We arrived back home about 10:30 yesterday evening. Emma was fine all day yesterday, so there was no reason to keep her in the hospital. It took them awhile to actually get her discharged because they had some communication issues, so Mom and I sort of sat around all day waiting. Here is the information I got yesterday, though it really isn’t much.
Pulmonology didn’t want to discharge her right away because they wanted cardiology to do another heart cath. After seeing her spell they still felt like it was related to pulmonary hypertension (constriction of the pulmonary arteries). This could be checked with the heart cath. Cardiology responded by saying that they didn’t want to submit Emma to more tests at this point because it wouldn’t help them fix the problem since they have already decided that she is not a good candidate for surgical correction at this point. If I understand correctly, they will wait to see if Emma grows out of her spells, if not, when she is bigger they may be able to look at some surgical correction at that point. So, our job is to just keep getting her to grow.
Unfortunately I didn’t get all my questions answered and I came away with even more questions. But I think the whole visit was to the best, as they will all continue to take Emma’s problems seriously and I don’t think they have totally given up on looking for some more answers. I will be making some phone calls today to make sure that they are following up on everything that I want them to and that we are all on the same page. We may still get some more ansers from neurology, I don’t know. One thing I definitely want answered from neurology is whether or not her spells are harming her in any way. If they are then I will want to be more aggressive about finding a quicker solution. If not, then I will be more content to just concentrate on Emma’s growth and development and hope things get better as those two things continure to improve.
Some prayer requests that we have: Pray that Emma will continue to develop. Pray that we will get the therapy started soon. Pray that her spells will become fewer and farther between and that none will be bad enough for ER visits or hospitalization. Pray that we will have faith and that the doctors will have wisdom. Also pray for the doctors as they are really frustrated and I want them to feel the peace of God in this even though I want them to continue to look for solutions.