Posted (Tina) in All Posts on March-4-2009

Ella was up several times last night, mostly between midnight and 4:30am, for a total of about 10 times by 8am. We’re not sure if it is teething pain. Out of nowhere, she will just start crying and crying hard. This causes her to desaturate and for her pulse oximeter alarm to begin beeping. After some holding and consoling, she calms down. Other times, she starts whining and breathing hard. I usually run into her room before the alarm begins beeping, and sometimes she is thirsty and wants a drink, yet other times refuses the bottle and requires her binky and frog to go back to sleep. Another theory would be nightmares, since the cuddling and consoling seems to work within a minute or two. And finally, we’ve never ruled out that her heart medicine, Captopril, is partly to blame since insomnia can be a side effect.

Even though the sleeping patterns have not improved, Ella looks better. Each day, we’re surprised how good she is looking. You can just tell in her color. And her behavior has always been telling of how she feels…and she has been in the best mood. In the past, we’ve had days at a time that we would term as “honeymoon periods”. Right now, we’re hesitant to believe that this is her new baseline, but that would be amazing if this was not a honeymoon!

Her OT and PT sessions went well again today. Not as much melting down, more tolerance of the exercises and better able to compose herself when she did get upset. Again, all signs that she is feeling better.

We’re so glad for Kelly too. As you might imagine, Ella is a lot of work…and she is so much more fun to take care of when she is feeling better!

Ella’s weight has stayed the same this week. We’ve only had minor fluctuations between 9.2 and 9.29 kilos for the week (20.28 pounds to 20.48). We’re still waiting to hear from her pulmonologist to hear if he has any thoughts on next steps. Since she cannot handle an increase in the food density, we’d like to simply increase her fluid. With the recent SVC procedure, our thought is that she may not be quite as fluid sensitive. Another option would be to change her diuretic dose, but we’d like to see if we can keep her current Aldactazide dose the same and not have to give Bumex every two weeks. That would be a big step to not ever have to use Bumex. She’s been using it in one form or another for 1 year and 2 months. Moreover, she’s required using some type of loop diuretic since she was born (before Bumex, it was IV Lasix in the NICU). The long term effect on her kidneys is not the best.

We’ll be watching her saturation levels when she sleeps over the next few nights. Last night, her saturation was not quite as strong as the previous nights. Either way, her oxygen requirements are still way less. This is when we wish that our home was not at an elevation of nearly 6,300 feet. We’re curious to know what her lungs might be capable of at sea level. Someday, we will get to travel with Ella to sea level. It will be interesting to see if there is a difference for her.

As I end the post and prepare for Ella night duty, we’re just so thankful for last week and the successful procedure. We’re still in a bit if awe and disbelief that Ella’s SVC is open…that Dr. Fagan was able to get it open and place two stents…all just one week ago today.

Deuteronomy 10:21 (NIV)
He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.

Julie on March 4th, 2009 at 11:39 pm #

Since our girls are both up at all hours of the night this week, maybe we should just have a slumber party and let them party ’til dawn together.

We, of course, shall sleep in the other room.

Kathy in West Texas on March 5th, 2009 at 5:12 am #

She DOES look better! Her face is fuller, but not like it was before. She has cute little cheeks, too! Praise God for her increasingly better health!

Katy Swiergosz on March 5th, 2009 at 6:58 am #

It’s so good to see her happy and smiling. Thank you for always sharing the cutest pictures of her.

Anne (CA) on March 5th, 2009 at 8:17 am #

Kathy is RIGHT… she looks healthier and happier…!… let’s hear it for an open SVC!!!

megan on March 5th, 2009 at 8:25 am #

Hi Doodlebug you look beautiful in your pics! I am glad to see that you are better. Josh,Tina, and Kelly I hope you have a wonderful weekend and bless you all for taking care of doodlebug..

Joel Snyder on March 5th, 2009 at 11:05 am #

Ella, I just got home from work and the cleaning people are here. I am in the backyard with Manny and Maggie what a beautiful day. I went to the Avs game with your Dad last night we had a nice dinner and the game was fun even though the Avs lost. I have to tell you that I believe you are looking so great these days and I concur with your Mom’s title for this blog. If you look this good in only a week I am hoping and praying for bigger and better progress with time. Have a wonderful weekend and give Mom,Dad,and Kelly a big hug from me. Love,Grandpa!!!!!!!!!!!!!!

kristin thompson on March 5th, 2009 at 11:23 am #

Ella, you look fantastic! Keep on smiling and showing those pretty teeth! Keep on healing! xxxoooooo

Eve Johnson on March 5th, 2009 at 11:35 am #

Gee, Florida’s at sea level…hmmmm…..(hint, hint)

Jim and Char Jordan on March 5th, 2009 at 2:17 pm #

Yes, the improvement is really evident in her demeanor and sure enough her pictures. We will pray for a positive permanent change for her. She really deserves it.

Kara on March 5th, 2009 at 2:28 pm #

I love all her toofers. She’s about ready for a burger with all those teeth. 🙂

Williamsburg on March 5th, 2009 at 4:55 pm #

It’s true – it’s amazing what a difference we can see in her just from the pics (of course pink gingham doesn’t hurt either.) Hmmm – wondering what pics of Mom and Dad would look like these days…
We continue to pray for the beneficial effects of the procedure to extend to good sleep for the whole household. Meantime, we’re thrilled at the forward progress and grateful to God for his unending love and care for you. XOXOXO

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