Sunday, May 1, 2016

May 1, 2016

Jonathan Hunter, my son-in-law stayed with Jonah through the night last night. Jonah was kept "on ice" and fan all through the night while they fought his fever. His fever finally subsided late morning, this morning. They took out his bolt for monitoring his ICPs and now sports another set of stitches in his head. There is only one last drain in his head, which also monitors ICPs and allows them to control the amount of cerebral/ spinal fluid in his brain. This is the drain that may have to become permanently internal should the natural drain at the base of his brain remained plugged. The doctor explained this would be a simple procedure and he won't feel the shunt once it is placed and draining into his abdominal cavity. They will be testing to see if this drain is plugged over the next 4-8 days. He is down to approximately 8 IV medications, and an IV food. A bag of formula, Tylenol, crushed pain pill and a crushed blood pressure medication empties directly into his stomach tube. Insulin is given IM based on the level of sugar in his blood. He is not diabetic, however when you are on a continual tube feed, your blood sugar remains too high and will allow bacteria to grow in the blood stream, so he is given insulin to keep the blood sugar controlled. They cultured his blood, mucus from his lung and urine today looking for possible infections causing his high fevers. We won't know anything for at least 12 hours and maybe as long as 72 hours before we have results. He continues to do a great job breathing on his own, however is requiring quite a bit of oxygen help due to his tissues being saturated with fluid-lungs are like sponges and take on that fluid too. His respiratory doctor anticipates that once his healthy kidneys slough off enough of the excess fluid in his tissues, his lungs will take in a healthy level of oxygen. He remains on the ventilator, which is set at a sensitive setting in order to catch any deficits in his ability to breathe. That machine honks and beeps off and on all day and night. His lungs are still suctioned several times day and night, however they have notice there is a decrease in the amount of mucus they are retrieving in the past 12 hours. His digestive track is still not awake and this situation is believed to be one of the culprits of his high blood pressure and lack of ability to be at a level for adequate nutrition and calorie intake. They have been continuing the process of pulling the contents in his stomach out and measuring it to see how his digestive track is working/not working. They come and suction out his mouth and clean his teeth and gums with a sponge and hydrogen peroxide formula several times in a 23 hour period and then place lip balm on his lips to keep them from drying and cracking. Now that he is tolerating movement, he is turned from side to side and to his back all day long to prevent bed sores. His trach site is also cleaned several times a day, usually right along with his breathing treatments. Jonah's care is a laborious and intricate dance of scientific wonder. It is a testament to me of God's ability to teach and reveal. Those who have studied and researched were given inspiration and skill. Each decision made on Jonah's behalf has several intricate parts to consider - always a discussion about good, better and best for each situation, understanding that when you make a move with one thing it affects many other things in Jo's system.
As I kissed Jonah good night tonight he reacted by moving his head towards me and
moving his mouthπŸ’—πŸ˜˜πŸ˜ Elder Muki Gali sent a scripture today which is so appropriate: Doctrine and Covenants 104:82
"Inasmuch as ye are humble and faithful, and call upon my name, behold I will give you the victory. "
I love my boy! #justwakeupjonah

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