Pacific Northwest Gardening: Charlize part II, 1 by Soferdig

Soferdig wrote:
Charlize is doing great and had a wonderful day PLAYING with her cousins. She laughed and played to total exhaustion with their joy. She slept for 2 days and rose to this next battle, it went well as below explains. I was with her over 2 weeks age and watched the simple joy of a child confined to a bed for 9 months break out with exhuberance by a simple walk to a park and a swing on the playground. Her smile and pure excitement to re-join the world was uplifting. Thank you God for these moments of happiness for Your child.
NJ Tube Placement Today

Posted 1 day ago
Her Dad wrote:\
I woke up this morning to the sound of Charlize’s TPN pump alarm going off. The double tone beeping sound is so distinct and always demand attention. Before I could respond to the alarm, I got a slight nudge from Leia and I was up to unhook her tubing. I stopped and turned off her TPN pump, but her Lipids still had 2 minutes left until they alarmed, so I quick washed my hands and prepared the flushes. After I unhooked her tubes and flushed her line, I covered her back up and successfully tucked her back in without waking her up. TPN has become such a natural part of our life now, that we sometimes forget that it is not natural. When I have moments of pause like this morning I remember that aside from this advancement is modern medicine, I would not be tucking her in again this morning. In Acts 17: 26 Paul tells us that God is the one that determines the time and place that we will dwell. This morning I am so thankful for the time and place that we dwell and am praising God for the medical advancements that we have available to sustain and care for Charlize, and that we live in a place that they are so freely accessible. When I went to throw away the tubing I heard Caedmon crying, so I got his bottle ready and gathered him up for his morning feeding. When I went to get him he was turned sideways in his bed and his bed was torn apart, it is so evident the different between little boys and girls from the very start; I cannot remember finding Charlize with her bed ripped down to the pad. After his feeding, I we sat together and I told him the story of Daniel and the Lion’s Den. Again I was reminded that before Charlize went in for her surgery 8 months ago she told us that she was going to be brave like Daniel. This is the fighting attitude that has stayed with her throughout this entire journey, and will continue to see her through.


As far as advancement in her condition, we have made none. She has continued to struggle with her vomiting, and still has a hard time with diarrhea and some soft stool, but lots of pain associated with pooping. She will hold it as long as she can because it hurts her so bad when she goes. She is also still waking up each night with severe stomach pain.


She goes in for her tube placement today at 12noon and will have to actual placement at 2pm. We are going to place an NJ tube again because her stomach is only emptying at seven percent an hour. We are praying that this placement will go perfectly well and quickly find itself in its place. She will be sedated for the procedure, and her body is becoming more immune to the sedation, so we are having to give her more and more each procedure; especially for the long ones. I cannot emphasize enough how much we need this tube to stay in. We are doing the NJ tube again, so it will be down through her nose and in to her small intestine. She usually has discomfort and vomits up the tube with 48-72 hours. The first 3 days are the hardest, so we are really praying that we make it through the first 72 hours. We are not going to feed her through the tube for the first 24 hours, to let her body adapt; then we will begin at a very minimal rate. We also have a new formula to try out, that has a lower osmolality (it has an absorption makeup on the structure level as blood plasma). We are hopeful that this will be the hinge point that things begin to turn around on. Thank you again for all your payers!


This message was edited Jul 26, 2011 11:17 AM

This message was edited Jul 26, 2011 11:18 AM