It’s been a fairly quiet week with slow, steady progress towards our goal. We hit a snag on our med wean yesterday & are in a holding pattern now, but I have confidence that we’ll soon be moving in the right direction again. Slow & steady wins the race with Eme!
The biggest event of the week came a bit unexpectedly today… In trying to formulate a plan to address on-going pain, I asked the team to order x-ray images of Eme’s spine. She’s been complaining of back pain for a while & was limping a bit with PT yesterday. My suspicion for anything obvious was low, but I felt it was best to ‘rule it out’ while we’re here.
Well, much to my surprise (& everyone else’s too I think) the x-ray showed 2 compression fractures in Emerson’s spine – L3 & L4. Wow. I’ve been passing off her pain as largely behavioral & I feel terrible about that. She has an incredibly high pain tolerance and has probably been in real pain for a while. Sigh…
Everyone responded swiftly today. We had consults from the pain (acute & chronic) team and surgery & a call to Palliative and ortho. They added another long-term medication to address the pain (on top of ones they already added this week) and she will be fitted for a custom brace tomorrow. The x-ray also showed significant demineralization of her spine & all suspect it, and the fractures, are a likely result of her chronic osteoporosis.
Along with the pain, this is bringing Emerson a lot of anxiety & the team is addressing that as well. In all, we’ll be going home with many new meds to add to her already very long list. Her temperament this admission has been mediocre at best. The new meds helped her take a nice, peaceful nap this afternoon, though, & for that I am so thankful.
We’re still hoping to be set free this weekend, but this new development adds some complexity to the admission. Everyone is working hard to get her what she needs quickly, though, so we can go home :).
Bradley is joining us Friday evening & we’ll rent a car and drive back all together just as soon as we can. I have some holiday things planned for us here in Omaha & am very much looking forward to his company! It will be a nice distraction from long, repetitive days in the PICU.
In other news, I’ve been doing a lot of online holiday shopping to pass the time & am afraid the kids will be overloaded with Christmas joy this year – lucky them! And if I get to watch them open it all, no matter where we physically are (home hopefully, but anywhere we are all together will do)… lucky me!
Thanks for checking in!
Hope for Emerson 
Love her face in this pix.. God bless you all!!!
Thanks for taking the time to update. My love and prayers continue for Emerson, you and your family. Praying for a release to home for Christmas together with your family!
Merry Christmas and Love!
Cindy
Love and encouragement to you Erika. Thank you again for the update. As you know by now, I’m a big believer in prayers and now I know more specifically what to pray for. Of course prayers go out to you all with wishes for a joyous Christmas all together.
Anne Dennon
Hoping and praying that you will be able to go home.
Thanks for the update. Oh my, 2 compression fractures…poor thing. But at least now she can be helped, as I am confident they can relieve her of much of that pain. So diligent of you to ask for an x-ray! Thank goodness! As everyone is, I am hopeful you will be at your home for Christmas. Obviously, the most important thing is to be together….wherever that is. Glad Bradley is coming for the weekend….it will add some fun to your days! Oh, thanks for the photo of that beautiful young lady!
MERRY, MERRY CHRISTMAS, Erika and Eme…and everyone!
Oh my gosh Erika, I know you were thinking ” here we go again, another Christmas spent in the hospital”. Obviously not your plan but you always deal with every set back with such grace and optimism. I’ll be praying you all get home in time for Christmas and that Emerson and the boys will truly enjoy this family time together…..wherever it ends up being. God Bless you all!
Thank you so much for the update. Praying that you all can be together for Christmas. Continue to listen to your mommy instincts. I’m so glad the x-ray showed what was wrong so Eme can be helped. May you and your family feel the love of our new born Savior this Christmas.
I hope you can all be together for Christmas. Hopefully Emerson will be feeling much better. Merry Christmas and a Happy and healthy new year!
I hate your sweet doll is dealing with all this. Compression fractures are awful for anyone – much less a precious girl like Eme. Praying that they will get things so that she is more comfortable. I’m hoping this improves her mood a little. I can’t imagine being a child her age going through All this (OR the mama that has to hold her hand going through all this AND “raise” her at the same time. It’s so much harder to dear limits and teach good behavior when you know they don’t feel well and that this often the root cause of behaviors you’d rather not see. I’m an adult and hate hospitals. I don’t know HOW you do all that you do. My hat is truly off to you! I DO think consulting palliative care is the right thing. Our healthcare system as a whole needs to work on integrating palliative care measures throughout medicine and getting specialists on board early for patients with cancer, muscular dystrophy, severe CP (when the kids are having lots of complications and pain). I was a hospice nurse and it’s true that many patients (especially kids) get stronger and do better generally when pain and other symptoms aren’t overpowering them. We had several kids stay with chronic non-cancer conditions remain on our service a very long time. With palliative care, there is no need for the person to have a prognosis of 6 months or less. They simply need to have a serious condition that can benefit from special attention to management of symptoms. If you have heard of the country group Joey and Rory, you might have heard Joey has cancer and is in the final stages. It’s nothing like Eme of course but it’s an example of someone having a better quality of life when their pain is aggressively managed. They really thought she was at the very end several times when she first got on hospice in late October, but she has been more alert and able to get out of bed some recently now that her pain is better controlled, This was at least a week after they thought she had been able to walk for the last time. Rory’s blog has talked a lot about the hospice care she has received….. It’s called “This Life I Live” and the link is http://thislifeilive.com Palliative care may give you access to a lot of resources you don’t currently have at home – especially if a local hospice program has a palliative care program.