From
Lynette's blogDear friends and family,
Much has happened since my last post. Life has been such a rollarcoaster changing hour by hour, so I have only been updating immediate family because our time has been so limited.
Since my last post we were working towards moving Olive to Chiang Mai and waiting on a bed opening up in the NICU at the government hospital since the private hospital refused to take Olive calling her a "hopeless case."
Two days ago Olive became less stable and was having constant seizures for almost a 30 hour period. Rusty had gone to Chiang Mai with his mom the evening the seizures began to work with the consulate to get Olive a US passport, Social Security #, and birth certificates taken care of.
Here is the timeline of the last three days...
Monday night: Rusty and Colleen go to Chiang Mai. After leaving Olive begins having seizures and looking uncomfortable. The doctor was trying to up her milk intake to maximum intake to help her gain weight, but she wasn't tolerating it well and was throwing up and had a swollen little belly. Her head circumference had increased 2 cm on that day...I was starting to feel worried of what we were going to do if a bed didn't open up soon at the government hospital in Chiang Mai.
Tuesday morning: We get a phone call of someone who wishes to remain anonymous who would be willing to help us get Olive back to the States (miracle #1), Rusty meets with the US consulate in Chiang Mai who cancels all of their morning plans to focus on getting Olive's passport, SS # and residency as Michigan, and birth certificate finished all FREE of charge and finished by noon (miracle #2).
Meanwhile in Chiang Rai our doctor is saying that if Olive can't keep her milk down that she can't be transferred to Chiang Mai even IF a bed opens up. She is also having lots of seizures and our doctor thinks she shouldn't go. We are BEGGING her to let her go just to get this fluid relieved to help her with the seizures and to get her at least to a place where they have the resources and ability to surgically help her. Rusty then starts talking with our insurance about getting her medivaced to a private hospital in Bangkok where SOMEBODY can help her. This is approved and they say they will come later in the evening to get her.
Tuesday Afternoon:Rusty (who is still in Chiang Mai) is feeling super encouraged everything that has come together during the day.
Meanwhile I am in Chiang Rai next to Olive's bed watching her have constant seizures that are not being controlled by her anti-seizure medicines. She is now not able to have any milk because of her seizures so she is back on an IV and her veins keep blowing so she is getting poked so many times. My heart is getting more and more worried and breaking watching her look so miserable...and her head keeps growing.
THEN the doctor comes in and tells me that Olive has a severe case of pneumonia they just found. She thinks it is most likely from her aspirating milk from throwing up the night before. She tells me she thinks she shouldn't go to Bangkok because she is unstable. She also mentions that if we don't give Olive antibiotics for the pneumonia that the infection will most likely take her in a few days and this is her suggestion. Being next to Olive for the last 24 hours and watching her look so miserable I felt like maybe this is where we are supposed to step back and stop forcing her little body to work so hard. That maybe we should just let her go, let her be with Jesus where her body will be made whole and she will no longer be in any pain. Tears are flooding as I call Rusty and tell him the news the doctor just told me. We cry together on the phone and Rusty says he is leaving Chiang Mai now and will be there soon.
Tuesday Evening: I tell our doctor that we need the evening to talk together and pray about not giving Olive antibiotics and we will tell her our final decision in the morning. Colleen decides not to fly out after-all, thinking she will want to be there for the funeral. Rusty and Colleen drive back that evening and cancel the medivac team for that night and puts them on hold until the morning. Rusty and I call a neonatologist in the States to talk through our current confusions we find ourselves in. We go to sleep crying that night feeling a deep sense of sadness and trying to find that still small voice that seems lost...exhausted.
Wednesday Morning: Rusty goes to the hospital to talk with our doctor with Libby and our friend Blah. Rusty is preparing to tell the doctor that we are planning on not giving Olive the antibiotics and letting her go. However, when he arrives Olive is peacefully sleeping without any seizures. The doctor comes in and tells him that maybe Olive doesn't have pneumonia after all and instead that she has some sort of chronic lung disease that means she may need to be on a ventilator for the rest of her life...and that we should let her go.
Rusty gets upset about her misdiagnosis about the pneumonia and tells the doctor that today Olive is leaving Chiang Rai and we are getting her to a facility in Bangkok where somebody can begin relieving the pressure in her head. The doctor says she isn't stable enough and Rusty says he would rather risk leaving and help her somehow. He calls insurance and a medivac team is approved and will arrive in late afternoon.
Libby and I drive home to our house and pack up our things in case we go from Bangkok directly to America. We have one hour to pack up and then drive back to the hospital. No clue whether we are leaving for one week, one month, one year, or for good. Mixed emotions and a feeling of numbness of not wanting to grieve good-byes here if the future is so unclear.
Wednesday Evening: Rusty and I say our good-byes to the wonderful nurses in the Chiang Rai ICU that we have grown to love. We leave with Olive in a small plane and medivac team to Bangkok. Olive remains stable during the transfer.
Once we arrive at this AMAZING hospital we are met by a team of doctors (neonatologist, neurosurgeon, cardiac specialist, and internist) who are ready to care for Olive (all of whom speak amazing english). They tell us to relax and they assess her, talk together, and do a bedside ultrasound. Then we all met together for a consultation meeting and they go through the different options of treatment at this stage and suggest doing a ventricular tap (a temporary drain in her head to relieve some of the fluid that stays in for 5 days). We explain to them our insurance issues as well so that they understand we are working towards getting her back to the States as soon as she is stable enough to get her on Medicaid, and they are very understanding.
Last night they went ahead with the temporary drain and everything went well. She is in her own ICU room with a nurse and doctor caring for her at all times. They discount the price for us to sleep in the hospital in a room down the hall from Olive and tell us we can visit her at any time and if the doctor needs to talk he/she will come and knock on our door. Amazing.
Now we are having meetings to discuss evacuation options in the next 5-7 days, and back-up plans in case she is not stable to go at that point. The staff at this hospital have been incredible with helping us talk through issues with insurance, evacuation issues, explaining in detail their findings about Olive from tests they are running. They also talk to her like she is a little sweet baby and look at her closely..smile at her. She is being treated like a little person with value, and it means so much to us.
Also, about the chronic lung disease...they are saying she may have issues or she may not. They say she may need to have a little oxygen for another month...or another 2 years, but that she will not need to be on a ventilator at this point. Quite a different story then we heard from our last doctor.
We are so thankful to be here in this place, at this moment. I could keep going, but this is getting to be MUCH to long for your weary eyes to read. I will try to post again tomorrow.
Much love,
Lynette
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