Oxygen. ..It's so great to have yet so inconvenient when you don't think you need it. There have been many times we've caught Lydia with her oxygen being used as glasses or a necklace and she's been happy as ever. There have also been some times that we failed to turn a knob or it has come detatched from a tank and she has been fine then as well. This must mean that she's healthy and can manage without extra oxygen. We'll see what the doctor says Monday.
Lydia is also supposed to be on an apnea monitor full time. She does not have apnea but it is standard procedure to have a monitor with oxygen. It tells us if her heart rate or breathing rate goes too high or low. It sets off an extremely loud siren when that happens or whenever the belt moves on her. It went off presurgery a few times when she was home for a day but now she's great. Right now we see it as an extra two cords and something that needs to be hauled around on my shoulder during the day. Needless to say we don't always use it as much as we are told to--rebels. It is absolutely wonderful to have at NIGHT--peace of mind. During the day, I'm either with her or checking on her often. However, I think the nurses and doctors would approve of our use of the equipment.
THIS MONDAY is her appointment with Special Care Clinic at Children's Mercy. They will run tests and labs to see if she can come off of her equipment. If she is able, they said that we can still have a tank of oxygen and the monitor for awhile in case we need it. Oh, I don't know what we'll do with all of the freedom. We can go from room to room and upstairs/downstairs with ease and we can say goodbye to the beautiful silver and green tanks all over our home. Can you tell I'm getting my hopes up? I just can't see any reason she couldn't come off of it. Praise God for her recovery! Forgive my complaining. I do have some level of guilt for complaining about this. My goals and perspective has shifted so much--life/death matters to convenience. Oh well. At least this blog helped me vent. Please pray that she (we) can be free on Monday!
Lydia is also supposed to be on an apnea monitor full time. She does not have apnea but it is standard procedure to have a monitor with oxygen. It tells us if her heart rate or breathing rate goes too high or low. It sets off an extremely loud siren when that happens or whenever the belt moves on her. It went off presurgery a few times when she was home for a day but now she's great. Right now we see it as an extra two cords and something that needs to be hauled around on my shoulder during the day. Needless to say we don't always use it as much as we are told to--rebels. It is absolutely wonderful to have at NIGHT--peace of mind. During the day, I'm either with her or checking on her often. However, I think the nurses and doctors would approve of our use of the equipment.
THIS MONDAY is her appointment with Special Care Clinic at Children's Mercy. They will run tests and labs to see if she can come off of her equipment. If she is able, they said that we can still have a tank of oxygen and the monitor for awhile in case we need it. Oh, I don't know what we'll do with all of the freedom. We can go from room to room and upstairs/downstairs with ease and we can say goodbye to the beautiful silver and green tanks all over our home. Can you tell I'm getting my hopes up? I just can't see any reason she couldn't come off of it. Praise God for her recovery! Forgive my complaining. I do have some level of guilt for complaining about this. My goals and perspective has shifted so much--life/death matters to convenience. Oh well. At least this blog helped me vent. Please pray that she (we) can be free on Monday!
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