Elizabeth is still doing well and making progress. She does really well with the passy muir valve. Her times on it have been extended, she started out at 30 mins 2 times a day, and is now up to 2 hours 2 times a day. When she is on the passy muir she is down to .2 liters of oxygen. YES that is .2, which is the least amount of oxygen she has EVER required. But when we put her back on the ventilator she still needs about .5-1 liter of oxygen. We will continue to extend her times on the passy muir valve, with a goal of 12 hours daily (maybe be mixed with trach collar). And she is still going on full ventilator support at night to let her rest. We are feeling better about things, before we were concerned that her progress was slow because the lungs were having problems. But as the doctors kept telling us, it looks like she just needs to get the strength to do all the work, and as she gets it we will be able to wean her more and more from the vent and hopefully lose it and the trach. But it will be a slow process.
Last week she had the upper GI to check the nissen fundoplication and decide if she needs surgery to redo it. We are still waiting for the surgeon to review it, and we will decide on something then.
Last week she was also seen by opthomology due to a concern with her vision. Her eyes dont seem to track very well. This could be caused by all the drugs she has been on, or it could be related to the neuronal migration disorder she has. Just to be sure there isnt something else going on she will have an MRI tomorrow morning of her head/brain. And then on Thursday she will have a hearing exam. Better to get all these tests done and out of the way while we are inpatient now instead of having to come back in for them later.
Elizabeth will also be having her 6 week post transplant bronchoscopy done either this week or most likely next week. The bronch is where they put a scope down her airway and check her lungs for infections and can get a good look at how things are. If all looks good on this one, she wont have another one until her 3 month post transplant exam towards the end of July. Once we meet with the surgeon and decide whether or not the nissen fundo needs to be redone and the MRI/hearing test/bronchoscpy are done we will start working on getting outta here!!
The "goal" is to be out of the hospital and in our apartment here in Houston by the end of the month. All depending on how the above tests go. We are hopeful, but we know how better than to get our hopes up too much. This road has not been easy, and we expect to keep hitting bumps along the way. After living in a hospital for 6 months, the idea of normal is a little overwhelming, and exciting at the same time! We are so thankful she is making progress and we are sooo happy to see her acting more and more like her old self. She has been smiling some, and has started sitting on her own (assisted by the boppy pillow).
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