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!
Thank you for the update. Each time I read about Charlize's progress I find myself sighing with sadness. It seems like such a heavy burden for her and for her parents (and for you too, I'm sure), but it is clear that their faith keeps them strong and filled with hope and I am always inspired by their ability to seek out and find the joy in simple things like going to the park and playing with family.
I have been watching the progress regularly of Charlize and her family...my heart goes out to them. I marvel at the strength of her parents especially now that the Chemo is completed and their attempt to get her GI track functioning with all the trials and tribulations those efforts entail. Wishing God's speed to her recovery.
Sorry I missed you Jan while you were in Pac NW. Get your energy stored up for the year ahead. Teachers like you burn lots of mind and energy to make the classroom a wonderful place. Thank you for what you do. All of my previous teachers are still in my heart. Your class would be filled with many wonderful memories. Keep it up.
My fondest memories as a child are going to the beach with my family. Happy Charlize was well enough to enjoy the day. She looks like she is having a wonderful time. Nothing like sand between your toes!
I am so happy to hear Charlize is out of the hospital for the most part, though still with frequent returns for treatment, and back out in the world having a good time like the little adventurer she is. You have the heart of a portrait photographer as well as a gardener, veterinary wonder-worker, and adventurer extraordinaire, Sofer. Your photographs of her and her little brother are soulful. I really enjoy them. Thanks.
Our appointment with the dietitian from the GI clinic and the surgeon went very well yesterday. Charlize has maintained her weight over the past week and a half, so the dietitian was very happy with that and is keeping us on the same course for feeds. They are happy with her progress and are expecting her to make slow gradual progress over the next couple weeks. We are maintaining the same formula and will increase her rate as she tolerates it. The higher the rate we get her at during the day, the more hours she can be off at night. We are not as much concerned with the rate as we are the volume. She needs to be consuming 1100mls of formula within a 24 hour period to obtain her caloric and hydration requirements. She is at a good weight and her BMI is on track so we are not trying to have her gain weight at this point; we are just trying to maintain a healthy weight at which she can continue to heal and recover. She weighed in at a whole 27.5 lbs. with her little brother closing in fast; less then 10 lbs behind her.
The surgeon was also happy with her progress and said that the surgical site and her tube site looked as if they were healing up nicely. We are only 3 weeks into healing on Monday, so the site of the tube placement is still sore for Charlize, and is still oozing a bit as it heals completely. It is a small line that is cut and it has to heal in the shape of a circle. The best news about her healing is that she can now take normal baths and can submerge the tube sight. She is so happy to get to lie down in the bath tube and play in the bubbles – Yeah! No more showers! The only concern that the surgeon had, was with her poop. She is having regular bowl movements daily now – that is a huge praise and a tremendous change from were we were just 3 months ago, but they have no color. They are pasty and grey. Their concern is that their may be a problem with her gall bladder or her bile out put, but she is not jaundice, so they are waiting another week and drawing blood next week to see what her liver enzymes look like. The surgeon and her assistant were asking us about Charlize’s stools and we told them there form and coloration and they became concerned and almost not sure of it, and right then Charlize told us she had to go poop, so they got a fresh look at all we were describing. It is amazing the details God is concerned about in our lives and though it sounds crazy to call a potty run a blessing, in this case it most certainly was! Charlize is still not eating anything orally, but she is chewing on everything, so the surgeon is also going to refer us to a speech specialist that helps with children that have aversions to food or eating, or trade other oral stimulation for eating. Our next appointment will be at the end of October where Charlize will hopefully have her current GJ tube replaced with a low profile GJ tube. The difference is that this tube hangs out of her abdomen about 5 inches. The new tube will only protrude 3/4 of an inch.
Our last trip of the day was to the Child Psychology office to talk with the child/family Psychologist to give a quick report on how Charlize has been recovering/coping. The quick drop in served us very well and we were able to get her further referred to the Neuropsychologist on the team that can better serve us in a few areas. It usually takes 8 months to get in, but because Charlize is going to get a referral and she is a current patient we will hopefully get in with only a 2 month wait; which is great because none of our concerns are urgent, but would be good to rest our minds with proper evaluations in place.
She is go to the Oncology clinic next week to get her central line flushed and to receive her monthly dose of IV antibiotics, but other then that we should be able to stay away from the hospital and clinics for a few weeks. That is a huge change for us and a though we love everyone where; it is a much welcomed change. A good report for Charlize from everyone we saw, which made for a good day overall. Thanks again for all your prayers.
When Charlize was diagnosed with her cancer another friend of mine had her GD also diagnosed a month later. Well I am thanking God for our blessing especially today because that child passed away yesterday from her cancer. Please pray for Kayle her mom and their family.
Praise God from whom all blessings flow!!! Wonderful news. YAY for poop. Heehee. I've never cheered for poop before. I will let my little Sunday Schoolers know. Most of them have moved up, but I will spread the good news!!! Thanks for the update, Steve.
Charlize is learning to eat all over again. The body needs chewing, salivation, Swallow, hunger, and an other million senses to start her GI activity. She is actually taking lessons on eating. Wow what a fun class that must be.