Emerson's Scoliosis Journey

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 m...

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:...

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 t...

Trying to make the best of the 4th. Em met her goal weight!  She is at 16 pounds of weights.  Thursday she had her weekly x-ray and photos and a pulmonary test.  As far as we know all is good. Talking to her sisters.  She sure misses them. Awesome color changing light in her room. We are still trying to get the bandage off.   Bulking up in Occupational Therapy.   Making slime in Recreational Therapy. Pulmonary Test No hands! Floating (eek!) They had a nice BBQ for the 4th