Dear friends and family,
I just got off the phone with Rusty. Insurance will only pay for the medivac team and not more than 10,000 US dollars above that. For now we will be staying at Chiang Rai Regional Hospital and looking into options. Feeling in shock about this insurance coverage. Can't even wrap my mind around the person who wrote that policy.
Love,
Lynette
Tuesday, October 6, 2009
A rough day...please continue praying.
Dear friends and family,
Each day we feel like Jesus has given us just enough strength to get through the day...today is a day where I feel like I'm on the verge of breaking down with each new piece of news the doctors give us.
We arrived this morning to the hospital to find out that after a chest x-ray last night they found infiltrates in Olive's lungs, and they diagnosed her with pneumonia. She has also lost her bowel sounds and has been having quite a bit of gastric residual in her stomach so they have stopped giving her colostrum until her little digestive system starts up again.
Her WBC count has increased...most likely due to the infection in her lungs.
This morning we started making phone calls to our insurance company (Talent Trust Insurance) which is under Aetna and got a return phone call that they have looked over her information and talked on the phone with our neonatologist and brain surgeon. The insurance company thinks we need to move Olive to a private hospital in Bangkok ASAP, and both doctors agree that she is stable enough and would recommend this as well. They would pay for her to be flown with a medical team to this top children's hospital.
However, they are telling us that the cap for coverage for newborn care is 10,000 US dollars...which is RIDICULOUS. That will barely cover her for three days down there at this other hospital. We have been on the phone with insurance ALL day so far and Rusty is finally talking to the top supervisors who know all about our situation and will make a decision if she will be fully covered or not around 4 this afternoon. Our medivac team is on hold until we find out if she will be covered by insurance and if they tell us she is covered she will be transfered most likely tomorrow. If she is not covered we will be staying here at our current hospital.
We are at the end of ourselves today...I'm so worried about the infections in her little body...and then to add the stress of a transfer...and an imminent surgery. Everything feels out of our own control. We are waiting for an answer and praying for peace to surround us in the midst of this chaos and worry. We know Jesus has a plan...it has just been a day where trusting that plan feels more difficult. No matter the outcome we will continue to serve Him...the one who entrusted Olive to us as a gift.
Thank-you for your prayers.
Love,
Lynette
Monday, October 5, 2009
Ultrasound and CT Scan Results...
Dear friends and family,
We had a very intense day today and are feeling pretty drained. This morning Olive had an ultrasound of her brain to assess if there was any further bleeding, or an increase in fluid around the brain. The results showed that there has been no additional bleeding. However, the area with the bleeding has not absorbed back into the circulation of the brain causing an obstruction in the cerebral spinal fluid. This increase in fluid around the brain (hydrocephalus) is causing some pressure on the brain, as well as an increase in her head circumference. After the ultrasound this morning the brain surgeon decided to send Olive for a CT Scan of the brain to see more clearly what is going on. The CT scan confirmed what they had seen in the ultrasound.
The doctor told us that the treatment will be to place a temporary shunt/drain into her head to remove some of this fluid. He says there is a small chance that it could resolve on its own if her body would absorb the blood from the hemorrhage, but he suggested getting arrangements in place for surgery in case that becomes the only option. The good news is that because her head is so soft, and her fontanels haven't yet closed it will allow her head circumference to increase and make room for this fluid...and the brain surgeon said it is not an emergency surgery, but suggested within the next week or so we would take action.
Currently Olive has an infection in her blood, though she received antibiotics for it. We will wait to see the results of her CBC (Complete Blood Count) tomorrow to see if her WBC (white blood cell) count has gone down at all, which would show a decrease in infection in her body. Worries from the doctor about giving her this shunt are that she has such weak immune system, she is only 1.295 kg, and fears of using anesthesia for a pre-term 28 week old baby. There is of course an increase in the risk of infection with any surgery.
Good news for the day...her bilirubin levels have dropped and she is no longer under photo-therapy. She continues to do well on the colostrum and day by day they have been increasing her intake. Today she was only receiving 21-25% oxygen. Her heart rate and blood oxygen level remained stable all day. They have also changed the ventilator settings to make her use her little lungs more and she is adjusting well and making good progress.
