9.30.21 In Murky Waters

Aimee is not doing well. There are several different issues and we aren’t sure how they are all related. One is very frequent back and stomach muscle spasms, possibly with seizures, possibly dystonia. Another is secretions being very challenging to manage ranging in extreme variableness from desert dry to a fountain. This is causing mucous plugs and many exhausting interventions. She is requiring near constant respiratory support through the bipap. She is still having low urine output and high ostomy output. She is also having more trouble with maintaining body temperature about 95 degrees.

Yesterday we met with her Neurodevelopmental doctor. He said that the autonomic system gets tired and wears out in complex kids like Aimee. Many of the issues she is having could possibly be explained by that theory. Disadvantage, there is nothing to be done about it. 

Following a conversation I had with her GI specialist on Tuesday, we had urine taken and blood cultures done yesterday evening to check for hydration status, ect. Trying to decide if there is anything more to be done from a GI standpoint to manage her secretion/hydration issues. We will be having a contrast study done as well to rule out any mechanical issues. 

Today I met with her Neurologist who wants to do a new EEG. She was suggesting an inpatient study so that we could do an extended picture and soon, but we argued for a simple outpatient one. Disadvantage is that they are a month out to schedule. 

This afternoon we met with the Palliative/Hospice team, called Carousel. We are going to increase her CBD much higher to see if dystonia is the root cause of all of this. We also had a long conversation with the Carousel nurse about considering a trach. Depending on how her labs look, depending on her response over this next week to increased CBD, if we can rule out an acute issue, we will consider going to pulmonary to discuss a trach. When it came up while we were inpatient, we told them that we just wanted to bring her home. We wanted to have her here for 2 months and then re-evaluate. We thought that home would heal her and bring her back to where she was. It hasn’t. I hate to admit that, but she is worse overall than she was when we left the hospital. She has had some good days, but overall, she has declined.

What we do next will not be an easy decision, but where we are currently is not okay. This is not manageable. Aimee is not living well currently. We do not want this to become an emergency situation, but instead would like to make a planned choice on what is best for her going forward. We are trying to find footing, to find a path that leads us to more happy times with Aimee. 

9.11.21 One Month at Home

Louisa, our little wild, strong, beautiful child, turned two at the end of August. 

And here we are, officially home for one month. Together.

 I have emptied our grab bag of food for the hospital. That’s when you know. We are here now learning to live a bit differently than before. This will be a disjointed post out of my mind and heart at present. I have attempted to write multiple times to you in the past couple of weeks. After all the support you have given us, an update is necessary. Yet, it is difficult as each day comes with different feelings and different ideas of how to move forward. 

The boys and I started our school year this past week. It feels good to have some normal and to be learning together again. It is really enjoyable to spend intentional, focused time together each day. 

We are starting an Around the World study that I am very excited about. Doesn’t hurt that we are beginning with a study of France. :) 

It is hard to know how to update on Aimee. We are continuing to increase her doses of imodium as she is continuing to need more to keep her ostomy output lowered, her urine output up, and her secretions thinned. She is needing more respiratory interventions, frequently requiring the use of the bipap even when awake and frequently needing extra measures to get her breathing. She has had a few amazing days where she has been awake more and most evenings she has at least one good hour. During her rehab appointment this week, we discovered that what we thought were muscle spasms following surgery, is actually dystonia. More meds to change. 

It has been hard to feel settled. Yet, we have certainly shifted our focus to home, to keeping Aimee home. We want her siblings to be around her. We want her to sleep in a place of peace. When her days on earth run out, I want her to be home, not in a frantic panic to grasp at life, but in a loving embrace. Turns out, that is how I want to go too. From one set of arms to an eternal embrace. 

Now, we are not preparing for end of life at the moment. Aimee is not on end of life care, but we are moving towards comfort care. Meaning we will accept less than normal ranges for her in favor of keeping her home. Less than normal hydration levels, less than normal respiratory function, less than normal energy. We will lean on the new palliative hospice team to help us keep her home, comfortable, and stable. They will come to evaluate her anytime around the clock and help us with tools that we need. They have given us training on more resuscitation techniques and helped us to make a plan for her increased use of pain and comfort medications. 

(Louisa resuscitating her doll with an ambu bag.)

For me, my heart and brain are in overdrive. Being home, being free, being aware all at once. In some ways this recent marathon has been a forced processing of our life. We have once again had to admit that our family is not typical and cannot do normal life. I don’t want to just hold on until it becomes normal. It won’t. It isn’t. 

Since Aimee was born, I have not been able to look forward very far. Sometimes just one day at a time, sometimes weeks or months, but really never beyond the year. Suddenly now, as I am examining our priorities for Aimee, I am examining mine as well. And I’m begin to have some stirring of dreams. I have begun to consider what I would like to do in this world and what I can do in the next few years towards those goals. 

To start with, we need to find balance, restoration, a new plateau. We need to sleep, to rest more somehow. This is foundational to every other piece of living well it seems. Yet Aimee’s medication times, alarms, and repositioning require us to get up throughout the night currently. Once that foundation is at least improved, we can build in the other goals: Nutrition. Spending time together, Ed and I. Sitting on the couch reading with the kids. Our family prayer time. Getting fresh air. Planting and growing. Cooking. Creating. Communicating with friends and family. Stretching. Exercise. Taking online classes. Looking out beyond the day. 

This all may seem a little comical coming out of this survival season, but to me it seems almost the perfect time to reset. To reprioritize. There will of course be challenge to this. We will definitely still be eating less than perfectly as we work on step one, finding sleep. But it feels good to dream, to hope, to have a plan despite knowing that everything could be shaken, stirred, and tossed back out with a hairpin curve of sickness or loss. It seems almost more important to savor the poetry of life when it is tenuous. There is a hope eternal in my heart. It grows many plants from its rich soil. Sometimes those plants must be given up, but I want to continue to plant seeds and to let those grow that God wills.