After another conference today with 3 of the pulmonologist and the Ear, Nose, Throat (ENT) doctor, Floor doctor and our nurses we have decided it will be in Elizabeth's best interest to get a tracheostomy. This has been the hardest decision for us to make just for the fear of the unknown with a trach and complications that can arise from the care of it. As well as how it may affect Elizabeth. I dont think anyone ever "wants" to have to make this decison but we also understand that this not the worst possible thing that could be happening so we need to be grateful for that. If we go home now with her oxygen requirement being as high as is it is without a way to ensure her airway is staying open there is a possiblity the next time we have to rush her to the hospital she may not make it. Thats a chance we are not willing to take. With the trach at least we will know that we tried everything we could to help her. Some people have asked how the trach will help, since we now know that Elizabeth has tracheomalcia (her floppy airway) which is caused by a vessel putting pressure on her airway, a trach will be able to hold her airway open, ensuring the oxygen her lungs need will get to them it will also relieve some of the pressures that the work of keeping her airway open is causing. So the hope is that with the trach her pulmonary hypertension may get a little bit better as well. We are hopeful that they can just hook oxygen up to the trach and she will be able to get it that way, but there is a possiblity she may need a ventilator to support her lungs and provide the oxygen for her. We will not know for sure until they get the trach in place.
So we know that the hope is her lung disease will get better as her lungs grow and they also think her trachomalcia will get better as she grows, so we are hoping that after a few years or less she will not need the trach or any form of help to breath, but it will take time and there are still unknown possiblities with Elizabeth, as she has already shown us you just never know with her!
We do not have a set date for the trach surgery, we are waiting for ENT to come by and let us know what day/time they have available to do the surgery. As far as we have been told she will have the surgery and will be kept sdeated/paralayzed for 3-4 days to give the trach site time to heal a little and keep her from pulling it out. She will be in ICU during this time. After that she can be moved to a regualr room and we will start learning how to care for her and the trach. We have to learn alot and show them that we are able to care for her before she will be discharged, they have told us that the stay after ICU is usually 10 days. So IF all goes well we will be here at least 2 -21/2 weeks after surgery. We will have to have some type of home health nursing care once we get home to help with Elizabeth since to ensure that her trach doesnt get plugged up or pulled out. From all that I have heard/read there is alot to caring for a trach but if it will help keep Elizabeth healthy we are more than willing to do it.
We TRULY appreciate everyone's generosity, encouragement and support.
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