HAND IN HAND
I am now home and Kristin remains in Provo. She is settling into her routine of the daily iv antibiotics Gentamicin and Levaquin. (i hope i spelled those right) The Picc line is not as uncomfortable now and she is figuring out how to work with it a little better each day. As of today her ANC hoovers at 596. This is so much better than the last week. For you or I, our ANC (absolute neutrophil count...those awfully important, bacteria fighting, white blood cells that help fight infection) is around 5000, give or take. During maintenance the goal is for this count to dance between 1000-2000. I have no doubt that by the time her next appointment comes around next week she will be within the desired range.
The pseudomonas aeruginosa is responding well to the meds. Although we are both a bit frustrated with the fact that she was discharged without any wound care instruction. I am not surprised by this. It is quite nasty and painful and I am not sure quite how to approach the dressing changes, drainage, and wrapping. I did ask how this happened and the doc told me, "She had it in her gut." Although it never showed up in the blood cultures, (is was confirmed with the skin biopsy)"We are treating it like it is because of her symptoms."
Primary's has a great Immune Compromised Unit. It is quite large compared to Oakland, but with many similarities. I was able to meet some Moms of other patients in similar situations. Of course Kristin was the oldest, but we all shared that common bond. I am sure she is feeling awkward in pediatric hospitals. I can see the doctors and nurses who are adept in caring for adolescents and those who are not. It is very evident and I know she senses this. Maybe it is time to find someone who specializes in young adult hematology/oncology while she is there.......
My long time friend, and I mean back to 9th grade, Delores picked me up from the apartment and took me to the airport. It was so good to see her. Amazing how that is. Thank you so much dear friend. I will always love you!
It will be nice to sleep in my bed tonight. Wyatt has stayed by my side all afternoon. I am glad to have him there. I think the boys survived on cereal and eggs while I was away. So, no doubt they will be hankerin' for a nice warm meal....mmmm chili should do the trick.
Finally, I am grateful for the power of medicine, hope and prayer. There is not a doubt in my mind the three work together, intricately, and hand in hand. Although this is not the life I envisioned for my daughter, it is, none-the-less. I have put it all in Heavenly Father's hands. Then again, isn't everything?
The pseudomonas aeruginosa is responding well to the meds. Although we are both a bit frustrated with the fact that she was discharged without any wound care instruction. I am not surprised by this. It is quite nasty and painful and I am not sure quite how to approach the dressing changes, drainage, and wrapping. I did ask how this happened and the doc told me, "She had it in her gut." Although it never showed up in the blood cultures, (is was confirmed with the skin biopsy)"We are treating it like it is because of her symptoms."
Primary's has a great Immune Compromised Unit. It is quite large compared to Oakland, but with many similarities. I was able to meet some Moms of other patients in similar situations. Of course Kristin was the oldest, but we all shared that common bond. I am sure she is feeling awkward in pediatric hospitals. I can see the doctors and nurses who are adept in caring for adolescents and those who are not. It is very evident and I know she senses this. Maybe it is time to find someone who specializes in young adult hematology/oncology while she is there.......
My long time friend, and I mean back to 9th grade, Delores picked me up from the apartment and took me to the airport. It was so good to see her. Amazing how that is. Thank you so much dear friend. I will always love you!
It will be nice to sleep in my bed tonight. Wyatt has stayed by my side all afternoon. I am glad to have him there. I think the boys survived on cereal and eggs while I was away. So, no doubt they will be hankerin' for a nice warm meal....mmmm chili should do the trick.
Finally, I am grateful for the power of medicine, hope and prayer. There is not a doubt in my mind the three work together, intricately, and hand in hand. Although this is not the life I envisioned for my daughter, it is, none-the-less. I have put it all in Heavenly Father's hands. Then again, isn't everything?
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Comments
my name is Theresa and I also created a blog for my brother Dominic. He was diagnosed with ALL in the advanced stages on October 30, 2009 at 19 years old. I just happened to come across your blog by accident, really. I can't tell you how comforting it is to know that he is not the only one out there with this illness at such an odd age! We were having the same problems at the hospital as well, except it was in reverse. They're used to dealing with older people. It's not a pediatric hospital and my brother was the youngest one there by far. They were great you could tell that it made them sad. After we checked him in for his latest surgery, the lady at the front desk was talking to us and about what a nice young man he was and she actually started crying. I'm sure I speak for you when I say that this is the hardest thing I've ever had to go through. My heart has been broken and broken again. It is rare for people to have this illness at this age and I didn't know of anyone. Thank you for your blog.
Wishing you all the best,
Theresa
I ran across Kristin's blog when reading Rebecca's. Rebecca and Liz were diagnosed around the same time only Liz was not a rapid responder. We will continue to follow your families journey and pray for Kristin, your family, and your marriage.
Blessings ~ Christine Lothrop Cincinnati, Ohio