Since we have been here, they have taken blood cultures, urine analyses, done an EEG, MRI, and sent off for more genetics testing and metabolic panels. A lot of this is re-testing, but for their own satisfaction, they want to see newer results. We have an entire neurological TEAM working on our case. TX Children’s is a teaching hospital, so we have pediatricians, resident assistants, and fellows all seeking further accreditation in neurology working as a team on Braden’s case – not to mention a renowned neurologist.
Braden has suffered a few side affects from his seizure medicines, and his stint in the hospital. The ACTH has made him hypertensive (high blood pressure), and the sedation keeping him still has caused some puffiness & swelling – making him look like a little Michelen Tire baby. So they are giving him some counteractive medication, and a nutritionist is reviewing his caloric intake and it may have to be adjusted some. They are trying a higher dose of ACTH, and if they see no further improvement in his seizure activity, we will stop that therapy soon. They have decided to take him off the topimax, as it has given our poor baby renal (kidney) stones and calcium deposits. They are putting him on a replacement drug that will be less harsh on that system, as he has good blood flow to the kidney area, meaning there is no other cause for the high blood pressure. The medicine they are giving for the swelling should also lower his blood pressure.
Tonight we are having Braden baptized by a local Lutheran Pastor… so if you want to pray with us and be there in spirit, we are doing it at 8:30 pm. Please keep praying for Braden’s recovery, and know that he is in the best place possible. As many of you have asked how you can specifically help, we are working on a few ideas, and will try to post something in a day or two about how you can help from far away. We appreciate the offers to come be with us, but as this is a very stressful time, Brad and I are leaning on each other right now – and in a city we don’t know, it would put more stress on us to feel obliged to take care of anyone other than ourselves… but know that it means SO MUCH to us that some of you have offered, and that we may take you up on that at a later date.
Check back soon – we will update every few days as we can! Peace and love…
Kodi, Brad, & Braden
9 comments:
Hey Brad, Kodi, and Brayden
Just wanted to let yall know that we are thinking about you and praying for you. We love you and are here for anything. I am sure you are being swarmed with phone calls so I will call you when things settle down. Thank you for keeping us updated. We greatly appreciate it. We will be praying with all of you at 830 tonight. We love you.
I love you and we will have a prayer service of our own at 8:30 tonight. Take care of one another. Paxton says, " Bring Braden to me, I will take care of him while he is sick mommy."
We will also be praying for your little man (and his Mommy & Daddy) at 8:30pm. I am anxious to hear what we can do to help.
Love, Nicki
May God bless and keep each one of you! The 8:30 hour is nearly here and know that many will "gather" with you as Baby Braden is baptized...our love and prayers are with you. ~ Thank you for the update and allowing each of us the privilege of journeying with you, loving you through this time and supporting you from afar. We love you! Tonya
Braden,
We are with you in prayer as you are baptized. We are with you in prayer as you go through your tests. We are with you in prayer because we love you dearly.
Love,
Aunt Jeannie, Uncle Dave and you loving Merrill cousins.
dear kodi and brad, we will pick-up your mail and gene will take care of the yard and otherwise watchover the house while ya'll are gone. just take care of that little booger for us. i haven't had the chance to get to know ya'll yet. God is "a light on your path" and you just need to know that He is guiding your next step. Love, gene and kathy laurent
We are so happy that Braden is baptized now! We have been praying for all three of you and we hope that you can feel Gods love around you.
We love Yall,
Greg, Susie and Lil Miss
Dont feel bad if you cant write for a while, BE WITH YOUR SON. Spend some quality time with him and dont worry about everyone else. We just want you two to take care of yourselves and not worry about anyone else.
Amen to that!
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