Courage for Kennedy – Journal


December 24, 2005

Category: Gratitude,Treatment – Melenie – 12:45 am

Kennedy update:
It was two steps forward and one step back, but it is moving exactly how her drs expected. The GREATEST news of the day is that her medicine is en route!!!! It is true! After trying desperately to reach someone in Como, Italy with little success, Dr. Olson began working to find some here in the US. As a Christmas miracle, she did. Boy, is it funny how things work out. She was told the person who had it was in Cleveland but was given a North Carolina phone number. Darlene called and confirmed that it was North Carolina and after jumping through the hoops (just before 5 pm their time on the 23rd) to get the FDA to let Kennedy have it, an angel in disguise hand delivered 3 boxes to Fed Ex to be overnighted to our baby girl. This was the best news we could get! It will arrive tomorrow afternoon and she will recieve it shortly after. On Tuesday, when Italy reopens, Dr. Olson will have to reorder enough to restock NC and get Kennedy all of the doses she will need but this gets us moving on it. She told us that without this drug, the survival rate was about 20% and with it about 50%. Amazing how in May we groaned about a 70% cure rate at 5 years off chemo. We gladly are taking the 50%. Kennedy has some big things on her side-she only has liver failure as opposed to multi-organ failure and she has not had a liver or bone marrow transplant. The thing hurting her is that she also has the DIC to deal with, hence the need for this experimental drug. While it appears that it has not been studied on children, they do believe it will work the same way. They assured us it will not worsen her condition but there is the possiblity it will not help. A very slim possiblity! The rare times they have been able to use it for children they have had very positive results. We could not have been more excited just to hear a possible cure was on its way to Portland. It was God’s hand as every piece had to fall in to place to make this happen on the biggest holiday of the year and on such short notice.

She is beginning to fill with fluid again and they plan to drain it off tomorrow morning at the latest. It is affecting her breathing again, though not enough to require incubation. We had a couple scares this evening, first Kennedy was coughing and stopped breathing. Her oxygen saturation levels dipped into the 60s and her respiration, when she resumed breathing, was quick and shallow. They moved her back from respiratory therapy every 4 hours (or every 2 hours as needed) to every 2 hours. They also increased her Versed and Morphine to keep her calm. She is doing better but they are watching her blood gas levels very closely as she seems to struggle getting the CO2 out more than good oxygen in. Second, she was straining when she was agitated and burst a blood vessel in her eye. While this was very upsetting for me, the majority of the white part of her eye is now blood red, the nurse was not concerned and this helped me to relax a little. My biggest fear was spontaneous bleeding from her eye but this doesn’t seem to be the case.

I saw April and Josh Brenneman on the School Age side today and was thrilled to have the support of someone who has seen many trials over the last year. Her words of encouragement and empathy were priceless. Josh looked wonderful and has the most beautiful hair on his head. We rejoice with them as they are all home for Christmas this year and will continue to pray for them as they face the future and its obstacles. I’m sure we will have the opportunity to catch up with them again soon.

Also, many thanks to my sister, Katy, Kim and Becky for the food and tons of laughter. I REALLY needed all of it and my spirits were definitely lifted as we laughed about silly kids and husbands (not to mention all the other girl gossip). It was EXACTLY what my heart needed today. I’m so grateful my dad has been able to be here and could bring my little Bubba up today despite it being hard for all of us. Mom brought me the things I needed (thanks for the deo!) and took care of things at work for Keith so he could be here-and that is a HUGE blessing. Last, but certainly not least, thanks so much to my dear brother-in-law, Jeff, and his mother Kathie who have made it possible for my sister to spend 2+ nights with me. You all have no idea how much this all means. (Still keep the home cooked meals coming!!!) Oh, and thanks to Amy (Kennedy’s PT) for the muffins and all the nurses and staff who love our daughter so much that they find free time to visit and encourage us. And how could I forget Dr. Skau. He showed up to see me at my best (again) this morning and offer his soothing words that always take the edge off. He is the BEST pediatrician and along with the other docs (we love you too!) and the incredible staff at EPPC, they have supported us since before Bubba was born through every cold and stitch and staple and now the big stuff to make our lives so much easier and during this time, bearable.

Well, I hate to cut this short (for me anyway) but I am exhausted and Daddy is on watch to night so I want SLEEP and a shower!!!

Until tomorrow,
Mel

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