Right now, I find myself at a stalemate with my doctors. I am fighting hard for the health and well being of these girls.
See, we had a treatment plan. And then we didn't. When I went to the doctor on Tuesday I learned that my platelet specific antibodies that were present are no longer being detected. And my doctors are now recommending no treatment at all!
On the surface this is great news, but the truth is that this blood test is not conclusive evidence that there really isn't a problem. And if there is a problem as I feel strongly in my gut and in my mind as a result of extensive medical journal research, the outcomes for "no treatment" are very serious for my girls. It is all very medically complex and even top doctors are perplexed by this condition so I won't get into the details of my research, but I feel strongly that there is a problem and treatment is necessary.
The last 48 hours have consisted of frequent correspondence with my current doctors, scheduling follow-up lab work, extensive research and reading of medical journals, networking with other NAIT moms, searching for a second opinion and scheduling those appointments (faxing record; calling & calling). It's been overwhelming and I feel like I am fighting for my babies lives while staring down a time clock until I am 20 weeks (next Tuesday) and need to start treatment.
I should hopefully have my first of three "second opinion" consults tomorrow. Please pray for wisdom and clarity for these doctors and my current doctors. Please pray for strength, peace and clarity for me as I walk this journey. I am seeking God's purpose in all of this "mess" but it can be really hard to decipher as I know God call us to trust in Him even when it the why and how are unclear.
See, we had a treatment plan. And then we didn't. When I went to the doctor on Tuesday I learned that my platelet specific antibodies that were present are no longer being detected. And my doctors are now recommending no treatment at all!
On the surface this is great news, but the truth is that this blood test is not conclusive evidence that there really isn't a problem. And if there is a problem as I feel strongly in my gut and in my mind as a result of extensive medical journal research, the outcomes for "no treatment" are very serious for my girls. It is all very medically complex and even top doctors are perplexed by this condition so I won't get into the details of my research, but I feel strongly that there is a problem and treatment is necessary.
The last 48 hours have consisted of frequent correspondence with my current doctors, scheduling follow-up lab work, extensive research and reading of medical journals, networking with other NAIT moms, searching for a second opinion and scheduling those appointments (faxing record; calling & calling). It's been overwhelming and I feel like I am fighting for my babies lives while staring down a time clock until I am 20 weeks (next Tuesday) and need to start treatment.
I should hopefully have my first of three "second opinion" consults tomorrow. Please pray for wisdom and clarity for these doctors and my current doctors. Please pray for strength, peace and clarity for me as I walk this journey. I am seeking God's purpose in all of this "mess" but it can be really hard to decipher as I know God call us to trust in Him even when it the why and how are unclear.
4 comments:
Prayers! Oh my goodness... I can't even imagine what it's like to know your children need something and your Dr being unwilling to give it! So many prayers for you, Lara!
Praying for your family and the doctors!
Prayers given and offered on your behalf as always. God continue to bless! Stay rooted in Him.
If you have to choose between doctors you'll not see much after birth and children you'll spend a significant part of your life with, choose the children. Even if it's not necessary but could be (because the test isn't conclusive) ... I tend to play it safe. Unless there is a detriment to the babies by doing the injections, too. I don't know much about the medical process you are talking about. But I like to play it safe and better to do the unnecessary rather than wish you had.
There are significant risks with IVIG including kidney liver and lung issues. Also most uses are off label (not FDA approved) so it is not as simple as just doing it if results are inconclusive. Hopefully they will find the right and best answer to keep all 3 of you safe .
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