"Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened." Matthew 7:7-9
Kyle began steroids today! The doctor said that most babies respond very well to the steroids, but some do take a turn for the worst because of them. We are praying this gives Kyle the boost he needs to come off the ventilator. There was some debate amongst the doctors as to whether Kyle should begin steroids before they know more about his CMV. In the end, the consensus was that continuing on the ventilator indefinitely poses more risk than Kyle taking steroids while the CMV virus is potentially still active. As such, he had his first dose at 5:00 PM, and will continue receiving steroids every 12 hours for the next three days.
As far as the CMV goes, right now we are waiting on the results from a “quantitative” test that was done yesterday. A “qualitative” test was done originally to let us know that yes, he does have CMV. The “quantitative” test that is being done now will show how much of the CMV virus Kyle has in his system, and if it is an active infection now or lying dormant.
I probably should have done this sooner, but I didn’t really think of it. For those of you interested, I thought I’d give you an explanation of Kyle’s habitat and all the wires and tubes attached to him:
The top picture is where Kyle “lives” and is called an isolette. The bed is climate controlled for heat and humidity. Kyle wears a metallic probe, as seen in the 2nd picture. This probe is connected to the isolette and if Kyle’s body temperature becomes to warm or cold, the temp of the isolette automatically adjusts accordingly.
The third picture shows the other probes Kyle wears. The blue object on his foot is called a “pulse oximeter”. This device has a red light on it that shines though Kyle’s skin and somehow detects the oxygen level in his blood. The oxygen levels in his blood are then projected onto a monitor above his isolette (as seen in the fourth picture). Ideally, the numbers should be between 85 and 98 (the higher the better). If his levels go below 85, an alarm sounds until the oxygen level in his blood resumes to normal levels. This number is used to determine the concentration of oxygen that is fed to Kyle through his breathing tube. If it is consistently high, then the level of oxygen Kyle receives in his tube can be reduced until we hit 21%, if the number is low, then Kyle’s oxygen concentration is increased.
Also in the third picture are two round white probes on Kyle’s chest… one monitors his heartbeat and the other monitors his respiratory breaths per minute. Both of these numbers are also projected on the screen shown in the fourth picture. His heart rate is the top number and his respiratory breaths are the bottom number. Kyle’s ventilator is set to give him 20 breaths per minute, but he usually takes many more breaths on his own, as you can see from the bottom number indicated on the monitor. When this picture was taken (the third one), Kyle was receiving a blood transfusion. The red tube you see above Kyle is the blood going into his IV, which is on his right arm.
The fifth picture shows the tubes that go into Kyle’s mouth. The clear tubes on the bottom of the picture are his breathing tubes; one is used to give Kyle air while the other is used to suction any secretions that enter Kyle’s tube. These tubes connect to the ventilator. The other smaller tube is his feeding tube. Milk from a syringe is continuously fed through this tube directly into Kyle’s intestines.
Kyle began steroids today! The doctor said that most babies respond very well to the steroids, but some do take a turn for the worst because of them. We are praying this gives Kyle the boost he needs to come off the ventilator. There was some debate amongst the doctors as to whether Kyle should begin steroids before they know more about his CMV. In the end, the consensus was that continuing on the ventilator indefinitely poses more risk than Kyle taking steroids while the CMV virus is potentially still active. As such, he had his first dose at 5:00 PM, and will continue receiving steroids every 12 hours for the next three days.
As far as the CMV goes, right now we are waiting on the results from a “quantitative” test that was done yesterday. A “qualitative” test was done originally to let us know that yes, he does have CMV. The “quantitative” test that is being done now will show how much of the CMV virus Kyle has in his system, and if it is an active infection now or lying dormant.
I probably should have done this sooner, but I didn’t really think of it. For those of you interested, I thought I’d give you an explanation of Kyle’s habitat and all the wires and tubes attached to him:
The top picture is where Kyle “lives” and is called an isolette. The bed is climate controlled for heat and humidity. Kyle wears a metallic probe, as seen in the 2nd picture. This probe is connected to the isolette and if Kyle’s body temperature becomes to warm or cold, the temp of the isolette automatically adjusts accordingly.
