My thoughts & feelings from yesterday persist, but today I’m choosing to focus on a positive. It’s nearly unheard of that a hospitalization doesn’t result in a life flight transfer to Omaha these days, and this time it did not. This hospital has taken the time to carefully consider all of Emerson’s past medical history as well as her current medical complications. They’ve talked extensively to transplant surgeons and the PICU team in Omaha, even communicating events as they happened in the middle of the night.
All in all, there have been a lot of positives in the past three weeks and, moving forward, I’m choosing to focus on at least one a day for the remainder of this admission. Mind you, it won’t magically erase my exhaustion or frustration; but that’s okay. Those feelings are real and justified. Sitting in a PICU with your daughter as she struggles to recover from septic shock is far from invigorating or fun.
Today I am very thankful for the psych team. It began as a consult to address psychosis coming off the vent, then blossomed into many lengthy discussions about Emerson’s mental status at baseline. She’s struggled for many years with violent behavioral outbursts as well as extreme perseveration. It can be difficult to believe just meeting Eme – she is very sweet, quiet, and well-mannered much of the time. When she launches into an outburst, though, a switch flips and that sweet little girl is nearly unrecognizable.
For years it was attributed to her spending too much time in a hospital & becoming accustomed to getting whatever she wanted whenever she wanted it. I’ve been given much parenting advice over the years – walk away from it, don’t give in, detach, yada yada… News flash – I have 2 older boys and this is not my first parenting rodeo; I know how to manage a temper tantrum! What’s more, I have very deliberately not treated Emerson differently when she’s sick. I have the same expectations for her behavior when she’s sitting in a PICU as I do for her when she’s sitting at home.
Mental health is one component of Emerson’s medical picture that has been largely unaddressed. Omaha is not a pediatric hospital and there is no pediatric psych team to consult when we’re there. That’s not to say anyone dismisses it, just that the resources haven’t been available.
The biggest blessing from the psych team this week? They discussed Emerson’s case at length, reviewed all her medical history, and concluded with certainty that her outbursts and perseveration are biologically driven (i.e., they’re not a result of past circumstances or parenting style). Can I get a Hallelujah?! Thank you. It’s not me. I always knew and now it’s medically documented for everyone else to know too! They think it may have happened in one of her cardiac codes, or it may simply be part of her underlying condition. The “why”, though, is less important than the “what” do we do about it.
They eliminated one med, replaced it with a different one, and are starting another new med tomorrow. They’re watching her closely and increasing doses as she tolerates it. The goal is to calm her, but not sedate her. We may not have time to reach the perfect cocktail of meds at the perfect doses for Eme this admission, but I’m so thankful for a team of doctors that is addressing this seriously, and I’m hopeful we’ll, at very least, be in a better spot when we leave. They’re reaching out to psych doctors in Omaha now to find us ongoing support for after discharge. All good and a definite something to be thankful for today!
I had a lengthy discussion with a PICU doctor this afternoon to lay out the plan for Emerson’s drug, fluid, and electrolyte weans. If all goes as planned, she should be buttoned back up and ready to discharge sometime next week. I’m not holding my breath, but I am certainly crossing my fingers. It can’t come soon enough.
Finally, my heartfelt appreciation for sharing your purposeful activities yesterday – I can’t tell you how much fun they were to read! I’m so touched that we’re able to impact others in such a meaningful way. It helps me to see the positive in this crazy journey we are on. Your homework now is to think of one specific thing you are thankful for today…
And one last positive from my day – I stepped outside this afternoon for the first time in three weeks! And with the help of two nurses, a giant IV pole, a big wheelchair, and a travel monitor… Eme came too 🙂
Hope for Emerson 
So thankful for your day out with Emerson!
LOVE that Eme got outside too! You’re doing great. I am thankful for my faith. There is a loving God in control of our lives (if we let Him) and I know His plan for Emerson and all of you is a perfect plan.
I am thankful that you are Eme’s mom, she is one lucky little girl! And I am reminded to be thankful for my own children- with all the chaos and crazinesss they bring, I wouldn’t have it any other way. This is our journey, this is our calling and we have answered. Love and blessings to you and your family❤️
Awesome..you made it outside…those hospital lights are enough to drive any crazy. YOU need to get out there daily…30 minutes or more will do you wonders. I promise, they will call you if there is any change with Emme. Go outside, your well being matters as well.
It’s the little things… like stepping outside with your child for some fresh air.
Gosh, we’ve been thinking of you. Thrilled to hear that psych is working to alleviate an issue that has fallen under the radar in the past. 💡
Fingers crossed that next week is the week you both get to go home.
As for something I am thankful for? Just one? That your daughter has been such a great friend to our son. She is a gem. 💙
Erika,
You and Emerson have been heavy on my heart and continually in my thoughts and prayers. I’m so glad to see your post….I know things are NOT easy, but I think that they are more bearable when we choose to have an attitude like you are doing! ☺
Yesterday these 2 scriptures were on my mind to share with you and now I think I will go ahead ….
“And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us”….Romans 5:2-5
“Be joyful in hope, patient in affliction, faithful in prayer.” Romans 12:12. God calls us to some hard stuff….its people like you who answer the call that inspire the rest of us to do so as well. 😉 Hugs
I hope both of you were able to step outside again today! I was so glad to read you were able to yesterday and positive both of you enjoyed it. I am also glad you seem to have more more confidence in where you are….and no life flight to Omaha! With the help of all, including the psych team making a good effort, we are all praying for Eme to be able to go home next week. That would be so good…and really something for which to be thankful! Prayers and hope….
Erika,
Just a note to let you know you’re on my mind and in my prayers. I hope this is the week you get to come home. I hope Emerson has made big strides since we heard from you last and that you and the doctors are feeling better about how she’s doing.