Carter was very patient with all of my questions and answered everything. I am a very visual person, and I found myself wishing there was something equivalent to a museum exhibit or book with all of the tools and info pertaining to Liesl's various procedures. It would have a glass case with "artifacts", which would include the tools, scopes, drains, machines, etc with small descriptions. There would be a large wall or something with an oversize photo of a doctor and patient with text on the side detailing some procedure or process. There would be different mini-exhibits for other medical procedures, and it would be organized similar to the floors at Childrens-- respiratory problems in one area, blood disorders in another, etc. As it stands, google images has been my only venue to search for visual aids, and I would not recommend it in this case.
Key info from Q and A with Carter:
- Liesl has to wait 8 weeks between rounds of sclerotherapy because the antibiotics injected into the cysts are so strong.
- right now it looks like they will do 2 more rounds of sclerotherapy and then reevaluate things, which will probably be towards the end of August.
- the best analogy Carter and I could come up with for the cysts is that they are like balloons... the sclerotherapy deflates them, but the balloon itself is still there. Liesl will need surgery somewhere down the road so that the doctors can remove the "balloons" and clean everything up on the inside.
- normally this surgery is a 1-night stay in the hospital, but because Liesl has a critical airway, we don't know if hers will have to be longer.
- the cyst behind her trachea cannot be reached surgically, so the goal is to make it shrink as much as possible and not let it grow or re-inflate.
- Liesl will have MRIs to see how everything is going and to check if any cysts have moved. Yes, they can move.
- The doctors don't think she ever stopped breathing before since she was unable to resuscitate herself, so we are all VERY thankful it happened while both parents were around, not while she was sleeping.
- She wears a monitor at night that goes off if her numbers go above or below a certain point.
- The doctors have to keep an extra careful watch on Liesl for infection, but otherwise she is back to being a normal baby!
While at the pool, being a happy baby and smiling in her sleep.
Loving her Mom.