Posted (Tina) in All Posts on October-3-2008

Ella slept well last night. Aside from the interruptions from nurses, she did pretty good.

The nurses came in to continue checking her blood pressure. The diastolic pressure remained low and they were concerned, so they kept coming in to check it. The pressure was still low by the morning. They kept getting different cuffs, trying to get it manually versus the machines – – anything to try and get a better reading. By mid-morning, the docs decided to go back to her dose of captopril to 1mg per kilo, three times per day. This seems to be more of what she can tolerate. Although today, her blood pressure remained low despite the reduction in the medication.

The plan is to let her blood pressures stabilize over the next couple of days. Once they are stable, see what level of oxygen she is using (right now, 1.5 liters down to 1 liter, based on Ella’s comfort). We know that Ella can be stable on less oxygen, so we think she might still be fluid overloaded.

Once her diastolic blood pressure in her heart reduces, then we can discuss if we want to give her a dose of Bumex or IV Lasix. As always, we will be watching all the clinical signs to make sure that she responds favorably (behavior, retching, drinking orally, heart rate, breaths per minute, overall comfort).

We talked with Dr. Fagan about the SVC procedure. We think it might be something we want to try at some point, but we would like to try and treat her condition with medicines for now.

Ella is tolerating the new feeds really well. At 4:30pm, they increased the caloric density and we are up to 26k/cal. This is great news…because they warned if they did not get her to take food, we would need an NJ tube. I’m so thankful about not needing the NJ tube – – Praise God!

Josh volunteered to sleep at the hospital with Ella tonight, so I could have some uninterrupted sleep. So I am going to end this quickly, so I can get my rest in. 😉

Kelly the Nanny on October 3rd, 2008 at 11:06 pm #

Definitely an interesting day on the Ella front.

Numbers 6:24-26 (my reading tonight)
“The Lord bless you and keep you; the Lord make his face shine upon you and be gracious to you; the Lord turn his face toward you and give you peace.”

It’s amazing how God holds out to us–his children–a peaceful and worry-free lifestyle that we can enter into on a moment-by-moment basis. It’s so hard not to worry–trust me, i know–but each day the Lord offers us is another blessing, and we hand it right back to Him. And when we hand it over, so our worries and cares go with it.

See you tomorrow! 🙂

Joan and Steve Odell on October 4th, 2008 at 7:14 am #

It seems like Ella is getting a little break from heavy trauma – this is a blessing so her little body can settle down and go forward. You are all in our thoughts and prayers. Welcome Kelly to all of our family as well. You are indeed being guided by His hand. Lord Bless and hugs to all – Steve and Joan

Tammy on October 4th, 2008 at 10:39 am #

Hooray…..Ella you have a little bit of “bed head” which in my bed world means you’ve been able to sleep!!!!! Hope mom and dad have been able to get some much needed rest too.

Blessings to you all,

Kathy on October 4th, 2008 at 12:49 pm #

I saw this Scripture today and thought of Ella.

Praise the LORD, you his angels, you mighty ones who do his bidding, who obey his word. Psalm 103:20

Joel Snyder on October 4th, 2008 at 2:45 pm #

Ella, I am hopeful that the mecicines and the adjustments are starting to work for you. You slept most of my vistit and that is good. I will be in tomorrow to visit and have lunch with you and Dad. See you then. Love,Grandpa!!!!!!!!!!!!!

Eve Johnson on October 4th, 2008 at 6:22 pm #

Continuing to pray for you all. She’s just so darn cute!

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