Emerson's Scoliosis Journey

Emerson's appointments went well on Tuesday.   Dr. Luhmann (Spine) Her x-rays looked good and he is pleased that the bottom of the right rod has stayed the same and is not poking out anymore.  He wants to wait as long as possible before addressing the other vertebrae that need removed/fused and the shoulder.  We are supposed to watch the pokey rod closely and call if anything looks wrong.   Dr. Reich (Infectious Disease) No blood draw!  She has also completed 6 months of antibiotic. It is possible an infection will surface, though they don't think it will. While watching and waiting, we are supposed to keep her healthy, active, and continue to encourage weight gain. Prayers: No infections show up Bottom rod doesn't irritate skin Rods and screws stay put Weight gain No illness

When Emerson was in the hospital she received so much mail!  There were over 80 cards, many multiples from people that sent something every week (every day for Grandma Alma).  Mail was so exciting for her and uplifting for me.  We have received and sent some other important mail recently.    Poster We ordered this awesome poster from Higgy Bears.  It is full of pictures of other kids with scoliosis.  She is also on it! Donor Letter Sending a donor letter is hard and though it took me a while, we got one sent and hope it said the right things.   Dr. Luhmann Emerson emailed this to Dr. Luhmann recently and he decided to add it to his blog .   Her next appointment is April 27th.  She will meet with her infectious disease doctor and spine surgeon.  We hope to get good blood results and good x-rays.  We are still nervous about the rod poking her skin a little bit and plan to make a decision about that based on how they feel about possible infection and future surgeries.    

Fortunately, we are home and there isn't emergency surgery happening. Unfortunately, we had a long day and we have a big decision to make.  We were right that the right side rod is now poking her skin.  You can see it on the bottom right of this side view xray.  He was very pleased with the rest of the xray and said everything was holding well. He could easily fix it with a quick same day surgery but he feels like it is okay right now.  If it starts bruising or looking different then he would want to definitely do the surgery to bend the rod right away. If we don't catch it and it does poke through then that automatically means she goes through the wound vac, picc line, and antibiotics again.  Anytime the rods touch air they are very susceptible to infection.   As you can see she loves taking the antibiotics every morning and night.  Sometimes she chokes on it and she reminds us every time she takes it that she "hates her medicine." We still have the possibility that

 We have noticed a spot on Em's back that is concerning.   It looks like the rod on the right side may now be trying to poke through like the left one did. We sent pictures last week and Dr. Luhmann wants to see Em and get x-rays on Tuesday.  She is also due for a blood draw to make sure her antibiotics are keeping the infection away.   Please pray for safe travels, no infection lingering, and good x-rays.