It's 8:51 and it has been a long day. I get to sleep until 3:00 before my shift starts to I am going to stick to the facts here. Trent is with Maggie now and he has his hands full so our hope is to update everyone at the same time here.
There are 3 running theories for Maggie that they are trying to rule out:
1. She is creating clots from somewhere or because of a condition
2. She has vasculitis for some reason
3. Infection
Today's Findings:
Echo- there is no sign of clots on the echo. This is good and means that the clots are not coming from her heart.
MRI, MRA, MRV-
*There are no obvious signs of vasculitis but this is not the gold standard for this diagnosis.
*No visible clots
*Increased swelling around the original bleeds that are now displacing her brain
*The clot at her Thalamus that they originally thought was old (I didn't agree with this because we had zero symptoms) shows the biggest increase in swelling suggesting it is not old. Neuroradiology believes this may be an infection because of a band of color surrounding the spot. This was passed to Infectious Disease and they disagree.
Blood cultures- Aren't growing anything
Hematology- This is not all in yet but everything that has come back is negative so far.
Summary:
On the scans she is getting worse but no one knows why or how to prevent it. The interventions that are left are dangerous and no one feels she is stable enough to risk them. She is basically a ticking time bomb is what it feels like.
Clinical Presentation:
She is not moving her left arm and leg as much the last 2 days but this could be because of increased swelling and an arterial line in her left leg making it painful to do so. It could also be due to swelling in her brain.
She is speaking more and opening her eyes more regularly. Trent just texted me that she is even talking in her sleep right now.
She cannot see out of her right field of vision and will not track that way.
She is not as combative and I feel we are able to control some of her pain better with positioning and meds now and this is helping her overall state.
She is eating well and was even saying "more" tonight like she used to do.
How Are We?:
We are discouraged by the findings and lack of findings. We feel defeated this evening. We are scared.
At the same time, we are carried by an incredible out pouring of love from friends. Our nurse said today that she has never seen the kind of support that she has seen for our family. It's amazing. I walked into our hotel room tonight and dropped my stuff as I prepared to write this blog then I saw a precious birthday bag on the table with snacks for us and a present for Maggie. It gave me the energy I needed to get through this and that is a picture of how we are. Every time we feel discouraged, someone visits, messages, or sends something that carries us to the next mile marker.
Going to bed.
Thanks for praying.
About Me
- Ginny
- I am a pastor's wife, mother of 4 kids (2 adopted and 3 with special needs), physical therapist, and photography junky. This is where it all comes together for me. Feel free to join along as I process life out loud.
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7 comments:
I don't know you personally but I am praying for your little princess and the doctors taking care of her. God's peace be upon you.
Oh my friend, Ginny... Please know that we love you guys (and so does He) and that we're praying for you!!!
Continuo to pray for sweet baby girl!
We brought home our fourth complex CHD child from China last year, and she was at end stage single ventricle CHD. I understand the fear, uncertainty, and desperate desire to protect your child. As we spent six months in the hospital with her as she fought for her life before and after her heart transplant, we leaned on Him more than ever. He was faithful...giving us the strength and fortitude to endure all that occurred. I will pray for your strength during this journey with your daughter.
Continuing to pray for you guys and your precious daughter. Praying for wisdom, courage and peace.
Ginny,
About a year ago our family was also dealing with a medical mystery regarding our son. We struggled in a very similar way and I COMPLETELY understand the frustration and fear you are feeling. There is no escaping it, only going through it. May I share some things I learned through our journey?
1. You WILL get through it the way GOD intends for it to end. The destination is already set. There is nothing you can do to change God's plan, so rest in knowing He's in control. His peace is there to comfort you when you let go of the fear.
2. Trust your gut and listen to what it's telling you even if the doctor's disagree. If you believe God wants you to do something, do it. He's Maggie's physician. Follow His orders.
3. The "What if" game is a BAD game to play. You never win, so don't join in. Play the "I believe" game and SPEAK the TRUTH you believe to Maggie and for everyone to hear. Let Him share with you what He knows about Maggie.
Lastly, Life doesn't end regarding this event. It's only the beginning of the beginning. First page of War & Peace. You all have a LONG journey full of joys and blessings as well as additional struggles and heart aches. She has a beautiful life ahead of her and this is something God will use to bring about His will for her life. Why this way? Only He knows, but again, it's part of His plan, so rest that He's in control.
By the way, our son who was the medical mystery, is fine now after at least 7 stays in the hospital and 18+ ER visits. It was a year of Hell, but we made it. Don't ever won't to go through it again, but still, God never left us and proved His love all the time. Watch for the little miracles of Him showing you that He's there and in control. You'll miss them if you aren't careful.
God Bless & know people around the world are praying. He's got this & He's got all of you. Just rest.
Praying for grace, strength, healing.
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