Saturday, May 18, 2013

Not prepared....

Yesterday (May 17) Sunni had 3 stents placed in her SVC;  a vessel going into the heart.  During the procedure she had to get a blood transfusion due to blood loss which is not that uncommon.  They thought they had gotten them successfully placed as seen by ultrasound of some kind.  After the procedure they were not able to get Sunni off the ventilator.

Supposedly they did not anticipate her having to go back to the PICU afterwards but I believe they had to have known.  They told us before they took her that the procedure was going to take about 4 hours and it did.  They said with her being intubated and sedated that long they did not feel comfortable taking her off.  And then they decided that they were going to have to keep her sedated because they did not want her moving her leg.

The size of the incision on her left leg (that is where they gained access) was too big and if she bent it and moved it around it could cause more bleeding.

Also the night before the procedure her picc line stopped drawing back blood.  Several days before that we noticed that her picc line leg was swollen and turned red when she was upset and the other leg stayed normal.  It also was also hard to get blood at times and not others.  They did an ultrasound to check for clots at that time and were unable to find one.  Right before they took her back for the procedure the picc line had totally come out and was leaking everywhere.  During the procedure yesterday they found a clot in the vessel but were able to place the line back in.  It however can not draw back blood.  Before she ever went I asked probably 6 people to PLEASE not bring her back without a line that draws back.  Go figure!

So the answer to that dilemma was to put an art line in her wrist.  Sunni does not had a good history with art lines....they do not last but a few days. So when that stops pulling back I am not sure what they are going to do.  For the clot at the picc line site they are putting her on a constant heparin drip hoping to get rid of it little by little.

Currently she has a ton of drips going.  I will post a picture to show you.  She is getting SOME formula, TPN, lipids, sedatives, and a paralysis drug to keep her still.  Since she is on a paralytic she has a foley catheter as well.  And that is not even including the 15 other meds she is on.

The only time she was on this many drips was on her first week of life.


She is very, very swollen.  The picture does no justice to actually seeing her.  She is probably at her biggest right now. She is connected to more tubes and wires than I have ever seen her on.  We were told she would be extubated today but her xray did not look good and neither are her numbers or gasses.

So swollen.  Poor Angel


They made it sound like this procedure was going to be a piece of cake for her.  Supposedly they did not even intend on her having to go into the PICU.  We are upset because it seems like she is at her worst and we were definitely not prepared for this.  They are allowing our boys back but only 2 people can be at the bedside at a time.  So we are still not able to be all together.  If we spend time with the boys then Sunni is alone.

I would not be surprised if she is not table to have her surgery next Thursday.  That means even longer in the hospital.  I just thank God that Shawn is here and I am not having to do this alone.  Thank you for your continued prayers....we need them now more than ever.
3rd time in the PICU since April 8


20 comments:

  1. Whitney....
    I am currently preparing to face something huge, and dreading it big time!! But this. This is no comparison, Friend!! Thanks for the perspective, and many, many, many prayers are being sent your way. May God be with Sunni.
    --Take care, and hugs!!--
    --Raelyn

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  2. I read up on SVC when they thought Jayden might have it, but never got the impression it could be this serious...

    Our heart is heavy for all you are going through and we continue to pray the worst is behind her & she will get better from here on out! Keep fighting like a Cherub Sunni!!!

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  3. Whitney, when Sam had his surgery at a year old, the recovery was awful. He swelled up just like your photos of Sunni. I couldn't even post photos; it didn't look like him at all. All of his systems shut down and he was back on TPN, ventilation, and so many of the drugs that I remember him being on during the horrible early days. I remember being so incredibly scared. It wasn't what our doctors predicted either - they were as surprised as we were.

    After about 3-4 days, he suddenly turned the corner. He started peeing and it was so excited that his kidneys were working again. Things went very quickly in the right direction after that. He was extubated on day 8 and we got out of PICU on day 9 to go to floors.

    I know that the situations are different in many ways but I wanted to give you some hope. You must want so badly to just have your family home and well. I am praying.

    Corinne
    Mama to Samuel, lcdh, born Feb1/11

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  4. I remember Eli looking like that after his surgeries. We will be going through that again in a month; not looking forward to it.
    I am so sorry that her recovery is happening this way. Sweet, Sunni. She is still so very beautiful. My heart aches for you and your family. I am praying she turns a corner soon. Please know my family is praying for yours and Sunni's recovery. Lots of love to you!

