Emerson's Scoliosis Journey

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

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

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

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.   Thank you for the prayers and suppor

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 any air getting to it pretty much gu

 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 if anyone is wanting one.    

It's been over 3 weeks since Em's surgery.   We have just been relaxing at home.  Jenson and Addison have enjoyed having Mom, Dad, and Em home, even though they were very well taken care of when we weren't.  Jen still struggles with understanding that if one of us leaves the room, we won't be gone for a week.  "But, I'm going to miss you!"   Emerson is healing up well.  She has one spot on her back, where you can clearly see there is a rod/screw, that she says itches from time to time.  It worries us, but it doesn't hurt.  She still can't bend to pick things up.  Her neck has gotten stronger, though she still needs reminders sometimes.  Her arm has improved a bit.   She still wears out pretty easy.  Going outside when it's hot makes her tired so we haven't been out much.  She spends a lot of time in her recliner, drawing and coloring while watching movies.  She has been sleeping better and is completely off pain medications.  She can get in

Emerson is still doing well.  She struggles to hold her head up all the time and to move her left arm.  It has a small popping sound when she does.  Sleeping has been descent for the most part and she is able to take a pain medication every 6 hours instead of 4.  She is getting lots of help from her sisters and has been watching movies and coloring.   She is supposed to take it easy until her follow up on August 24th.  

It’s been a very busy, tiring, and emotional day, but Emerson is home and very happy to be with her sisters.

Em has still not been released.  Today is her 35th day here.  They are hoping for tomorrow morning.  She is slowly feeling better and mad they keep changing her "go home day." Her hemoglobin has finally started to go back up.  She has been stuck for blood draws 5 times in the last 3 days. She does good without oxygen all day but at night she still needs it.  Hopefully tonight is better. They have also decided to get her a soft neck brace for the ride home.

We aren't home.  Em slept well but oxygen is still needed from time to time.  We ended up having an extra xray today and they found that part of her left lung is collapsed.  They think it's just struggling to wake up because of the long surgery.  Her hemoglobin was also on the low end.  So we are staying at least another night to see if those both improve.  If they don't, she will be sent to Children's Hospital.  They were hopeful that wouldn't happen though. She also got her hair washed, did occupational therapy, physical therapy twice, xray/photographs, removed her drains and bandages, gave blood again, had a popcorn/ movie party, breathing exercises every 2 hours, and walking as much as possible. Spa Day OT took pictures of her and Kenna to use as the new directions for other future halo kids.  She was excited to see the finished directions. Having trouble keeping her head straight. Movie/Popcorn Party This breaks my heart.  She is so

Em is struggling.  She had a terrible night last night and into the morning.  She is trying very hard to do what is asked of her even when she doesn't want to.  She made it 3 laps in the hallway without screaming the whole time which is a big improvement. Our main issues right now are the pain management and we haven't been able to get her off oxygen. The nurses are trying hard to get her where she can go home tomorrow but she has a ways to go.  Hopefully the rest of tonight and tomorrow show improvements.

Today was hard but she is still doing amazing.   She has walked once, sat in the wheelchair for awhile, had an xray, ate some goldfish and graham crackers, and taken all medications as a pill. She is struggling with pain between medications, trying to get comfy, getting off oxygen, and circulation which they say is because of blood loss and long anesthesia.  Dr. Luhmann came to check on her and reassured her that tomorrow would be better. After her walk and xray she was wiped out and has been attempting to rest ever since. 

This is far from easy but our brave little one is doing great.  She has breathing exercises and is rotated every 2 hours throughout the night.  They are checking her limb strength and she has a nurse all to herself. Tomorrow she will get up to walk. 

Emerson went in for surgery at 8:30.  They have everything hooked up and are starting the actual surgery now. 9:30 update:  everything is hooked up and they will start actual surgery 11:30 update:  Everything is going well.  Her vitals are good and she has had minimal blood loss so far. 1:30 update:  All is going well.  All screws are in.  3:30 update: They are finished.  She is being stitched up. 4:40 update: Halo is off and everything is complete.  He was only able to remove one hemivertebra and insert the shilla rods.  He ran out of time.  At least two thirds of her spine has deformities which makes it more difficult to place the screws.  She lost 30% of her blood but they were able to give hers back to her instead of donor blood.  She is wiggling all limbs and vitals are good.  He doesn't want to set a date for another surgery but will watch closely to see what will need addressed next. 5:15 update:  We were both allowed to come back into recovery. 

The doctor didn't really have good news. She has more problematic areas than were showing in xrays but showed up on ct and MRI.  Tomorrow he is taking out 2 hemivertebrae (partially formed vertebrae) and she may have to have another surgery in 6 months to remove a bar.  He can't do all 3 in one surgery.  There are 2 or 3 other slight problems as well.  This surgery will take 6 hours.  He did say he is confident this plan will help straighten her spine now and give her the best opportunity for some growth, but that it is very rare to have so many problematic areas.  Her new friend Kenna will also have surgery tomorrow at a different hospital.  While both are excited to get done and go home, they are very sad to be leaving each other.  Please say some prayers for Emerson, Kenna and their doctors. 

 Today we took the transfer van over to Children's Hospital for a ct scan and MRI.  Our brave girl did them both without anesthesia! We loved the baseball themed waiting room. Is it safe to travel with this attached to her head?   Dr. Luhmann will make a surgery plan and talk to us in the next couple of days. In addition to Emerson's awesome cards she has received some amazing packages and gifts.  We can definitely feel the love and enjoy seeing her face light up when there is mail for her. Some more fun... Bingo prize! Em crafted a hat for Mom Working on some return mail.

It's crazy that in a week, we will be preparing for a BIG surgery.  Please send prayers and get your green ready. Today they took blood and a swab to prepare for that.  She also did another pulmonary test.  Sometime this week we get radiographs and talk details about the surgery. Prize for giving blood We have been noticing her arm motion has improved. Emerson is very light on her feet and has to be reminded constantly to stop spinning and put her feet down. At first, I thought it was a mistake to make these because it made her miss everyone, but now she loves looking at them.   Some queens visited and the girls got to try on their crowns.

Unicorn hat and chain for countdown. Unicorn hat Emerson's hospital stay is halfway over!  She is really missing her family, but is in no pain and the doctors say everything is looking good.  She has learned to swallow a pill, which will be very helpful after her surgery. She continues to walk on the treadmill, stretch, do yoga, and eat to get stronger and healthier.  She does breathing exercises four times a day and her lungs continue to improve. She is still at the 16 pounds during the day and 8 at night. Surgery is still planned for July 21.  That will include removing the halo, removing one vertebrae and fusing two together as well as inserting new rods called shilla rods. She loves call her cards and packages! Here are some older photos that haven't been shared yet... Prayer service before the first surgery. Sticker Art Fireworks and popcorn More fireworks from bed.  This shows the bed traction too. Riley had surgery the same day by t