They tried to bag her through the ventilator today to know what pressure they need to adjust the regular vent just incase they wean her off from the oscillator, they were happy that she was easy to bag. This is detaching her from the oscillator and giving her breaths through the ambu bag. “Easy to bag” means they didn’t need to put pressure bagging her to keep her oxygen saturation up. This also means she did not clamp her lungs. It was another miracle and answered prayer for me/us. Now her mean pressure on the oscillator is still 19 and they will wean her to 18. If she continues to tolerate it, she might me transitioned to a regular vent tomorrow. Or maybe they will wean until they reach 16. Either way, we told them we will be ok with whatever they think is good for her.
We are very happy with what they told us. We thank the Lord for His miracles. And we thank all of those who prayed for her. The oscillator (high pressured ventilator) has been helpful in breathing totally for her. The regular ventilator will give her lungs a chance to function because that’s how it is suppose to be.
So we will pray and ask you (anyone who is reading this or who knows her story) for prayers that she will tolerate it. Please we ask for prayers that her o2 saturation will be above 90’s on the actual and post transition from the oscillator to a regular ventilator, and her heart rate and blood pressure remains stable since she is sensitive to touch. We will pray that no untoward event or ph crisis will occur on the actual and post transition of the 2 vents.
To update, she still has diarrhea but no result of cultures has come up yet. So, they temporarily stopped the feeding and her oral sedation meds. They are giving her tummy a rest. But I believe that they continue to give the oral med for pulmonary hypertension.
Her oxygen saturation has been relatively stable this week. She still have “events” where she de-sats and that’s when she get’s stimulated. But mostly the problem of her being stimulated is seen on heart rate and blood pressure as it continues to increase whenever she gets touched, changed diapers, changed position or bathed. There are times she goes back to normal right away but there are couple of days that it takes a long time before she goes back down to normal numbers. I see them giving her sedation meds to calm her, a number of times and sometimes increased doses, just to make sure she is comfortable. The frequency, I have to be honest, is making me uncomfortable but I understand that it has to be done because it’s what she needs to be comfortable and out of pain or agitation. Otherwise, it may lead to ph crisis and another attack which I pray will not happen again.
We celebrate her better days and be stronger for her on the days that she needed more monitoring. I have my moments but when I hold her leg, touch her face and kiss her leg.. I feel her again and I feel the need to be stronger for her. It is difficult to be strong but when I read all the messages from friends and families, it gives me inspiration. Even the nurses here helps me go through with all of these and I am grateful. When I am in my lowest, God sends angels even on strangers and talk me literally out of my low emotions.
Thank you for all the prayers. We are so grateful for everything. We thank the Lord for holding us up this time and we know He will never leave our side. We thank Him of the miracles he makes for our little angel. We know He never left our baby’s side. Bible says “Ask and You Shall Receive,” and you have to be specific when we ask. We pray for our baby’s healing.
“Each day we ask in prayer that Baby Dana will tolerate being weaned from the oscillator to a regular ventilator, that her oxygen saturation remains above 90’s and her ventilation numbers are normal, that there is nothing that leads to Pneumothorax or lung collapse or building up of carbon dioxide, that her pulmonary hypertension will be manageable, that her heart rate and bp remains normal even in the slightest stimulation, that her GI will function well again, and that she is still neurologically stable amidst all the medicines given to her. We pray for her comfort and total healing.”