Halo

Oliver met with the ENT doctor today to go over Oliver's options about why he may be choking more often. It is a complicated condition to explain but I will do my best. We have talked a lot of Oliver dropping is oxygen saturation (D-sats). We have dealt with this for quite a while, it has become worse but we have the equipment to manage at home. He drops below 88 percent we give him high flow oxygen. The high flow doesn't work, we bag him until he is back up. We have actually had a great month. He had pneumonia at least once but we made it through fairly well. He has developed a chronic cough that is very bothersome to me because I feel that he is getting a bit weaker. The D-sats I just explained in Oli's case is Central Apnea. The part of the brain that controls breathing is just not maintaining the breathing process at all times. It is not uncommon in special kiddos. As Adina says, "Oli just forgot to breath a little bit." Now Oliver is showing signs of Obstructive Apnea as well. His throat looked okay today, but he is choking on his secretions. Up until a few weeks ago we probably would have said probably not to a trach. Over the weekend Oliver has had more difficulty with secretions and today he D-satted to 34 percent because he could not clear his throat. Feeling so helpless as your child is choking is the worst feeling in the world. I know if he had a trach I could suction him and make him comfortable. We are being held hostage by the phone. Waiting, always waiting for the doctors to call. I called Oli's doctor that is always very helpful at guiding us to make the right decision. We are hoping to go to Gillette Friday for a meeting to discuss all of the options. Oliver is awesome, he still laughs a lot. When he is laughing it is hard to think that he needs a trach. Then when we are relaxed and not expecting anything, he throws a mucous plug, drops his sats, and throws us for a loop. To explain the trach, he will have a little incision made in his neck with a little tube inserted. He will not breath through his nose and mouth but more through this tube. There are many different kinds of trachs. Oli would have the kind where some sound could still get around it so we would not completely lose his voice. Also, we could suction him much easier. Just because he has a trach does not mean he is stuck to a bed. We can still do all of the things that make Oli happy. It does not mean Oli is dying, I know some people think this. He just need a little more support. We have a lot of different feelings right now and are trying to do what is best for Oliver and our family. We feel safest in our own home lately. As soon as we step out the door, we put our walls up because we know that so many people have many different feelings about what we should do or that Oli is better off one way or another. Adina continues to be Oliver's little guard dog.

Oliver fell asleep after his appointment. John and I were naturally a bit down. Whenever news like this happens we re-grieve the whole situation. We went into Oliver's room and the sun was shining on top of his head like a little Halo. All night we listened to "Halo" by Beyonce! Tried to take a picture of the Halo. He is our little heaven sent angel that teaches us the true meaning of strength every single day.


Oli gets the giggles from the silliest things! Usually its Adina that figures out what makes him laugh.