Today at 12:42am
Yesterday we had lots of meetings with the doctors discussing the next best step for Olive. A week ago when her temporary drain was put in the plan was to transfer her home to a hospital in the States once they took the drain out and she stabilized.
We have been looking into options of getting Olive back to the States via air, but it seems as if those options continue to not be working out. Some of this is due to the number of stops a smaller plane would need to make and issues with changes in pressure. We have also looked into going with a commercial flight and taking along a doctor and nurse from here, but there have been issues with getting a stretcher on the flights (for her isolette) and oxygen issues and policies with the airlines.
The other option would be to use an air ambulance service, but the cheapest option we can find is a minimum of $170,000 US dollars.
The doctors at our hospital are very well trained in medical evacuations and the specific requirements Olive would need to make a transfer at this point. They are suggesting for us to keep her here to do the VP shunt surgery. This is a major surgery where they place a shunt in her head that drains down her neck all the way into her peritoneum (in her abdomen). These shunts can stay in for a few years at a time if there are no complications. Usually doctors will wait as long as possible to do this surgery in small babies because of the risk of skin break down being greater the younger the baby is. However, in this circumstance the doctors think this would be the best option for Olive at this time.
The hospital we are at is very aware of our financial situation and the cap on our insurance so we have been working together to come up with the most ideal option for both Olive's care and our finances.
The doctors here at Samitivej have a connection with a government army hospital here in Bangkok and one of the top neurosurgeons there (who works back and forth between private and government hospitals). He was trained in Australia and speaks great English, and the doctors here have full confidence in him. He has agreed to take Olive's case. If Olive is transferred to that hospital the cost of the surgery will drop significantly. They also tell us that this hospital has a better equipped NICU then the one we had Olive at in Chiang Rai.
So...after much thought and talking with a neonatologist in the States, we told the doctors this morning that we would like her to get the surgery done at the government hospital and then we will see how it goes having her there. If we feel we would rather have her at the private hospital again after seeing how they care for her at the government hospital, then we will go ahead and transfer her back here to Samitivej. If she is here at Samitivej I know she will always have one nurse focusing only on her, and that there will be no visiting hour limitations...and that they really encourage skin to skin and helping me begin trying to breast-feed her as well. But we will see...maybe the staff at the Army hospital will be wonderful too and we will feel confident in their care for her.
They are saying Olive will need to stay in the hospital after the shunt surgery for another month, and then after that they would like us to stay at a hotel or apartment close by and practice caring for her on our own (breast-feeding...etc) for another month. Then if she has any issues during that month they can help us or if she would have any complications. After that time is up, if we feel confident in caring for her and if she is stable (if she can regulate her body temp and is off oxygen, and eating well) we could take a commercial flight home. Craziness.
So...i guess we will be here in Bangkok for another two months or so. This is not what we were expecting, but it seems to be our only current option and I think I can speak for both of us in saying that we feel a peace about it.
Rusty is in Chiang Rai tying up loose ends and packing up a few more things since we originally thought we might be leaving for home in the next few days. He will return tonight to be back in time for Olive's surgery.
So the journey continues...thank-you to all of you who are walking it with us.
Olive has been stable. The doctors think her apnea was maybe do to fluid overload in her lungs from replacing the fluid they were taking out of the drain. They put her back on the ventilator just for a few days to help her rest and help her gain weight easier. They said they can take it out today, but recommended keeping it in until her surgery is over since they would need to put it back in for the surgery anyways. She is having fewer and fewer seizures so that is good too. Today she seems to be very comfortable.
Pray that her brain would be able to expand again after the intense pressure it experienced from the fluid in her head...this is a concern the doctors talked with us about. Please continue praying for damaged cells to be made new...
Olive with her cute little shrinking head. This is after having the drain in for almost 6 days. Her head circumference has decreased from 38 to 33 cm over the last 6 days!