So we're home from Cincy...for a minute. We had our appointment with the doctor on Wednesday morning and into the afternoon which was great. We were given all kinds of information about tumors, malformations, hemagiomas and more, and she was poked and prodded by a half dozen people. That said, we KNOW less than we did before about Aida's condition. We returned for infusions Thursday and more conversations with doctors - including the team surgeon as she'll be having a real deal biopsy on Tuesday morning. She previously only had a punch biopsy, and it turns out, the results were not exactly definitive. I believe the report said "some evidence of..." or something like that. We are hoping to have a real diagnosis - if one exists - by the end of next week so that new treatments can begin. We've been told it may take 4-5 weeks to determine if new therapies are working, and that feels like a very long time for a baby so unwell.
It is encouraging to know that the team we're dealing with now does this kind of thing all the time - sort of. It appears that many of the lesions don't fit any textbook descriptions - or even anything they've seen before, it seems. Some do, but they would not be causing the problems she's having. They're just bonus. :) Still, the radiologist, pathologist, surgeon and on and on are familiar with this area of vascular whatever-it-is. To date, we've not seen any of the imaging of all the mess inside, but this doctor wants us to. THAT is scary. I wanted to keep it all in a box or something so in 10 years we could look back, show Aida and appreciate it all. We shall see.
We were given the option to come home - and to Vandy today - or hang there and be admitted early. We opted to come home to regroup before a long week - partly inpatient, partly outpatient. The doctor is very "concerned"...a medical term that I've come to believe means "not in imminent danger, but really not good at all," so she's taking very good care of us. We will most likely return on Sunday night since it seems her numbers are good enough to hold through the weekend. She will definitely be admitted on Monday for some pre-surgery (biopsy) stuff, but the doctor will admit her whenever we want to come. We're not exactly sure of our plan - whether Mark will go the whole week or only part and how I'll get there if by myself. So basically, we are in good hands, starting over in some ways, and in for some more "adventure." Aida has been feeling pretty well lately, so that makes life in general more fun. What a blessing!
The doctors and nurses keep telling us what a great job we're doing and that we seem to have it together and things like that. And the truth is, even though I don't always get a shower, and I have the occasional, good, cleansing cry, I feel like we sort of do have it "together" (whatever that means) much of the time. It would be inexplicable except we know that so many people that we do and don't know - I like to believe thousands - are praying for us all the time. I imagine with so many prayers and pray-ers, God is hearing from someone all day long. We know that those prayers are why we are able to deal as well as we are. Don't get me wrong. It is all very scary, and we are incredibly "concerned" :) but God's hand has been all over this from the start. In addition to countless prayers, we have been beyond blessed by family, friends, co-workers and near-strangers with encouragement, financial support, acts of service and more. It is all terribly humbling.
I know I don't even have to ask for continued prayers, so I'll just say this. Beyond the obvious - all things Aida - we would greatly appreciate prayers for wisdom in making decisions about short term things like how much of this week Mark can/should/needs to be in Cincy versus work...and long term things like what life is going to look like when my maternity leave ends in 4 weeks. Also, please pray about the things that every parent faces...maintaining a good relationship with each other, good communication, lack of sleep, etc...all the delightfully boring, normal stuff.
We love you all and will update soon
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