Emerson's Scoliosis Journey

Supergirl is home!  

They miraculously got everything organized and set up so we are headed home tomorrow.   Em feels good!  She graduated respiratory therapy, physical therapy, occupational therapy, and X-ray/photography.  Mom graduated picc line training and received a lot of supplies.   We are a bit nervous about doing everything correctly at home but are excited to get home.  Someone will come once a week for the picc line and we will go once a week to the wound center.  We are very thankful for social workers that work with insurance to organize all of that. Prayers that her PICC line stays clean and working properly, that the treatment prevents infection, for safe travels, and guidance for her doctors as we move forward.  Thank you! Check out her cute Minnie Mouse hospital gown

  Em is resting.  It was a long day!  The picc line is working.  She is getting antibiotic through it and they have taken blood twice.  First time showed a large drop on hemoglobin but they think that was a fluke.  They are coming to teach me how to care for the wound vac and picc line tomorrow.  There has been some conversation about possibly leaving tomorrow but that isn't from Dr. L so I am not sure I believe that.  Nothing was in cultures but they are skeptical because she was on an antibiotic.  Home health will come get blood for labs once a week once we are home so they can keep testing. The doctors haven't had a chance to discuss the plan together but tentatively she is on antibiotic through the picc line and she will start an oral antibiotic once she gets off another pain med. She is doing great with pain from the back surgery during the day but night is rough.  She just can't get comfortable and the pain meds wear off quickly. ...

Dr. Luhmann was pleased with surgery.  He removed the loose screw and placed a new one with a larger anchor, removed and replaced the rod with one that isn’t as bent, tightened all the screws because some were a little loose, and washed everything out.  Then they placed a wound vac.  They took cultures to guide the infectious disease doctors with treatment.   Today she got off the oxygen, walked 3 times, visited the recreational therapy area twice, and ate well. Tomorrow morning we go to Children’s Hospital to have a picc line inserted and then to meet with infectious disease to see what bacteria they found and what her antibiotic plan will be.  She will be on antibiotics at home for six months and have the wound vac for about two weeks.  They are hoping to get her home the first of next week. The social worker is working on setting up home health to help us with all of this.  They treat every open wound aggressively because bacteria loves metal and an...

 We had X-rays and met with Dr. L.  The bottom screw loosened at some point making the rod stick out more.  He is taking the rod out and replacing it with one not as bent, placing a wound vac, and possibly replacing the screw.  They are treating it like it's infected.  We might be here awhile.  She also cried when they took her, which she has never done.  She went in about 1:40 and we are expecting about a 3 hour surgery.  Please keep praying 💚

Emerson has been struggling a bit.  Three weeks ago, she accidently hit her back on a chair at school and the rod poked through her skin.  The local ER did x-rays and her doctor wanted us to keep it covered so it would heal and let them know if it changed at all.  She has taken it easy since then.   This week, the rod started pushing through her skin making another hole right about the first one.  The first one is also not healing up.  She is resting at home this week and is scheduled to have x-rays and be seen by Dr. Luhmann on Tuesday morning.  It is likely that they will do a surgery that day.  His tentative plan is to clean the rod and revise the hardware so it isn't pokey.   We could use some prayers for: Timely Covid test results Safe travels No infection Smooth surgery Quick recovery    If you have a shirt, bracelet or just green, to wear on Tuesday, Emerson loves seeing the support.  We do have some bracelets ...