Courage for Kennedy – Journal


December 22, 2005

Category: Treatment – Melenie – 2:00 am

Kennedy is in the pediatric ICU
Ok, so I haven’t gotten better at updating but that is my New Year’s Resolution! I just knew I had to post now as Kennedy is in critical condition. Two weeks of Ara-C finally did it and last Thursday she needed a platelet transfusion (her platelets were 7 and normal is 140-440). Normally not a big deal and expected with Ara-C but not the high light of our day. Friday she needed redcells so we spent a very long day in Day Treatment but again, it was expected. Kennedy’s ANC was at 1470 on Thursday and she was rather chipper, so we went to the family Christmas party at Caryn’s for some yuletide cheer. That is when we first became aware that there was a problem. Kennedy was running a fever (again, another common side effect of Ara-C) but it was 102 and she had a bloody nose that just wouldn’t stop. We called Dr. Norwood and he sent us to the ER not thinking we would actually have to stay. However, her ANC was now 670 and her platelets were less than 5. We didn’t know how much exactly because when they are so low (below 5) they can’t even see them without a very high power microscope which is not used for a general CBC. We were admitted, got platelets and antibiotics and moved forward. Sunday, she got more blood and her platelets were 38. Monday she was still chipper but also still running a fever. Her ANC was coming up, her red count was steady but her platelets were again less than 5. More platelets and antibiotics but plans to go home Tuesday morning. Next morning her ANC was over 1000 and her platlets were…you guessed it, less than 5. WHAT?????? More platelets, chemo (including PEG which only made it worse) and antibiotics and we were on our way home. Later that night both Keith and I knew something was terribly wrong. Kennedy was vomiting stomach fluid everytime she drank water. She had vomitted in the hospital so we didn’t think too much about it. At 10am she vomitted blood (old blood with what appeared to be clots but may have been tissue) but was not running a fever. I called the clinic and Sam (Kenn’s favorite clinic nurse) said that she would fit her in. We were not expected to return until Friday morning. We got here and guess what? Yes, her platelets were less than 5 and she had more bruises and petichiae (more everyday really). On top of it, her torso (both stomach and back) were really hurting her. They knew she was vomitting blood, was clearly bleeding and having severe pain. They ran all kinds of tests hoping something would at least rear it’s ugly head. (Oh, I forgot to mention that she had blood cultures done-looking for bacteria-in the hospital but nothing ever showed up) Several tests came back inconclusive because of the Heparin in her line so they had to access a vein. They poked several times with no luck (her veins were too little and damaged) so in Day Treatment, they had no choice but to access her through her head. You heard me right, the top of her head!! Dr. Olson and Dr. Norwood both showed up and weren’t agreeing on what it was or what to do. We were admitted to the peds floor for plasma and vitamin K. Plasma is RARELY given to patients and only because Kennedy had absolutely no ability to clot. If she had fallen, she could have literally bled to death in a very short time. Oh, and by this time Kennedy had begun to swell. Within a couple of hours, her deep inney belly button was flat and brusing. She received her plasma and morphine and within an hour and a half, her abdomen had grown by 4 cm. The resident was called and she was admitted to the PICU. There one of our favorite Drs. showed and went over all the possiblities from stomach bleeding to major organs uncontrollably bleeding in to her stomach. The options for treatment ranged from stopping the bleeding and healing to surgery and a respirator. She had more testing (requiring more sticks) and had she not been profusely bleeding they would have added a Hickman catheter. They had to find veins for at least 2 more IVs and immediately. It took about 12 additional pokes and nearly sedating her completely to get 3 more. They basically have to flood her body with clotting factors to stop the bleeding. This means pressure on her lungs and a respirator. The only way to do this was to have more access internally. They sent her for a CAT scan which revealed lots of fluid in her stomach and fluid beginning to pool in her lungs that is collapsing the air sachs. They do not know where the bleeding is or what is causing the fluid but Kennedy is not urinating so there is concern regarding liver and kidney function. That is all I know at this time but they have listed her in critical condition and I will post new info as soon as I possibly can. In the mean while, please PRAY and sending healing thoughts her way, spread the word by forwarding her website info to everyone and anyone and post words of encouragement to her guestbook. Right now I have 445 new e-mails so I may not be checking those but I WILL check the guestbook.

We love you all!

HOPE and FAITH-never lose them,

Mel

UPDATE:
Kennedy is in liver failure probably brought on by her chemotherapy. They have not yet started a course of treatment but will in the next few hours. The next few days will be critical in knowing whether this can be reversed or is permanant and requiring a transplant; it will all be dependent upon how much damage has occured and how she responds to treatment. Liver failure brings a whole host of complications and has already begun to affect her stomach and lungs. PLEASE PRAY FOR KENNEDY’S RECOVERY!

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