Tomorrow we will be writing up reports of all of her treatments, diagnosis, and test results and making phone calls to doctors here in Thailand, as well as neonatologists and brain surgeons we have been recommended to contact by our friends and families in the States. We will then be trying to figure out where the best place for her treatment will be, and finding a neurosurgeon who has had experience placing shunts in pre-term babies...as well as finding anesthesiologists who have experience with pre-term babies. Pray for wisdom as we make these decisions.
We have also been trying to sort out lots of details with our insurance, so please pray for this as well.
We are so thankful to have my mom and dad here during this time and for all of the love and support they are giving us. Our dear friend Ghan also stayed with us all day helping us with translating during our meetings with the neonatologist and brain surgeon. Bethany and Libby have been so helpful in so many ways too. Sherry Palsrok is also here as a support which has meant a lot to us. I could keep going and mentioning those in this community who have been so thoughtful during this time but my list would get too long for tonight.
We want to thank so many of you who spent time in prayer for Olive this morning. We continue to ask Jesus to touch her little body...to fight against infection, and to protect her brain despite these complications. We also have been thankful for the good signs we are seeing with her respiratory system and digestive system. We continue to have hope for this little one...
Much love,
Lynette
We had a very intense day today and are feeling pretty drained. This morning Olive had an ultrasound of her brain to assess if there was any further bleeding, or an increase in fluid around the brain. The results showed that there has been no additional bleeding. However, the area with the bleeding has not absorbed back into the circulation of the brain causing an obstruction in the cerebral spinal fluid. This increase in fluid around the brain (hydrocephalus) is causing some pressure on the brain, as well as an increase in her head circumference. After the ultrasound this morning the brain surgeon decided to send Olive for a CT Scan of the brain to see more clearly what is going on. The CT scan confirmed what they had seen in the ultrasound.
The doctor told us that the treatment will be to place a temporary shunt/drain into her head to remove some of this fluid. He says there is a small chance that it could resolve on its own if her body would absorb the blood from the hemorrhage, but he suggested getting arrangements in place for surgery in case that becomes the only option. The good news is that because her head is so soft, and her fontanels haven't yet closed it will allow her head circumference to increase and make room for this fluid...and the brain surgeon said it is not an emergency surgery, but suggested within the next week or so we would take action.
Currently Olive has an infection in her blood, though she received antibiotics for it. We will wait to see the results of her CBC (Complete Blood Count) tomorrow to see if her WBC (white blood cell) count has gone down at all, which would show a decrease in infection in her body. Worries from the doctor about giving her this shunt are that she has such weak immune system, she is only 1.295 kg, and fears of using anesthesia for a pre-term 28 week old baby. There is of course an increase in the risk of infection with any surgery.
Good news for the day...her bilirubin levels have dropped and she is no longer under photo-therapy. She continues to do well on the colostrum and day by day they have been increasing her intake. Today she was only receiving 21-25% oxygen. Her heart rate and blood oxygen level remained stable all day. They have also changed the ventilator settings to make her use her little lungs more and she is adjusting well and making good progress.
Tomorrow we will be writing up reports of all of her treatments, diagnosis, and test results and making phone calls to doctors here in Thailand, as well as neonatologists and brain surgeons we have been recommended to contact by our friends and families in the States. We will then be trying to figure out where the best place for her treatment will be, and finding a neurosurgeon who has had experience placing shunts in pre-term babies...as well as finding anesthesiologists who have experience with pre-term babies. Pray for wisdom as we make these decisions.
We have also been trying to sort out lots of details with our insurance, so please pray for this as well.
We are so thankful to have my mom and dad here during this time and for all of the love and support they are giving us. Our dear friend Ghan also stayed with us all day helping us with translating during our meetings with the neonatologist and brain surgeon. Bethany and Libby have been so helpful in so many ways too. Sherry Palsrok is also here as a support which has meant a lot to us. I could keep going and mentioning those in this community who have been so thoughtful during this time but my list would get too long for tonight.
We want to thank so many of you who spent time in prayer for Olive this morning. We continue to ask Jesus to touch her little body...to fight against infection, and to protect her brain despite these complications. We also have been thankful for the good signs we are seeing with her respiratory system and digestive system. We continue to have hope for this little one...
