Tuesday, August 20, 2013

Days -4 and -3: Line Problems

Last night, we discovered that Ezra's central line was leaking. It also started bleeding heavily again. The doctors decided to take out the line for fear that it could become infected. Because Sloan uses "temporary" central lines, the line can be removed without surgery. So at 10:30 last night, they removed his line bedside. Thankfully, Ezra still has his mediport (we had fought to keep it in) and they were able to finish his chemo and run the meds through the port. However, Ezra still needs a central line for transplant. So back to surgery on Thursday. It's too hard to explain just how traumatic the experience was for Ezra. Suffice to say it was awful. And now we have to get him through another line surgery. 

Ezra is not feeling well at all. Nausea, vomiting, dry heaves, diarrhea. We are trying to figure out the best schedule for his anti-nausea meds to see if we can help with the discomfort. He is having worse side effects sooner than he did with the first transplant. It is upsetting, but we are trying to keep in mind that so far all signs point to the chemo doing its job, unlike last time.

So far, he has done ok with the latest conditioning drug. He got dizzy at one point today, so they stopped it at that time. His symptoms resolved and they were able to re-start. He is also starting to rage from the steroids that they give him as pre-meds. One more day of this drug. Hard to believe that things will get worse before they get better. Despite how tortuous everything has been for Ezra, he is still a trooper, doing the best he can to keep down his oral meds and to do all that is asked of him.


12 comments:

  1. Oh Robin,
    I am so sorry. Stay strong! Ezra will get through this-all of these are signs that the Chemo is working and he will be cured! Praying that the surgery goes well on Thursday.

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  2. we feel for you and wish there was some way ezra's pain could be eliminated - one medical question - has anyone mentioned the drug emmend - it eliminates the nausea side effect - anny has been taking it with incredible results - worth checking out??
    We are still praying every day that this nightmare/daymare will end with incredibly positive results.

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  3. Hoping and praying for you all that this will work! You are all in my thoughts! Ezra is such a trooper and is a truly wonderful and amazing little boy!

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  4. praying for ezra may hashem bless him with health and a full refuah shelema amen

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  5. Oy, davening with all our hearts. We are pulling for all of you. Hugs.

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  6. Poor baby! Sending lots of love. -hindy

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  7. The worst is almost over. He will bounce back fast after all the chemo. Constantly in our thoughts and prayers.
    Susie Welling

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  8. Sending Prayers to Ezra- The Kravitz's

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  9. sending prayers and love--
    the alperns

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  10. You are in our thoughts and prayers always - stay strong

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  11. Stay strong! Praying for the little man.

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