I went into Jude's appointment today with no real stresses (first clue that bad news was lurking). I felt confident in the appointment. I felt like the worst the doctor could tell me was that Jude had not improved and we would stay on the oxygen for another year, and I was okay with that. I was not, however, prepared to hear that not only did Jude not improve his sleep, but that it had gotten significantly worse.
I sat in the office kind of stunned as I heard that Jude obstructed his sleep 75 times. The last time was around 43 I believe. This dropped Jude from the mild to moderate category all the way to borderline severe. He even discussed the option of putting Jude on a C-PAP machine at night, but both of us agreed that he would never wear it.
The doctor also ordered an x-ray of his head and neck. He wants to see if his adenoids have grown back or he has inflammation that could be obstructing his sleep. He said his tonsils could also play a roll, but he felt like Jude's facial structure was his biggest problem. However, we are not on board with a very invasive facial reconstructive surgery at this point.
The doctor also mentioned doing another bronchoscopy to see if Jude's airway is inflamed again. And that maybe we should repeat his allergy testing. Then he talked about getting off the oxygen in Jude's teen years. My heart sank. It's completely sunken now writing this post to be honest.
As I sat there with this giant lump in my throat, the bad news kept on coming... the doctor gave Jude yet another diagnosis to add to the list.
Dr. T diagnosed Jude with Restless Leg Syndrome. He said that Jude not only set the record for most limb movements during a sleep study, but he doubled it. Jude had 932 limb movements during the test! And to add to the matters, Jude's heart meds, you know the ones that give him nightmares, are playing a big part in all of this.
So now we are going from seeing the pulmonary specialist about twice a year, to seeing him every two months.
I did a pretty good job holding it together until I was leaving the lab and the admit clerk told me how big Jude was getting and that she couldn't believe how big the baby is already.
It was the straw that broke the camel's back.
Although the clerk was very nice, I don't want to be on a first name basis with the admit clerk at Our Lady of the Lake.
Reality swallowed up my heart and weighed it down even further. I cried all the way to the car. But once I had my little cry, I was fine. I'm still a little down, but not a mess or anything.
God's timing is just something else, I'll tell ya.
Yesterday, I worked in the nursery so Lane gave me a run down of the Sunday School lesson and the sermon.
Lane told me that the lesson in Sunday school was out of Daniel, and that he had a scripture that spoke to him and wanted to share it with me.
"If we are thrown into the blazing furnace, the God we serve is able to deliver us from it, and he will deliver us from Your Majesty’s hand. But even if he does not, we want you to know, Your Majesty, that we will not serve your gods or worship the image of gold you have set up.”
He teared up as he explained why the passage spoke to him. He said "God WILL deliver us out of our worries with Jude, and that He will deliver Jude from his medical problems. And God will get us through this rough patch right now. But even if He doesn't, we are still going to serve Him because He is our mighty God."
I don't think I need to say anything else.