Hello all....Gage had a sleep apnea study at Duke on 8-9-Monday night. Beth and I arrived with Gage with 3 back packs full of stuff for one night.  We started laughing because there was this girl and her father there and she was for the study too and she had no back pack-nothing with her. Beth and I needed a U-Haul for the items we were moving in. We were prepared. We were put in a regular exam room (during the day) and at night they move in 2 beds. One bed for Gage and one for ?beth and I?  Well poor Gage gets hooked up to all kinds of probes with cement stuff on his head, cheeks, mikes-snoring on his throat and nose; 2-types of cannulas up his nose; 2 tight belts-one around his chest and the other around his waist; stickers on both legs with wires; chest wires; and a probe on his big toe taped really well.  Then the nice lady  Ann wraps his whole head in Kerlix gauze so only his eyes, mouth, nose visible and says" Ok, he can sleep now".......right Lady....lay him on a bed of nails and let the band play.  So now the sleeping arrangement, Beth takes the other bed and Aunt Kim gets in bed with Gage facing the opposite direction so I can see the monitors and keep Gage from pulling all the stuff off his face and feet.  Gage does not have fine motor skills but he rubs with his fists over and over. He also likes to keep one leg out to sleep (like his Aunt Kim) so I made sure that happened. However, this bed did not want to cooperate....it was a pressure bed that made a noise and adjusted every time you moved weight. Imagine every time I lean up to keep Gage's hands off his face this groaning bed re adjusting the weight and trying to sleep. I was ready to rip the cord out of the wall.  Finally Ann came in and cut that off. Also, Gage decided that all night he would drop his oxygen levels (at one point below 60% in the 50's) and we are not supposed to wake him. Ann comes in and tells us that she called the MD and they may want us to go to ER. Then we change several tubings/monitor leads.  My little sugar plum does great he is trying to sleep.  At one point I am staring into the dark and realize that it is probably cold enough for me to spit ice cubes so of course I climb out over the rail into the chair and Ann sees me on the camera and she comes in later and said that it scared her a little but she figured it was OK because I was a nurse. But I had to wrap Gage up and Beth was in a fetal position so I went to get more blankets.  Aunt Kim walked all over Duke 2-5floors like I owned the joint and I also identified some HIPAA violations but that is for another day. At one point I am in my warm up pants and glasses and I KNOW my hair is looking great b/c it is about 4-430am and we are surely headed to the ER and I need Diet Coke and I see a security guard in the elevator and he doesn't say a word. I am having a deja vu moment from Pitt Hospital. Anyway we end up in the ER b/c Gage has apnea, and as we are coming into the ER there are medal detectors for people and your things. What has this world become???? Anyway, we have so much stuff Aunt Kim's backpack has to be stuffed by the guard thru the machine. Poor Gage was shoved thru first waiting on the rest of us.  We get in the ER and they tell us we are being admitted but the beds are really full. Aunt Kim says as long as it is not the 7th floor it is OK, and then things screech to a halt.  The MD comes back and they decide to let us leave, and they will read the entire study-and call us on the way home if he has greater than 10%apnea during the study and which ever hospital we are nearer to we will go to-PCMH or DUKE.  OR  They will call and oxygen may delivered to the house, but we know Gage's tonsils have to come out sooner than expected.  Well, the MD called and he was borderline on the 10%apnea so they discussed with Dr Strope pulmonolgist in Greenville and decided to speed up taking his tonsils out. We see the ENT at Duke on 8-20 I suppose for pre op I am not for sure, but at least to discuss options. And then after the tonsils removed, a repeat sleep study to see if that was the only reason for apnea. It was an emotional time sitting there watching Gage's monitors and knowing he was not breathing and not waking him up. Actually one time I could not take it and I did, but that was about 515 or so and the test was almost over.  I laid there at night staring at my little man and all he was hooked up to and again questioned why.  And in the same breath as why I am begging for grace and mercy and healing.  I only want Gage to be comfortable. I only want Gage not to suffer or struggle and have the best this life can give him and we can give him.  He would throw his arm or leg over mine as he slept and I would smile because he loves his Aunt Kim. I am blessed beyond belief I tell you. Gage has endured things in his life that a lot of us as adults would whine and moan about.  I love Gage and all my nephews and nieces with all my heart. Ever since the first day Gage was born we knew our family would never be the same.  We just did not know how much.  You never know until you are tested how you will respond-will you handle the situation; will you freak out; what will you do; who will help? If we could all know "The story or ending of our entire lives" would we want too? I think the Lord saves us from that, and gives us hours and minutes to handle it a little at a time because we are human and couldn't handle the entire story at one time. If we knew, we wouldn't take another step forward but would stay stationary dreading certain things, rushing other things, so the Lord gives us moments-minutes in time to handle and deal with and he is there with us thru the good and bad.  We draw closer, and we are call out to him more during the bad times but he is there during the good times too never leaving us.  When I don't feel God close to me it is because I have stepped away from him.  So everyday is but a small piece or moment in my life story, and it is what the Lord thinks I can handle right now and when I cant handle it I have true friends and family that lift me up and are there for me.  It is easy to get frustrated, angry, worried and lost in this life. But I can tell you that every single one of my family brings something different to help with Gage.  The most difficult thing for all of us, including myself, is realizing the limitations of others and not condemning them for those limitations but lifting up the good things they can do. We are quick to point out the thorns in others eyes, but we overlook the planks in our own eyes.  I have also tried (and I am not always successful) to try and not say something I know is meant only to hurt others.  It is such a fine line sometimes when you are in the stressful situation (and there are so many families like us and in worse situations than us) where you get frustrated at the doctors, other family members and yes even the Lord himself. I know some of you just gasped. I do get frustrated at the Lord, and I cry out "Why", and I question him, and I bargain, and I beg, and I plead, and I lay my soul bare; if he would only help..........but then something happens and Gage gets a good day or I see a beautiful sunrise and I know that Lord hasn't left me.  Beth and ML have had to do things-medically, physically, emotionally that seem impossible to handle, and will continue to face the seemingly insurmountable issues regarding Gage's care and caring for Taylor, Cody and Ryan while trying to live life.  As hard as it has been for Aunt Kim, it is no where near the emotional roller coaster that never ends for them.  But do not pity, do not shed tears, because to do so would be to discount the wonderful times and special times and blessings. And THAT is unacceptable. I want people to realize that this email that I write is my perspective, Aunt Kim's, my feelings, and it is my cowards way out at work where I can tell about Gage's visits/struggles one time in one email to my friends and co workers and not cry all day.  I think that Beth, ML, Taylor, Cody, and Ryan have all made huge adjustments in their lives. Gage has made things better in some respect, and yes more difficult in other respects. But NONE of us would change our lives. Gage is our family and our life. Any person who has a child that requires extra care like Gage brings his own type of joys to the mix of a family.  I do not think one of us would say it has been easy, especially for Beth and ML, but we were given Gage as a gift from God and what we do with this gift is our purpose in this life.  We have to listen for God's directions and instructions. So please continue to keep Gage, Beth and ML and their family in your prayers; and I ask a special prayer for the rest of our family who are trying to live in a way pleasing to the Lord, honoring our Mothers and Fathers, and respecting and loving each other and our friends and families for all they have done for Gage behind the scenes on a daily basis.  We appreciate all the love and prayers sent our way and continue to need them. I will try to keep you updated on the tonsil situation and feel sure we will not be on the 7th floor at Duke or maybe we will who knows...maybe their feeling lucky. 
*BETH*