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Antibiotic Graduation

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
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Mail

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.    

Appointment Update

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

Unscheduled Appointment

 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.   

Em's Update

Emerson has been going to school with her PICC line and getting 3 doses of antibiotics daily.   We have had a few issues: Her white blood cell count had dropped pretty low and they had to switch her meds One day her bandaging slid off and exposed the insertion site They couldn't get blood to come out for the blood draw (but it magically worked the next day) She had to go through taking the bandaging off every Monday so it could be refreshed   Otherwise it has gone pretty smooth. Then yesterday afternoon it wouldn't work. Her home health nurse, Denise worked very hard to get ahold of the doctors to see what they wanted to do, so we didn't have to visit an emergency room.  We were tentatively supposed to be done with the PICC line this week anyways and thankfully they said just take it out and ordered oral medication.  When she took it out it did have a hole in it and blood clots, which is why it wasn't working.   Em is happy to be finished with the PICC line, but we will

Three Appointments

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 likely 4.  Then he w

New Normal

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 couple kids and she really enjoys getting out of the