Let's see, Sunday night I sent Trent back to the Ronald McDonald House to get a full night's sleep with the plan that he would relieve me in the morning. Well at 5:00 I get the news that we are moving from the ICU to the PCU and oh yes your husband called and he has pink eye so he can't come back until he has been on antibiotics for 24 hours. I think my response was something like, "Are you kidding me? Pink eye? When was the last time a grown man got pink eye?"
So back to Monday, Maggie started having increased hallucinations. They performed an EEG and discovered seizure activity in her occipital lobe. We aren't sure why but a change in her meds has helped with those.
Monday afternoon she started complaining of left arm pain and by night time was really hard to console. I noticed her oxygen sats were dropping into levels that I had never seen them before. That activity and discomfort continued into today. They performed an ultrasound and discovered a clot in her arm. At first it was reported as deep and then as more superficial.
This is significant for many reasons. Her onset of symptoms 3 1/2 weeks ago was left arm pain and now it was back. We had ruled out clotting disorders after both areas of her brain had grown the same strep bacteria and the clotting tests came back negative so why a clot again? And what is up with her oxygen sats?
Most of the day was a meeting of the minds. We were thankful for one MD who really stood up and took charge. He reminded me of Gru from Despicable Me. I kept waiting for him to finish his sentence with "mom I made a prototype of a rocket out of macaroni". If you haven't seen the movie, you should and then you would know what our doc sounded like. He was great and went to bat for us with all of the other teams who were disagreeing on the best treatment.
They performed a CT of her head and chest and reported no pulmonary embolism, the areas of her brain are either unchanged or just a little bigger, and nothing on her occipital lobe to explain the seizures there. This landed us back in ICU to begin a low dose of Heparin.
Here are ways you can pray:
1. That the Heparin would address any clots but not cause bleeding.
2. That she would have relief from her pain and get some sleep.
3. That the areas on her brain would really begin to heal.
4. That God would show Himself to us in ways that we can't miss. That He would combat the lies of the enemy in our heads and bring peace to our souls.
5. That my other kids would be fine and continue to have fun where they are. Jack is with a friend and the wonder twins are living it up with my sister.
Once again, thank you for loving my girl. I am off now to let a baby sleep and enjoy take out pizza in the ICU kitchen with my (recovered from pink eye- thank heavens) husband (who gets the night shift tonight- Amen). :)
6 comments:
God bless your beautiful family and give them peace and stability in every way. Chin up, mama!
My son was at TCH for a couple months last fall. Dr. Jea and Dr. Whitehead were his doctors. They are incredible! You are in a great place to solve sweet baby girls problems. We are praying for you!
You are being prayed all over the world I am sure. I had already told my car poolers to pray for Maggie. Monday a friend in their church ask her SS class to pray for Maggie!
JOYce
God bless you all
and prayers from C. Fife
I am praying today that God hears your requests, and especially that He shows Himself to you in a mighty way, that you have NO DOUBT He is with you at this time!! God Bless you all!
I gave up my FB for 99 days and the ONLY thing I miss is checking in on sweet Maggie girl!! Praying for you!!! {{hugs}}
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