Posted (Tina) in All Posts on January-22-2009

We got in the car about 1pm today and Ella was excited for the change of scenery. She was in a great mood!

Once we arrived at the Children’s Hospital, we went to the outpatient blood lab. That is my least favorite part of the entire field trip. They were able to draw her blood successfully from her inner arm. She cried hard but the pain was over in a matter of moments.

When we walked out of the blood lab, I stayed nearby to wait for Josh. He met me at the Children’s Hospital, so we could go to the doctor appointment together and discuss our current options. Once he came around the corner, Ella smiled so big. She recognized her Daddy…it was cute.

We went upstairs to pulmonology to wait for our appointment. We visited with Megan who works at the check-in counter. She is always so sweet. We love seeing a familiar face when we go for our pulmonology appointments. Megan noted how happy Ella seemed today. We were all having a great time with her.

Once routed to the exam room, she weighed 8.9 kilos. She weighed 9 kilos on the scale from the home nurse the other day. So that was good weight gain. Some of it might be fluid, but clinically, she is on 1 liter of oxygen and seems to be in a good mood.

Several things came out of our appointment today:

1- Increase in her diuretic (aldactazide) to 2ml or 10mg, twice per day. This was basically adjusted for her increased weight (maybe this is why she required Bumex sooner than 2 weeks).
2-Start potassium-chloride supplement, 3ml once per day
3-Follow-up with labs next week to assess how the additional diuretic and potassium-chloride supplement is working.
4-Prescription for Kenalog to help minimize and control granulation tissue around her g-tube.
5-Call to schedule a follow-up ultrasound renal exam to assess her kidneys and whether the nephrocalcinosis has improved or worsened.
6-Call to schedule a follow-up upper GI series to assess her increased retching.
7-Discussion of the SVC procedure (more details below)
8- Another follow-up visit in 7 weeks.

The other day, I called and left a message with Dr. Fagan (cardiologist) to ask about the next steps for getting Ella into the heart catheter lab. Based on my phone call, Dr. Abman was contacted. This gave them a few days to discuss before our appointment.

So when I brought up the subject with Dr. Lysinger today, he welcomed the conversation as it was already a discussion point for him and Dr. Abman. My curiosity was peaked. We asked the Lord for clear guidance on the next best steps, so what were they going to recommend?

Fairly quickly, he summarized their position: they think we should go ahead with the procedure and try it. There is no guarantee that it will fix her fluid issues and there is risk with any procedure, but from a long-term perspective, Dr. Fagan thinks the risks are minimal and it is not a bad thing for Ella to have her SVC open. Dr. Lysinger noted that he would get together with Dr. Abman and Dr. Fagan and begin to coordinate the procedure. We expect to hear from him in the coming days although we are not sure of the timing or strategy for the operation (admit her to the hospital beforehand or only after the procedure, etc.).

We’d like everyone to help us pray for a miracle for Ella. The liklihood of Dr. Fagan being able to open her SVC is not high since it is so occluded (about 2.5 inches on her chest xray). He is the one that told us this fact, but he is still willing to try.

So we’re praying for a miracle: a successful procedure and that will open up doors for Ella. She has suffered with this fluid issue for a long time and we would really like to see this area improve for her. We’re hoping that this might be a big relief for her little body. Please join us in prayer over the coming days.

Luke 11:10 (NLT)
For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened.

Terri Trainer on January 22nd, 2009 at 11:19 pm #

Great update and LOVE your hair cut! Prayers are heading your way.
Love you guys!

Amber Riley on January 22nd, 2009 at 11:42 pm #

She is adorable! Praying for your family.

Kathy in West Texas on January 23rd, 2009 at 5:09 am #

I am praying for you all and for the doctors that God would guide them and help them know what they need to do.

Marge (Indiana friend) on January 23rd, 2009 at 7:15 am #

Praying for all of you and God’s guidance with wisdom for all of Ella’s doctors and caregivers. Ella’s beautiful face relects God’s love and light and if we keep focused on that, we will always be ble to see Him through her. Love & God’s Blessings to you all.

megan on January 23rd, 2009 at 8:17 am #

Doodlebug I loved seeing you yesterday with mommy and daddy! You were super cute with your dancing moves! Seeing you all made my whole day! I will pray for clarity with everything and hope that calmer seas are in the future! Hugs~

Joel Snyder on January 23rd, 2009 at 9:23 am #

Ella, What great news that you had a good appointment with the doctors. I sure was glad to see you and Mom and Dad in the pictures all three of you look great. I am praying that your SVC prodedure will be scheduled soon and that it will be successful. I am coming to see you guys in the morning and visit. Catch you later. Love,Grandpa!!!!!!!

Debbie Bennett on January 23rd, 2009 at 9:32 am #

Sending prayers your way. If it is meant to happen, the Lord will prepare the way.


Nayeli's mommy on January 23rd, 2009 at 5:58 pm #

Ella your smile is so sweet. We are praying for you.
Liz and Shane Nelson

loren lizotte on January 24th, 2009 at 10:14 pm #

Hello Folks warm greetings to you from Tampa! I’m catching up on the older posts. I’ll pray for the procedure to be a complete miracle.
Big hugs.

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