Posted (Tina) in All Posts on August-10-2008

Today was a relaxing day at home with Ella.

She did really well last night sleeping in her own bed. Our pulse oximeter showed similar saturation and heart rate that mirrored the hospital. This is one of the best ways for us to keep a close watch on Ella’s fluid levels. Last night, she was saturating 100% and her heart rate was between 85-105 when she was in deep sleep. She is still on 1 liter of oxygen. If she does well tomorrow, I think we will look to wean tomorrow night again, once she is asleep.

As I type this, it is raining really hard in the metro Denver area. There is lots of thunder and lightening. I hope it does not wake up the Bun. It is very loud; it has made me cringe a few times. When I ran into her room to shut the windows, her saturation was 100% and her heart rate was 92. This is really good and so different than the week prior.

In the midst of Grandma West visiting and then going to the hospital, I neglected to mention about Ella’s therapy situation. We have been going through the Early Childhood Intervention program for OT and PT. Well, the OT that was assigned came for 2 appointments. By the last appointment, it was evident that it was not a match. I’m sure that she was very qualified, but she rubbed me the wrong way. Personality-wise, she had an abrasive edge to her. So, I asked our case manager if we could find someone else in their network to work with Ella.

Then, last Saturday before we went to the hospital, Ella’s PT called and explained that she had a personal situation arise and needed to cut back her work schedule. So, she dropped us off her schedule. Along with needing to thin out her schedule, I also think that Ella was a lot of work and a great challenge for this therapist. We really liked her, so we’re bummed that we have to find another one.

We started this process when we came back on June 1st. Two months have passed and Ella has not really gotten any great therapy sessions. We have not made any progress forward for Ella for OT or PT. I just feel like we made such great progress in the 4 months post-hospital in Gainesville. Now we are having a tough time getting into a groove for therapy in Denver.

I am planning on getting services through the Early Intervention Program, but have decided to pursue therapy through our health insurance benefits again too for the majority of the sessions. I just feel like the therapists are way better and more experienced. It is strange to me that we ended up with 2 great therapists in Gainesville and now that we are back home in Denver (in a major metro area), we are having trouble making this happen.

Also, I mentioned before that we were trying to get private duty nursing hours. A few weeks back, our health insurance company authorized 20 hours per week for the first 30 days and then re-evaluate. We have been through 7 health care agencies and no one can staff. There is such a shortage in certified nurses through the health care agencies, especially those that work with pediatric patients. So, we have not been able to take advantage of this benefit. Hoping and praying that it will work out, if it is meant to be. It would be nice to have a break here and there.

I made contact with some NICU nurses today and found out that Dr. Kays is on vacation. He is not expected back until August 18th. So, we will need to be patient and wait for his opinion.

Listening to Charles Stanley this afternoon, I am reminded of four truths about God. First, that God is in absolute control. He controls all the circumstances in our life. Second, He will always meet our every need (things that fit into His will and purpose for our lives). Third, God is always with us (nothing will ever be able to separate us from the love of God). Lastly, that He loves us eternally. All of these truths mean that even when the circumstances of life are not the best, we can have confidence.

Please continue to pray for Ella and her health – that she will remain strong. Also, that the best therapists will be placed in our path. And finally, please pray for our upcoming decisions regarding her surgery.

Psalm 68:19
Praise be to the LORD, to God our Savior, who daily bears our burdens.

Lizotte Family on August 11th, 2008 at 4:09 am #

Hey Ella It’s good to hear you are back at home and feeling better. I hope your mom finds a new PT and a nurse to help her. Both of those would be fabulous. Big hugs for you. XOXOXO.

Roxie (Adrienne's friend) on August 11th, 2008 at 5:01 am #

Will continue to lift you all up often and especially now for Ella’s OT and PT needs and a qualified nurse to help you. Also, her upcoming surgery or maybe we should pray for the location of the nissen pump and its proper placement. Wouldn’t it be so cool if God took care of that for you. We can ask…
Love to you, Roxie

Joel Snyder on August 11th, 2008 at 6:12 am #

Ella, I am glad to hear that things are getting somewhat normal for you. I will be praying that your Mom and Dad can find the PT and OT that will work for you. Have a good week and I will catch you later. Love,Grandpa!!!!!!!!

Kelli Billman on August 11th, 2008 at 6:19 am #

Makes me want to go to nursing school…

Steve and Joan Odell on August 11th, 2008 at 6:23 am #

We also pray for the two of you – for rest, peace of mind and support. The three of you are special and we are greatful to have you in our lives. Lord Bless – hugs Steve and Joan

Jennifer Harris on August 11th, 2008 at 7:53 am #

We are praying for your family and know that the GOD we serve is with you two and watching over beautiful Ella. Seek HIS peace and watch HIS power turn this ordeal around so that we’ll know it is HIS grace and mercy. HE works miracles!
~Peace and Blessings

Chambers Family on August 11th, 2008 at 9:05 am #

Glad you are home and settling back in to your routine. Also – it was nice to see a great kids hospital! Glad that is close. Hope the PT/OT works out quickly! And that maybe that Nissen procedure can just be undone. Kids seem to grow out of acid reflux but I can only imagine how much more complicated it is with a CDH baby. She looks so cute!

Jim and Char Jordan on August 11th, 2008 at 9:30 am #

We are praying and sending Lots Of Love. Jim and Char

Aunt Shannon on August 11th, 2008 at 2:49 pm #

Ella looks so happy. We are keeping you guys in our prayers so you get answers for therapy and the surgery.


Kathy on August 11th, 2008 at 4:18 pm #

She looks great today! I love those pics of her playing w/ her feet! Still praying!

Schultz Family on August 11th, 2008 at 10:25 pm #

She looks much more comfortable! My kids just love looking at her and keeping up with her progress.:0)
Praying for patience for you all,

Kara on August 15th, 2008 at 9:35 pm #

I love the stretches she is doing. Kailee says to keep it up. According to her dance teacher you should stretch for an hour every day. She is going to be a natural on the dance team just like her cousin.

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