Friday, October 23, 2020

Surprise

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


Thursday, October 22, 2020

Procedure Complete

 


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 support!  This road is a long one but we will get there  💚

Wednesday, October 21, 2020

Bump in the Road

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 guarantees there will be infection.  At the end of the six weeks if anything is still showing up in her labs they have to remove all hardware.  They are very hopeful we won’t have to do that.

Emerson is struggling with the emotional aspects of all of this.  She is very nervous about tomorrow.  We are really praying for good results and the perfect plan to get rid of and prevent any infection.  

Thank you for all the prayers 💚 Please keep them coming.

Tuesday, October 20, 2020

Surgery


 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 💚

Thursday, October 15, 2020

Likely Surgery

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.    

Saturday, August 15, 2020

Em Update

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 and out of her bed by herself.  She is also still receiving mail and absolutely loves it!

She is hoping to be able to start kindergarten this year.  

On another note, Jenson woke up sick today.  She is fighting a fever and headache and is very tired.  We don't go anywhere and don't have visitors.  Craig is the only one coming and going because of work.  He took her to the urgent care today, where they ruled out everything but "something viral."  So Jenson has been tested for Covid.  We really hope the "something viral" does not spread to her sister and would love some prayers for this situation.  

Thank you for showing us so much love through this stage of Em's journey.  We are truly thankful!