The third picture shows the other probes Kyle wears. The blue object on his foot is called a “pulse oximeter”. This device has a red light on it that shines though Kyle’s skin and somehow detects the oxygen level in his blood. The oxygen levels in his blood are then projected onto a monitor above his isolette (as seen in the fourth picture). Ideally, the numbers should be between 85 and 98 (the higher the better). If his levels go below 85, an alarm sounds until the oxygen level in his blood resumes to normal levels. This number is used to determine the concentration of oxygen that is fed to Kyle through his breathing tube. If it is consistently high, then the level of oxygen Kyle receives in his tube can be reduced until we hit 21%, if the number is low, then Kyle’s oxygen concentration is increased.
Also in the third picture are two round white probes on Kyle’s chest… one monitors his heartbeat and the other monitors his respiratory breaths per minute. Both of these numbers are also projected on the screen shown in the fourth picture. His heart rate is the top number and his respiratory breaths are the bottom number. Kyle’s ventilator is set to give him 20 breaths per minute, but he usually takes many more breaths on his own, as you can see from the bottom number indicated on the monitor. When this picture was taken (the third one), Kyle was receiving a blood transfusion. The red tube you see above Kyle is the blood going into his IV, which is on his right arm.
The fifth picture shows the tubes that go into Kyle’s mouth. The clear tubes on the bottom of the picture are his breathing tubes; one is used to give Kyle air while the other is used to suction any secretions that enter Kyle’s tube. These tubes connect to the ventilator. The other smaller tube is his feeding tube. Milk from a syringe is continuously fed through this tube directly into Kyle’s intestines.
And finally, the bottom picture shows a veiw of Kyle's nurses' station. His nurse sits on the other side of the glass window and watches Kyle, plus one other baby. From here, she can constantly monitor how he is doing based on the numbers on Kyle's monitor.
Today has been one of both joy and sorrow. I am so happy to be home with Madison, but being away from Kyle is very difficult - more so than I even imagined. It helps that Joe is with Kyle and I am sure it will be beneficial for them to spend some alone time bonding. Joe was amazed at how much Kyle has grown since he last saw him. Joe was able to Kangaroo with Kyle, and is still doing so as I type this. I just spoke with the nurse and she said both are doing great.
Once again, thank you all for your thoughts and prayers. God's grace is apparent from your constant prayers. Even when things look bad, I can trust that He is listening to all those who invoke His name.
Much Love,
Jennifer, Joe, Madison and Kyle
Today has been one of both joy and sorrow. I am so happy to be home with Madison, but being away from Kyle is very difficult - more so than I even imagined. It helps that Joe is with Kyle and I am sure it will be beneficial for them to spend some alone time bonding. Joe was amazed at how much Kyle has grown since he last saw him. Joe was able to Kangaroo with Kyle, and is still doing so as I type this. I just spoke with the nurse and she said both are doing great.
Once again, thank you all for your thoughts and prayers. God's grace is apparent from your constant prayers. Even when things look bad, I can trust that He is listening to all those who invoke His name.
Much Love,
Jennifer, Joe, Madison and Kyle
2 comments:
I hope you and Madison will enjoy your "girls" week. As hard as it is to leave Kyle, it's great that you were able to switch places with Joe for a few days. I think you will realize how much you really do need a break. It's good for Joe to spend time with Kyle and learn what is going on with his care. They can have their "guys" week.
Welcome back to Ohio, Jennifer. I imagine this week will continue to be one of mixed emotions but there is nothing easy about that with which you are dealing and no easy solution.
The pictures and explanations you post regarding Kyle are so helpful and will serve as a great journal someday for Kyle to read. He will truly have a sense of the battle he fought, the devotion, sacrifice and care you all have extended and he will know how committed others have been interceding from afar on his behalf. This is a real testimony to LOVE!
I pray Joe can hold Kyle for many hours each day as we know how thoroughly Kyle responds. It will empower Joe knowing how he is helping his son. It will comfort you knowing Kyle is bonding with his dad. Enjoy Madison. Laura
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