Thursday, April 29, 2010

Days 2 and 3

Harm still wasn't very stable yesterday. Her nose had started to bleed a few more times along with another bloody diaper, blood from her lungs and more blood from the tube that goes down her nose to her tummy to drain it. Today there is only stomach acid content in her tube (so far), no blood from her lungs and she is FINALLY stable for her condition.

Yesterday they took another ultrasound on her tummy to see if any fluid had accumulated over night from Monday. Little fluid was found, but still more then the day before. The doctors said this could be a good and bad thing. The good thing; it would rule out most of the infections they were starting to think she might have had, since her tummy was swelling with fluid, not her intestines. But the bad thing; this added worry that maybe her rectum was torn and the fluid was blood. This made them a little more interested in testing a few different things since this could also be why her stool is bloody.


She is still on dialysis which the doctors aren't planning on taking her off of for a while. Since she is in multiple organ failure (liver, lungs and kidneys) with her heart bouncing back! A machine is still breathing for her, so to let this machine 'work its magic' she is still heavily sedated to keep her from trying to breath over it, or pulling it out. Her blood pressure is finally stable, getting her out the of the septic shock zone! The doctors are going to look into decreasing her blood pressure meds.


She has been under a heat lamp off and all today and yesterday. The nurse said that with a baby this sick, they don't actually spike a temp until she is getting better. Interesting to know. She has been getting plasma through IV to help her internal bleeding, that they still aren't sure what is causing it. She still has her 3 infections and the doctors still aren't sure what they are. They are thinking about taking her PICC line out of her arm and putting one in her leg, so that the infections in her PICC will be gone.


As of now she has 6 IVs running, still with limited access, rectal medications, 9 IV anti biotic meds, dialysis, on a oscillatory ventilator (breaths for her side to side, instead of in and out), under heat lamps, labs every hour, a tube draining her tummy, a catheter (with a thermometer attached to measure internal temps). Pain killers, and meds to paralyze, and more coming soon.

LOTS and LOTS going on. But she is stable and doing much better. I can't wait to be able to hold my baby again and to see her smile and her big blue... and yellow... eyes! I even missed the yellow in her skin that has finally decided to make and appearance today.


Chelsea came to visit. Her son Jordan just had his Kasai and is doing amazing! I hope he never gets to this point of BA. He is such a cute little boy, and no baby should ever go through what Harm and so many other liver babes have! I also met Lydias parents today. They are staying in the room next to us with Lydia, her mom is so brave and was able to donate part of her liver to Lydia. I am jealous of her. :).


My brother, sister in law, parents and Brandon's parents came to visit today as well! Along with nurses from the infant unit that I can't wait to be able to get back up to... hopefully soon! They came and talked to Harmonee, and I am sure Harmonee was happy to hear their familiar voices! The nurses here at PC are amazing people, only the best!

Today is a better day after having a wonderful movie, good conversation making me feel less insane, sleep, and breakfast. I felt like I was "normal" for a night! Liz, James, and Julia are some amazing people and if you haven't met them, you really should! Or you can always check out Liz's blog with her sweet beautiful baby London (lulu) and her pretty pink new liver. http://liverforlulu.blogspot.com/

PELD score is FIRST PRIORITY! Come on Harm! Kick these infections and lets get you a NEW HEALTHY PINK liver!!

**Sorry... I will try to keep you updated daily from now on so your not reading a novel when seeing Harm's updates. I will have the hubs bring up my phone hook up too so you can see more pics!

5 comments:

  1. I am glad to hear that Harmonee is doing better today and pray that she will continue to improve so that she can get her new and improved healthy pink liver.
    Hugs and Prayers,
    Eden's mom

    P.S. If it as alright with you I would like to put a link to your blog from mine. www.utahlais.blogspot.com

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  2. I hope there is a time in the near future when you may hold and bring comfort to your dear little one. I bawled my eyes out reading this..and I know I will hug my kiddos alittle tighter tonight because of it.Please let me know if there is anything I(or any of us SHC gals)can do! (fundraiser??) God Bless and keep you. You and your family will be in our thoughts and prayers.~ Lea

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  3. I am glad she is better today! I have lots of people praying for her. She such a fighter! Let her know we love her very much. Stay stong!
    Love Autie Barb

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  4. Harm!! Don't make me lecture you again! We have had several talks over the last 2 days, even if you can't respond back i know your listening. This is just a a small set back but everyone knows you are a strong baby! Your mom is a very good mom and so so strong. She always has a smile on her face because you are her sunshine and she knows you will pull through. We are waiting and cant wait for you to join the party back on the INFANT UNIT. Big huge flowers and your beautiful smiles! With lots of love, kisses, angels and prayers!

    Alysha

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  5. Erica that would be great if you did that :)
    Alysha she might need your lectures today ha ha get her out of what ever she is doing!
    Farrah

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