Much love,
Lynette
Sunday, October 4, 2009
New prayer requests and an update...
Dear friends and family,
We continue to be overwhelmed by the number of people praying for Olive and us during this time. I'm not sure if I have ever sensed Christ's body around the world coming together to pray for someone. Daily we are overwhelmed to tears while reading e-mails, prayers, poems, and words of encouragement from close friends and even strangers. We have churches praying for Olive all over the US, Canada, Nepal, Akha villages here in Thailand, the underground church in Vietnam, churches in Korea, churches on the Navajo reservation in New Mexico, England...and the list continues. Friends of mine who haven't prayed in months or years have been praying for her numerous times a day.
The week has been the biggest emotional rollarcoaster we have ever experienced. At the beginning of the week we were talking with the doctors about letting her go, for fear of her little body suffering so much...and then we saw answers to prayers and her condition improving little by little each day. She had every complication in the book, and yet her condition continues to stabilize. She is continuing to respond well to the colostrum, and today the doctor increased her intake to 1 cc/6 times a day. She had another stool today which is evidence that her little digestive system is working well. Her platelet count is normal, as well as her hematocrit and hemoglobin. Her bilirubin levels continue to drop. She has retained the ability to blink and close her eyes as she sleeps. Today they had her on room air for most of the day (21% oxygen)...and receiving 25% for part of the day, and her O2 blood saturation levels remained between 89-96% which is great news.
The current concern is that each day her head circumference continues to increase little by little. Tomorrow morning at 9:00 am (Sunday evening for those of you in the States) we have another ultrasound on her brain to assess the current state of swelling. How I understand it is that with the bleeding she experienced in her brain, her little head is compensating for that increase in space and expanding to reduce the pressure. After the ultrasound in the morning we will sit down to have a meeting with the brain surgeon, neonatologist, and another specialist. We will then talk about the next step in planning for her treatment...if the hospital here is adequate to care for her or if we will need to transfer her to another hospital in Chiang Mai, Bangkok, or the States if she is stable enough.
We are feeling anxious about the ultrasound in the morning, and would ask your prayers for us. Pray against infection for Olive as she is transported to the ultrasound room. We are in a hospital overwhelmed by patients over flowing into the hallways where we walk through to get to the ultrasound room.
We have grown to really love and respect the nurses caring for Olive. They have been so attentive to her needs, and we have much trust in their wisdom in caring for her. We have also grown to trust the doctor caring for her.
Culturally here in Thailand children with disabilities are looked down upon. I remember volunteering at an orphanage outside of Bangkok eight years ago and watching monks come and visit the hundreds of mentally handicapped children and tell them, "If you do better in this life, your next life will be better." Earlier this week our doctor, Thai friend, and two nurses sat us down for a meeting and asked if we wanted to go ahead and give Olive platelets that she needed and a new antibiotic, or if we would like to withhold the treatment and "let her go." They all encouraged us to "let her go" and withhold the treatment and said she would have about a week before her little body would shut down. They told us that if she survives and is handicapped and possibly blind it would be unfair to her. We cried a lot during that meeting, prayed, and went with our hearts....to continue treatment and commit to caring for her...unless we come to a point where we feel her little body can't undergo any more aggressive treatment.
We go through our days asking for more miracles...more healing of damaged cells, and quality of life for this little one.
Love,
Lynette and Rusty
---This song has been on my mind all day..."You are Still Holy" by Kari Jobe
"Holy, You are still holy even when the darkness surrounds my life
Sovereign, You are still sovereign even when confusion has blinded my eyes
And Lord I don't deserve Your kind affection
When my unbelief has kept me from Your touch
I want my life to be a pure reflection of Your love
And so I come into your chambers and I dance at your feet Lord
You are my Savior and I'm at Your mercy
All that has been in my life up till now belongs to You
You are still holy.
Holy, You are still holy even when I don't understand your ways
Sovereign, you are still sovereign even when my circumstances don't change
And Lord I don't deserve Your kind affection
When my unbelief has kept me from Your touch
I want my life to be a pure devotion to You.
Subscribe to:
Posts (Atom)
Posts
