Emerson's Scoliosis Journey

Shoulder doctor: We haven't shared this with everyone, but in August at the follow up for the original surgery we found out Em's limited left arm motion is due to her shoulder blade being in the wrong spot. It will require surgery to improve the motion from about 45 degrees to hopefully 100 degrees.  They are hoping to do this surgery along with a future back surgery and it isn't time sensitive.  No new information today. Back doctor:  Wound vac tape removal was horrible.  Her back looks amazing and she graduated from the wound vac a week early.  She was released to take a shower/bath and go back to school. All great news! Next appointment is in April unless we notice anything alarming. Infectious disease doctor: She isn't having any reactions to the meds which is good.  She has a couple things in her blood labs that are low.  Hemoglobin was one of them.  He isn't concerned and wants to continue with the PICC line for at least 2 more weeks, most l...

We have been home for a little over a week and are starting to get used to our new normal.   We use Emerson's PICC line to give her meds at 7am, 3pm, and 11pm.  The trickiest part is having the meds set out for 1 hour prior to giving it.  We have lots of alarms set so we don't forget.  The home health lady comes on Monday's to switch out her bandages on the PICC line.  She also takes blood for labs when she comes. The wound vac is on all the time.  The dressing on it is changed on Tuesday's.  Last Tuesday she went to the Bothwell Wound Center to have that done.  The bandage covers her back and it is very painful to have it removed.  We are hoping to get rid of that next week.   Overall, Emerson feels great!  She hates the big antibiotic pills she has to take, and getting any bandage taken off, but she feels good.  When she isn't home with Mom or Dad, she has been going to daycare with Jenson where there is only a coup...

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 💚