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Thread: Bekah out of surgery :)

  1. #1

    Bekah out of surgery :)

    Bekah came out of her surgery yesterday and Dick talked to Rich last night. It was a long surgery - a couple of hours - and she will be in Tucson for the rest of the week for recuperation. One major thing accomplished...the sewing up of her stomach incision. The skin around her intestines is so thin because of the various meds she is on they did not want to risk reversing the colostomy and rupturing the intestines again. (I would say the surgeon is once bitten/twice shy...)

    This is from Sharlah's friend Kate who gets either texts or phone calls from Sharlah. Bless her for helping keep the journal! Maureen


    Bekah came out of surgery fine. They were able to close her stomach They replaced her catheter for dialysis also. Unfortunately, there is still too much damage to reverse the colostomy. As she begins to wean from all the meds she is on and her gastro system has time to heal, they may be able to do the reversal next summer. They also decided against the kidney biopsy prior to the surgery. There are many more details, but I have not spoken with Sharlah yet. I will update as soon as I have any more info.
    Thank you for all your prayers!
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  2. #2
    I'm happy to hear everything went well. Her courage and strength is immeasurable. My heart goes out to her.
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  3. #3
    Join Date
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    I don't think I know of any other people, adult or child, who have the stamina and strength of your Bekah. Such an amazing girl.
    I'm so glad the surgery went well. Please send my support and thoughts to the family.

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  4. #4
    I'm glad to hear the surgery went well. That little girl has been through so much.

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  5. #5
    So happy that the surgery went well. Bekah certainly has an amazing spirit. I will pray for her recovery over the next week

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  6. Bekah remains in my prayers. I am glad to learn this surgery is over for Bekah and the family. Everyone connected with this story is remarkably strong and most especially little Bekah. Her heart is huge!

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  7. #7
    So glad the surgery went well. Hope she continues on her road to recovery.

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  8. #8
    Happy to hear Bekah's surgery went well!
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  9. Prayers have been answered! So happy for your family!
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  10. #10
    My heart goes out to that brave, ever-enduring little girl.

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  11. #11
    Oh that poor little baby, how much she has to go through! I am so glad the surgery went well!!!

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  12. #12
    Thank you for all the messages. I have sent them to Sharlah and hope they give her a boost. Here is her update today! Progress, progress...
    I thought I would update. I am here at the RMH to take a quick shower before returning back to the hospital. rich and Michael will be coming out tomorrow eve.

    Bekah is doing well. She has been on oxygen, but at least not the vent! (Was afraid she would have to go back to the PICU after and soooo happy that she didn't!) She got up and walked a tiny bit last night and this morning. It really hurts her belly, and she has to bend over. They had to pull her stomach in 3 inches in width and stitch together muscle and skin about 5 inches in length. Her stomach is closed!!!!! That means that she can now take a bath after 3 months of sponge baths. (Although we still can't get her dialysis catheter wet in the upper part of her chest.) We weren't able to reverse the colostomy. They want to give her another year to heal. I guess her gut and insides are pretty brittle from all the drugs and steroids she has been on. Our surgeon said it was a good thing they didn't do the kidney bi-op because she just touched the liver and it started to bleed, that's how very sensitive her insides are right now.

    Dr. Graham is meeting with the trial drug people today. (oral cidofovir) They are flying into AZ to go over Bekah's records and will be publishing the results in some medical magazine. Bekah will be included because she has done so well on it. Her Adeno virus went from 1.5+million to just 200 as of yesterday's pcr! yeah! That virus has been so hard to get rid of. It activated in November and this is the lowest the PCR has been in a long long time. Thank-you Lord! Adeno can be very harmful if not kept in check. Plus, it also cleared up the CMV virus (also very harmful) that flared up.

    We still are transfusion dependent on red cells, but Dr. Graham says that is because of her kidney failure. Many red cells are are getting destroyed even though she shows she is making a normal range of baby red cells. (The retic count- show red cells before they mature is normal but her hemo drifts down and she needs a red cell transfusion still every week.) She is getting Epogen to try and bring up the red cell count, but it hasn't been enough yet. They had to transfuse platelets just for the surgery, but I am not sure if they will keep the platelets high for healing or let it drift back down to see what it stabilizes at again. It was 33K when we checked in (that's after one month transfusion free of platelets), they transfused to 160K for surgery and today platelets were 60K.

    Thank-you for your prayers! We hope to return home by Sunday or Monday of next week. Lots of love and God Bless~Sharlah
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  13. Thanks for the update, Maureen. What a complicated life for the parents as they deal with medical information and procedures on a daily basis and what a little fighter Bekah continues to be. I wish for her only continued more set backs, just progress, progress, progress....saying prayers again now and will continue to remember Bekah and all her family.

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  14. That sweet girl has had to endure so much and she just amazes me....what fortitude and strength in a child so young. She will continue to be in my thoughts and prayers. Thanks so much for keeping us updated...I think of Bekah often.

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  15. #15
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    So glad the surgery went well. Continued prayers for this amazing little girl and her family!!

  16. Maureen . . . thank you for posting updates here . . . and thank Sharlah for allowing you to share them with us. Bekah is an amazing person . . . I am sure that many people have been touched by her courage . . . and by the courage of her wonderful family. I have Bekah on my prayer list and she is always on my heart too. I am so glad that the surgery went well and that she is healing.

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  17. #17
    Merr...I think what you said really hit me. Dick and I try to keep our lives simple and uncomplicated...and serene...and yet I know with children that isn't easy, at best. But looking, from a distance, at what they have to go through on a daily basis makes me sad. So many unknowns every day ...

    I guess that is why they are living that life and not us. We each get the lessons we need when we need them and I'm sure Dick and I will have some unexpected OMGs ourselves in time.
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  18. #18
    Poor little pumpkin..though I suspect it's a good sign that she's dismayed at the size of her incision! That shows a good level of awareness and feeling, even if the feeling isn't a pleasant one. Maureen

    Just wanted to write a quick note since Sharlah hasn't been able to update...Bekah is doing good. She has still had some problems with her oxygen and suffered a partially collapsed lung yesterday, but she did dialysis yesterday which relieved her of some fluid and that should help. Her recovery from this surgery has been slow, but she is making progress. She is having some pain at the colostomy site, so please pray that it resolves. Sharlah mentioned that Bekah was very sad when she saw her stitches and the length of the incision (which was made larger during the surgery). Please pray for her recovery especially her lungs and fluid relief, pain relief and mental peace after seeing her new outward reminder of what has transpired the last few months. Please also pray for peace with the entire family and strength to aid Bekah in her recovery from the surgery.
    Thanks so much for your continued prayers and support!
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  19. My prayers are with you. May Bekah get stronger and stronger each day!

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