A mother's worst fear is for anything to happen to their child that would jeopardize their health and well being.
Earlier this week we started out with the hustle and bustle of back to work and back to school after the holidays. Normal week, everybody is well, and all is normal. On Wednesday I was working, getting off early and taking Kade to Children's hospital to have his sleep study done.
When Kade was around three years old, I started noticing that he was breathing funny when he was sleeping. There would be pauses when he would not breathe and then the next breath would be really deep and long as if he was catching up for the few breaths that he missed. This started happening alot and Andrew had me convinced that kids just breathe funny. Okay, I thought, I guess he is right. Some kids do seem to breathe funny and do strange things when they sleep. A year goes by, Kade is still have the pauses in his breathing and I mention it to our family doctor during a visit for strep throat in which it was mentioned that we get a consult for Kade having alot of throat infections and indeed I needed to mention to the ENT that Kade was having pauses in his breathing during sleep because that really needed to be addressed.
We consulted with an ENT and had Kade set up to have his tonsils and adenoids removed in which the doctor felt that this would cure some of the apnea Kade was having. Months went by and I noticed that there had not been that much of a change since his surgery, except for the fact that he was not having any throat infections anymore.
Kade started Kindergarten in August of 2011 and I noticed in the late afternoons I was dealing with a cranky little guy. I knew he was probably not sleeping well and was well aware that my child might actually have sleep apnea. It seemed to be getting worse. The pauses started getting longer and my poor baby was obviously overly tired during the day and falling asleep alot. Every Sunday like clock work Kade would fall asleep at church during preaching in which you could hear his heavy breathing and snoring. It was time to do something.
I made an appt. with Childrens Hospital to see Dr. Peyton Shirley, a pediatric ENT. My greatest concern was that there was pauses of about 15 sec. where Kade was not breathing during the night, it was happening alot, that he had started school and this seemed to be affecting him, and I wanted it checked out. I also told him that Kade stays sick alot with allergy symptoms, that almost always progressed to sinus infections, and that this was continuous. So at that visit, Kade had a severe sinus infection that needed to be cleared up first, then we would need to wait a month, come back, and have a sinus CT done, that would show any abnormalities that would block his breathing and therefore cause him to have sleep apnea. We went back in a month, sinuses cleared up, his CT scan of his sinuses looked completely normal, and I was asked if he was still having breathing problems since he was not sick at this time. Duh? Yes!!! This has been going on for a while. So, Kade was set up with an allergist at Children's and a sleep study would be scheduled. This was in October. Appt. with the allergy clinic was in November, and sleep study was scheduled for January 4th. January 4th?????? Wow, three months to get in for a sleep study.
We went to our allergy appt. and found out Kade was in fact allergic to household dust and dust mites. :S Wow! No pressure for this Mom! Dust is everywhere, I work full time, and live in a house with three little piglets, and one big pig, of which no one cleans up after themselves. Hmmmm....okay.
So, the holidays went as planned and everyone had a great Christmas and it was time to get back to the real world of the chaotic work-school schedule that allows minimal time for anything else.
On Wednesday I worked, rushed home, got Kade, and me and Kade head to Children's to have his sleep study done. I took him by myself. Being married to a Harris you learn to be independent and learn that it is better just to leave them out of most things unless there is no other way around it. Sleep study was going as planned. They had about 28 leads ( or whatever the correct word is) hooked up to Kade and had his head wrapped up to keep him from messing with the ones that were on his head. He aggravated the tech that hooked him up and after an hour of that poor man hooking him up, Kade looked up at him and said, "I'm about to rip everyone of these off!" Hahaha! Which was followed by the statement, "I just need my shotgun." The technician just looked at Kade and laughed and said that was the first time he had heard that one. I was slightly embarassed but realized they are their father's children.
We were getting ready to leave the next morning. Just waiting on the doctor to make his rounds so we could go home. I had asked the tech earlier if it had showed the pauses in his breathing, and he said that it did show the pauses but not really any snoring. At this time I was thinking that the worst case senario was Kade had sleep apnea and he would probably have to have a c-pap or bi-pap to sleep with, which was really going to be a trick. Two doctors came in, Dr. Mavis and Dr. Macris. They started with some small talk, then asked me had I ever heard of Chiari (pronounced kee are e) malformation. Yeah, I think I have heard of that before but, have no clue what it is. He proceeded to tell me that Kade did not have obstructive sleep apnea, but that he had central sleep apnea, which accounts for less than 5% of cases of sleep apnea and that he believed that Kade has Chiari Malformation in which the cerebellum, the part of the brain that is where the base of the skull and the spinal collumn meet, is protruding down past the skull and into the spinal canal. We would need to get a MRI, which he will need to be put to sleep for, and then I would need to meet with Dr. ????? and Dr. ????? because most of the time they treat this by taking a small section of the skull out to allow more room for that part of the brain and relieve the pressure that is on the brain stem so he could breathe normally and get the oxygen that he needs, but in the meantime we need to put him on oxygen at night. Next question was,"Does Kade have alot of headaches?" I replied, "Yes, he has always had alot of headaches. We thought it was due to his allergy and sinus problems."
My chest felt as if the weight of the world was on it. My biggest fear was coming true, that something was wrong with my child that Tylenol or an Anti-histamine could not fix. The doctor asked if I was scared and if I had any questions. "Yes, I'm scared, I'm very worried, but I don't have any questions at this time. We will just wait on the MRI." We waited on the nurse to come in and ask us where we lived so they could set up in home oxygen for Kade to use while he slept. I sat in the room, alone, with Kade playing and somehow found the strength to not shed a tear and to smile at my child when he looked at me. I didn't want him to get any anxious feelings or wonder why Mommy was upset because I realized he would see alot more of this place, and the longer we could help him to not associate this place with negative feelings, the better. I waited until I got in the car and my eyes were hidden behind my sunglasses and my sobs were unheard due to the radio, to have my breakdown. About 30 minutes after that, I called Andrew to tell him the news.
The oxygen has been set up, Kade is in Mommy's bed, and is doing well with that. He is still the same little boy he has always been. We just now know what is going on with him. The doctor assured me that he is the same little boy, will grow up normally and cause me all the problems any other kid would. We just have a little stumbling block along the way.
We are now waiting on our appointment for the MRI, which is taking longer to get scheduled than I anticipated because it has to be scheduled through the OR because he has to be put to sleep. I let them know I was getting antsy and they assured me that they would have it set up by Monday.
Please pray for our family during this time. When I think of Kade and what he is about to go through this scripture comes to mind:
"For I know the plans I have for you," declares the Lord,"plans to prosper you and not to harm you, plans to give you a hope and a future."