Posted (Tina) in All Posts on June-11-2009

Ella’s day was filled with meltdowns.

I’m not sure that I can describe these meltdowns accurately. It simply starts with Ella just being mad about something, which is not new, but when she starts to cry hard and hold her breath, she desaturates so fast. Literally, her face will look blue in a matter of seconds. Ella is not doing anything different or new, but somehow, her little body is responding differently than it has before.

The worse part in all of this, the doctors don’t know why. So far, her sildenafil was increased over the past 2 days (the pulmonary hypertension medicine), but we have not noticed a difference.

Just today, there were 3 instances where she desaturated and turned blue quickly, but between blowing on her face and an increase in oxygen, we were able to avoid passing out. However 2 other times today, she did pass out on me. And the whole thing was fast. One minute she was smiling, the next minute she got mad and started to cry and within seconds was turning blue and passing out.

It is such a scary and helpless feeling as a mother…to be holding your child and praying that nothing worse will come of the episode. It’s fearful because it is happening every day. I just wish we knew what was going on. I think Ella gets scared too because she can’t breathe.

As directed, I’m going to increase her diuretic tomorrow morning and follow that for a few days. Please pray that this medicine will make a difference for her. If not, we will have more invasive procedures ahead of us in the coming days and weeks.

And all of this, just when we thought that the Bun might be on an upward track. Let me clarify: she has always been in forward motion. But it is 10 steps forward and 8 steps back. So, there is incremental progress but it just always feels like she never gets a true break on the medical front.

As always, trusting in Him who knit her together and has a specific plan for her life. But on emotional days like today, pleading for mercy and grace for our sweet baby girl.

1 Kings 8:28 (NLT)
Nevertheless, listen to my prayer and my plea, O Lord my God. Hear the cry and the prayer that your servant is making to you today.

Laura Blackwell on June 11th, 2009 at 10:46 pm #

Watching her pass out must be so scary. Continued prayers.

Kellie on June 11th, 2009 at 11:49 pm #

Oh my. I hate to read about a few steps back. Keep moving forward! I love, love, love the picture of her “tickled” with her hands up by her mouth. What a cutie pie! Praying that you get this figured out b/c I can’t imagine the fear.

megan on June 12th, 2009 at 7:24 am #

Doodlebug I had so much fun with you and mommy yesterday! If only everyone could figure out why you are having trouble with the breathing! Have a great day! Hugs ~

Marge (A Friend in Indiana) on June 12th, 2009 at 7:28 am #

Praying for you always, Ella and for your Mom & Dad; through it all, you always come up with a smile for us. May God Bless You with His grace and goodness and improvement in all health issues. Love you sweet baby!

Melanie on June 12th, 2009 at 7:31 am #

Many prayers going up for sweet little Ella. I’m not sure how I came across your blog but wanted to let you know that you all will be in my thoughts and prayers.

Fran on June 12th, 2009 at 8:08 am #

It must be so hard for you and mommy at these times and none of us can even imagine what it is like. But it is also true that you show us your sweet smile as does your Mom through all. Love you and prayers are with you.

sherry martinez on June 12th, 2009 at 12:39 pm #

I’m sorry it is so hard for you some days. cayden and i will be praying for you all. hugs sherry

Joel Snyder on June 12th, 2009 at 4:12 pm #

Ella, I am sorry that you are having a bad stretch with your meltdowns and I am praying that the medicine will help. Tina I am so sorry that this is happening and I can only imagine how it feels. I am so proud of you for hanging in there. I am saying prayers and hoping things turnaround. I will check on you later. Love,Grandpa!!!!!

Ani on June 12th, 2009 at 5:11 pm #

I’m sorry Ella is having a rough time…this last picture of her is AMAZING….I hope these meldowns will go away very soon. 🙂

Lisa Richmond on June 12th, 2009 at 5:13 pm #

Hi Tina… so weird…the passing out…I can’t imagine…I know the feeling of not being able to catch your breath..but for it to happen so fast that you pass out…she goes zero to 60 in like .1 second..
I hope the doc’s can figure out what’s up…congrats on staying home…it’s a privilege to be able to do that…you’ll be blessed many times over… xxoxo

Laura Marold on June 12th, 2009 at 6:57 pm #

Dear Tina, Josh and Ella,
Just checking in with you all and letting you know I’m keeping up with Ella’s progress. The closeups today were especially beautiful. I wish she could tell us what is going on in her little body.
I’m keeping you all in my prayers every day.
Tina, good for you!! That sounds great.
Love, Laura M.

Jim on June 12th, 2009 at 7:20 pm #

Hi Josh & Tina — thanks for sharing the URL for Ella’s site and life story. It’s obvious that she’s a miracle and huge blessing in your family….we’ll pray that the Lord continues to give you just the amount of encouragement you require each day, to cope with all the challenges that come your way.

in Christ — Jim & Michele (Littleton)

Jenny on June 15th, 2009 at 9:20 pm #

I love that last picture of sweet Ella!

My daughter has a history of febrile seizures and I understand completely the helplessness you feel when an episode is going on. You have no idea how long it is going to last and you are praying the entire time that it ends quickly. My prayers are with you.

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