can work on that at home slowly. I’m just excited because we made HUGE strides today with feeding. It was nice to not feel like I was torturing her.

We’re going to try giving her a bolus feed before we go to bed tonight and one at 5am. Although this is not an ideal schedule for home, we want to see if tonight goes better. Therefore, the excitement at the thought of shut eye!

We had a bad experience this morning with the blood draw. It was with a person that is usually successful with Ella on the first try. Yet it lasted 15 minutes and they tried twice in 2 different locations without success. That is the worst: getting Ella all worked up for so long and not getting what you need. We’re praying that tomorrow morning we are successful.

The docs discontinued the Predisolone (steroid) today. After surgery, she had a 5 day regimen and ever since, they have slowly been weaning it. They opted to increase her Captopril to 1.25mg per kilo and monitor her blood pressures overnight. The max dosage for her age is 2.0mg per kilo, so they still have room to increase it if necessary. When they increase the dosage of Captopril, it lessens the need for a diuretic. So, we will see what the Aldatazide does over the coming days too.

Her heart rate is not only remaining high, but it is all over the place. Sometimes it is higher, sometimes lower. That is not normal for her, so they have ordered an EKG.

Ella is scheduled for an upper GI tomorrow morning at 10am. This will look at her nissen and gastric function since the surgery. I will be interested to see the difference post-surgery.

Tomorrow at 11am, we have a Care Conference. This is where they bring all the doctors and professionals from all the disciplines (pulmonolgy docs, occupational therapy, physical therapy, case management, etc.) to discuss the overall goals for the remainder of the hospital stay as well as the items that can be completed upon discharge at home. We’re hoping it provides a better picture of how much longer we will be here.

Ella not only did well with feeds today, but she was happy and behaved like herself. Physical therapy came by and we had a nice session where Ella sat up with support. She was smiling and behaving like she felt great. It is SO nice to see that coming from her. I feel like it has been a long time.

We sense that God is beginning to answer our prayers about some of the other variables in our life. We’re still waiting and being patient, but things are starting to move in a direction and becoming more evident. As things crystallize, we will share on the blog. All we know is that it has felt like we have prayed and prayed for weeks for His will to be revealed in our lives…and we’re excited to share that things are now coming to fruition. His timing is so perfect. Much better than ours.

As we rest in Him tonight and hope for sleep, our excitement overflows for everything He is doing in our lives, including the amazing medical treatment He has provided for Ella.

Psalm 59:16-17 (Today’s New International Version)
But I will sing of your strength,
in the morning I will sing of your love;
for you are my fortress,
my refuge in times of trouble.

You are my strength, I sing praise to you;
you, God, are my fortress,
my God on whom I can rely.