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Wednesday, September 8, 2010

Wrenn Update: September 6, 2010

Yesterday morning we were told that Wrenn had a 103 temperature. This was extremely upsetting news because a blood infection could keep her from getting a transplant. They immediately sent off labs and gave her tylenol (another drug added to the mix). She had already been having trouble holding her oxygen levels and was going down hill fast over the last 72 hours. Every little sound or touch angered her to the point of dropping from 85 to 45. This is NOT good and can affect her neurologically.

After watching these terrifying numbers fluctuate for several hours her doctor decided yesterday afternoon that she needed to be put on paralyzing medications. This is the ONLY chance she has to again be stable. An hour and a half later, Wrenn was finally back to oxygenating in the 90's. She is already quite swollen, will have a cathedore soon, is no longer getting breast milk, is still heavily sedated, and is on the highest vent settings possible. We really thought we were going to lose her yesterday but she has fought hard to stay with us.

We saw her latest x-ray, which is completely white. A normal, healthy x-ray should be completely black. There is not one spot on her lungs that works, it is truly a sad sight considering she is just 4.5 months old.

She has earmuffs on her ears to help with any sounds that might scare or annoy her. She holds her doggie in one arm and is resting on her back (for the first time in a LONG time).
We are not sure why she has a fever but a test called CRP was in the sixties, which means there is some inflammation somewhere in her body. Her fever around 1pm today was 102 but went down with tylenol. It has not returned as of yet and I PRAY it stays down. They had started her on antibiotics yesterday morning to nip anything in the butt. The biggest threat to her getting an infection would be from her broviac, which is a line that runs directly into a large vein in her chest.

The doctor has made it very clear to us that we have come full circle in managing her disease. They have literally used every trick in the book and cannot do anything else for her or the disease she has inherited. We desperately need lungs and I have been told they always seem to come just in time.

God, the time is now!

Update 9/8/2010: Wrenn's fever is gone. She had no positive cultures which is good news, but the doctors are being cautious and keeping her on antibiotics, just in case. The radius for a lung search has been increased to 1800 miles. It is now clear that Wrenn is nearing the end and really, really needs that lung soon.


Just_Jennie on September 8, 2010 at 9:47 AM said...

Oh Niki, I am in tears... How heart wrenching for all of you... Know that you all are in my thoughts and prayers! ♥ Love you!

Anonymous said...

Prayers for whatever is supposed to happen to happen... for Wrenn, for your family, for the family making the difficult decisions on the donor side...
Much love & prayers coming your way today...

LisaH said...

Praying hard for baby Wrenn, as always, Nikki.

Now is definitely time for those lungs.


Anonymous said...

Praying for you guys.

Anonymous said...

Oh Sweet Friend! Hang in there. Praying and crying and praying some more. Love you.


Natasha on September 8, 2010 at 1:04 PM said...

Praying xxx

Anonymous said...

My heartwarming prayers are definately with Wrenn and your family, God Bless and He will!

Anonymous said...

You are all in my prayers. Sending you love and strength.

Anonymous said...

Sorry to hear the recent update of Wrenn being on paralyzing medication :( It's the hardeat thing to see your child on this. Garrett, who was also born at Winnie, was put on VEC for 2 months waiting for his Heart. I know you know it saves lives, it's the only thing they can do and I'm so glad they're expanding the radius for the lungs. I'm praying the lungs come any day now....I know for me when we were waiting I would have times when I thought it would never come....God has a plan for Wrenn, she's here 5 months now for a reason and she's showing Everyone she's not going anywhere. I have HOPE for Wrenn, as I did for Garrett,....I never doubted he wouldn't make it and I feel the same about Wrenn. God Bless you...praying I'll log on and read that the lungs have arrived <3
Xo Amanda , Victor & Garrett Xo

Anonymous said...

hi my name is lesly and my daughter haylee is 2yrs old. my daughter was born with aortic stenosis. which is narrowing of the valve at the end of the aorta. my daughter has been a patient at childrens since her birth. her surgeoen is Dr.Huddleston, he preformed her 7 cardiac catheters, her co-arch repair and her valve replacement surgery(which she just had in june). Dr.huddleston in my opinion walks on water! He took my daughters broken heart and fixed it! Your beautiful little wrenn could not be in better hands! The nurses and doctors at childrens are amazing! Your daughter is in our prayers and she seems like a fighter! Children are so resilent! I know how it is to stand by and watch the most precious thing in your life go through something like this and you sit there powerless. Just keep the faith and know that she is in the best hands! She is in my prayers and i wish your family the best. I know we don't know eachother but if you would like to my email is i learned about your daughter through my mother who was working with your husband on some financing. My heart goes out to you and your family and again your daughter is in our prayers and i put her on my churches prayer list.
Lesly&Haylee Steinmetz


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