As I sit in a dark, hospital room illuminated only by the light of my laptop, and listening to the sounds of my little man breathing heavily, I find myself so blessed. I am humbled by the flood of comments, scriptures, emails, phone calls and offers to help. Your prayers lifting up my baby boy and our family are special gifts to us. While weak physically, emotionally and spiritually right now, your prayers are filling me with the strength I need to be there for my boy. So many of you have reminded me that when two or more are gathered in his name..... thank you! Both Scott and I could not ask for more.
This is where we are. Earlier this evening, I once again called our hero, Kai's cleft surgeon who is in a city about 4 hours from us. He has nothing to do with what is happening, but is well known and very respected at the hospital where Kai is at. After speaking to him, we were more at ease and understood their decision.
At 3:45 AM this morning, the ICU doctor called him to confer about Kai's condition. They both agreed that we should give Kai another 24 hours on steroids to see if it reduces the inflammation that is aggravating the obstruction causing the apnea. The steroids have helped, but not enough. Both Scott and I were frustrated, but we both agreed to wait until noon tomorrow to decide whether or not Kai would be moving to Miami.
About an hour later, the pulmonologist/sleep disorder specialist came to see Kai. Kai had been put under heavy sedation in order for him to rest, because he's gone almost 36 hours with barely any sleep. It just so happened that about 20 minutes before the pulmonologist walked in, Kai had woken up and was watching his "Monster Truck" videos. As we conversed about his apnea with the doctor, Kai slowly slid back into sleep, this time without his oxygen mask on. Within minutes, he was in full apnea mode, gasping for air, chest caved in, and his little eyes would open to the size of dishes as fear set in that he couldn't breathe. The doctor immediately said that a sleep test would not be necessary. He said it was a severe and classic case of obstructive sleep apnea and his recommendation was that Kai be taken to an expert ENT team at Miami Children's Hospital. There a scope would be done, under general anesthesia, to find out exactly what the obstruction is and the problem would be corrected.
Where we are now. We have now all agreed that this is what is needed to move ahead with the situation. Tomorrow morning the ICU doctor will contact the ICU team at MCH and a rescue helicopter will be sent to pick Kai up. Kai will NOT be sedated for this ride.
Our specific prayer requests:
1. There are 2 helicopters available for this. One is larger than the other. There have been certain instances in which a parent HAS been allowed to travel with the child. Our little guy scared to death right now with everything that is happening. Please pray that our Heavenly Father allow the larger helicopter to be available and that the team permit Scott to travel with Kai. We have decided Scott would be the best choice for two reasons. a) I get horribly airsick on helicopters. I've been on two and both times I've been sick within minutes. b) Since Kai will not be sedated, he and Daddy could share a special "ride", therefore not traumatizing him further.
2. That the ENT team that examines Kai be filled with God's wisdom and guidance as they proceed to find out the exact reason his airways are obstructed and most importantly that whatever obstruction they need to remove is not something that will regress or impede Kai's speech from improving.
3. And most of all, that God's hands protect Kai and Scott (and myself as I drive alone to Miami) during their flight. May the trip there be one that will result in a positive conclusion to this situation with the obstruction being removed, his speech not be damaged in the process and may our stay away from our other children not be prolonged.
4. T hat the timing all work out so that I could leave Fort Myers in a timely manner and arrive at the hospital in Miami by the time the helicopter arrives s.o that I could be present as Kai is admitted into the ICU there. May his little heart not fear and may God's peace that surpasses all understanding fill our hearts.
5. Please pray for my Mom who will be staying with AJ and Anna Grace since my sister had plans to go out of town this weekend. My Mom is almost 70 years old and amazing. But I also know how hard it is to keep up with 2 toddlers. May she find the energy she needs to care for them and for herself during her time alone with them.
Thank you again my dear friends. I will post again as soon as I can.
Loving the Jesus in each and every one of you,
Your sister in Christ,