Forgetting How to Breathe

I took Luke to the pulmonolgist today, deep down I think I knew it was going to be a waste of time. I felt very stupid in the appointment because it had been mentioned before. In our big care conference a few weeks ago we briefly discussed Luke's cyanotic events. I have repeatedly found him completely BLUE from his fingernails, chest, lips- he looked like a smurf. However at the care conference we didn't disuss them too much because I hadn't seen them in awhile. Well they came back and are happening more frequent. Sometimes he just grows pale , very pale as if you could lie him in a coffin and he would look like he belonged there. That is my biggest fear. That one of these BLUE episodes could lead to just that. Although the doctors have told me before it was probably just a neurology thing that in that moment his brain was not telling him to breathe. I still paniced what if his heart was defective. what about his lungs. I never want them to test him, prick him, or torture him for any tests but I wanted them to tell me something, find something, that they could fix. Well just like everything else with him they have nothing. Nothing to tell me on why this is happening, if it will stop or anything I can do for him. It is apparently just a central apnea. I guess I shouldn't say just. Cause its bad , I keep thinking hes smarter than that. How can my baby boy not know to breathe. I know that it doesn't work like that and obviously in the part of the brain that isn't working correctly there must be damage to the part that tells the body to breathe. I knew in my heart that what I was seeing was not a seizure but really almost as scary. At least when he is seizing most of the time he does continue to breath even though it is shallow, he breathes. But for know I guess we do what we do about every new diagnosis added to the list, we hope and we pray that it will correct itself and he will be healed. But for now I will continue to panic and be more afraid for him when he is not with me.

Wedding Anniversary and G-Tubes

Tommorrow Steve and I will celebrate our 8th Wedding Anniversary. It's hard to believe that 17 years ago when we were both 17 we fell madly in love with each other. Many things have changed and yes our love for each other has changed too! 17 years ago I loved watching him take care of all of the special needs children I babysat for with the same compassion I had. I used to think what a great father he had. I remember thinking if he could help me with feeding tubes, adaptive equipment transferring in and out of wheelchairs than life with "typical" children would be a breeze. Well I guess God had different plans for us.
It has taken many years and mixed emotions for me to finally come closer to believing God gave me Steve to share in this life -together we could draw strength from one another as we care for our own special needs child. I think he knew it was my calling and Steve was not like most other - that he do could handle this very different life. Life is not like we pictured but together we will carry on for each other and all of our children! The last few months have been trying with Luke's sleep dysfunction, somedays only sleeping a few hours. The stress of it all is even more difficult when you get tired. Dealing with watching your child suffer is difficult enough but being so physically exhausted many nights could make anyone on edge. When I think about the way we have treated each other during those stressful times I get embarrassed. Of all the times in life when two people need each others support more and we would argue. The issue of the G-Tube has caused many arguments. I was completely against awhile ago and then I started to come around to thinking maybe it would help. Daddy has wanted nothing to do with it at all and made himself clear it wasn't an option unless it was medically necessary. The doctors thoughts were always different and although some thought it may help with some feeding, and sleep issues it was never presented as a medical necessity. That is until a few days ago after Luke's recent swallow study when they realized something was going wrong with his swallow function. The main issue with their findings was Luke feeling uncomfortable and him taking in volume at one sitting. So tomorrow on our 8th wedding anniversary Daddy and I will meet with the doctors to discuss the swallow function and play the tape for Daddy and explain its medical necessity. I know that tomorrow will be a difficult day for everyone as we will most likely schedule a surgery. I pray that tomorrow God will give us the strength that he has entrusted us to get through this difficult decision with little stress. I know when we leave the appointment and drop Luke off to Gramma we will we will have more to discuss. As we sit at dinner to celebrate our wedding anniversary and reflect on the last 8 years I hope and pray we can remember why we were chosen for this difficult job!