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  5. 14For this reason I bow my knees before the Father, 15from whom every family in heaven and on earth is named, 16that according to the riches of his glory he may grant you to be STRENGTHENED WITH POWER through his Spirit in your inner being, 17so that Christ may dwell in your hearts through faith—that you, being rooted and grounded in love, 18may have STRENGTH to comprehend with all the saints what is the breadth and length and height and depth, 19and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God.

    Remember that even in the deepest valleys, the Lord goes with her and is with you now. Psalm 23

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  6. Whitney....
    I have "met" twenty--in counting!!--children who were born with CDH online though the wonderful world of Blogging. Twenty!! I feel so connected to these unique children being a survivor of CDH myself, akin even, almost as though they are my babies. I love them, pray for them, and stand on the sidelines encouraging milestones. It would rip me up inside if something should happen to any of these children. "My" kids. That being said, I am just dropping a note your way, checking up on little Sunni, hoping beyond hope that your precious fighter is doing alright. ;)
    --Raelyn

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  7. Whitney....
    Me again. I do hope that Sunni is recovered, alright, and well!! ;)
    --Raelyn

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  8. Whitney....
    Me again. If you are only updating people on Sunni's condition {Let's hope healing and progress!!} via Facebook, do remember those who haven't an account. Like me. I am really, really, really worried about your precious little fighter!! ;)
    For I have "met" twenty--in counting!!--children who were born with CDH online though the wonderful world of Blogging. Twenty!! I feel so connected to these unique children being a survivor of CDH myself, akin even, almost as though they are my babies. I love them, pray for them, and stand on the sidelines encouraging milestones. It would rip me up inside if something should happen to any of these children. "My" kids.... ;)
    --Raelyn


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  9. Whitney....
    Hi. Me again. May I ask you a huge, huge favor? If worse came to worse with Sunni {And I sincerely hope that it did not. She is well and thriving, right??} can you drop a comment on my Blog with the news? {Even if it is good!!} Please? See, I approve all comments, so if worse came to worse, I'll delete it. To respect your privacy. Nobody will read it but me. Thanks.
    Hugs....
    --Raelyn

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  10. Whitney....
    Me again!! I finally decided to at least try and access Sunni's Facebook page!! One quick Google-search later, and I found it!! I am so very pleased that she is thriving!! Happy, happy, happy!! ;-D
    --Raelyn

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  11. Whitney....
    I cannot comment on Sunni's Facebook page, due to not being signed in. Doctors suspect that she has congestive heart failure?! If you are still checking in on my comments, please know that I am praying hard and hoping beyond hope for sweet Sunni!!
    --Hugs--!!
    --Raelyn

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  12. Whitney....
    Me again. I just read your Facebbok update!! I am so glad that Sunni does not have congestive heart failure!! Praise God!! ;-D
    I just wanted you to know that I've got an entire loyal dog Blogging community praying for sweet Sunni.... ;)
    --Raelyn

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  13. Whitney....
    I love your picture of Sunni on Facebook!! Precious!! I am so very happy for you!! Do, please update this Blog, Friend!! ;)
    --Raelyn

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  14. Hi!! I created another Blog today--just for diverse Writing Projects!!--check it out at this address, if you would like!! ;)
    http://writing--projects.blogspot.com/ .
    --Raelyn

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  15. Happy first birthday, Sunni!! As a writer, I express myself with words. However. Words cannot even begin to describe the feelings/emotions which are flowing through my heart and soul!! You made it to one year, Sunni!! You're such a Beautifully Unique survivor!! Welcome to the club. ;)
    --Raelyn
    PS. I do miss Blog updates!!

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  16. Whitney....
    Happy Halloween!! ;-O
    --Raelyn

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  17. There have not been any new updates on Sunni on your Facebook page in a while. She is staying healthy and thriving.... Right? ;)
    --Raelyn

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  18. Whitney, Sunni and family....
    Happy Thanksgiving, Friends!! ;)
    --Raelyn

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  19. Whitney, Sunni and family....
    Just stopping by to wish you a Merry Christmas!! ;)
    --Raelyn

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  20. I just posted a fictional children's story about this character who was born with CDH on my Blog, "Minuscule is good!". { http://writing--projects.blogspot.com/ } Check it out if you would like!! And maybe leave a comment so I know you visited? Raising CDH awareness with something I can do.... Writing!! I hope you enjoy it!! ;)
    --Raelyn

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