Perspective

It is interesting how my perspective has changed since Jason and I have switched roles.  He has assumed the role, as you know, of Alli's primary caregiver these past few weeks and I have assumed the role of the primary care taker at the house.  When Alli and I have stayed in the hospital during previous visits it has been difficult, at times, for me to understand Jason's sense of urgency about getting Alli and me back home.  As the one that was deep in conversations with doctors, therapists, etc. I was well informed on the plan and details and had a clear vision of what our expected outcomes were.  I was living the ups and downs in person and trying to keep everyone focused on Alli recovering at her own pace so that we would hopefully all spend more time at home together when she was ready.  Now that the roles have reversed, I find myself anxious for Jason and Alli to be home with us.  I am not as involved in the details and daily conversations with doctors and therapists and am now beginning to appreciate the world more from Jason's former point of view.

I have been to visit Alli each of the last three days.  I am only able to stay an hour at a time because it is approx. a 30 minute drive each way and I need to be at the house to feed Josh (yes, eventually I will be able to pump, but that is not ideal right now).  So, my view of Alli is limited.  I don't have the benefit of seeing her ups and downs throughout the day.  I get her for however she is for that hour.  On Monday, it was the first time I had seen her since they took the bandages off of her head.  She has about 50 staples in the shape of a horse shoe from the center of her head to the back and around behind her ear.  It is painful to look at.  It makes me ache thinking about what that feels like and I am hopeful that the medication they are giving her for pain and sedation are doing their job, because she can't always tell us when she's uncomfortable.  On Tuesday when I visited her, from my perspective she looked uncomfortable.  She was moving a good bit, but to me her movements seemed reminiscent of her infantile spasms and I grew immediately concerned that we were/are headed back down the road of trying to get those under control.  Over the course of those same two days and the several days prior, Jason's perspective of Alli was much different.  He had seen her work with the PT and make more deliberate movements.  He sees her bright and alert with the doctors during morning rounds.  We are seeing different things and that, in and of itself, can cause issues.  Jason has the full picture of watching her not move for days at a time, relieved to see her moving her limbs independently.  I have the limited picture of wondering what I am seeing in the movements she is making.  It creates frustration because Jason's view and perspective is one of satisfaction and accomplishment, having seen the full picture.  My view and perspective is one of concern because I don't want to go back and revisit another relapse of spasms.  It doesn't ignore that she has made progress, but I am cautious about how hopeful I get about what I am seeing because I want her to be able to move beyond all of this and be able to grow and get stronger and develop.  That will be the key to keeping her from these situations in the future.  So, we are left to reconcile our views.  It can be difficult to agree that probably both of us are right in some respect.

Today was full of promising news.  Alli will have her GJ button placed by interventional radiology tomorrow at noon.  That means we will be able to remove the NJ tube from her nose (yeah!!).  Her new button will have a port that goes to her intestine and a port that goes to her stomach.  Her meds will be given via the port to her stomach, while her food will be fed directly in to the intestine.  This helps to minimize reflux and ensure she has appropriate absorption of her medicine.  She had another CT scan today and the swelling in her head is diminished to the point where the neurosurgeon feels comfortable reattaching the piece of her skull that was removed for surgery.  Therefore, he will reattach her piece of skull on Friday.  They felt this would be a good option for her as it will prevent her from having to be re-intubated for this procedure in the future.  It will also ensure that she doesn't need to be transferred back to Egleston for that procedure once she starts inpatient rehab at Scottish Rite.  So, assuming all goes well, Alli will have her procedure Friday and we'll hopefully be able to extubate her some time over the weekend.  Once she has been extubated she should be able to be transferred over to the inpatient rehab unit at Scottish Rite.

On another note - somewhat unrelated - tomorrow is World Down Syndrome Day (March 21 or 3/21).  The date was picked because of the association with the 3 copies of the 21st chromosome that are present in people with Down Syndrome (trisomy 21).  The day is meant to bring awareness to and celebrate this very special group of people.  So, if you don't mind, maybe say a little prayer for Alli and her buddies, and those that care for them.  Their journey is different from others, but no less enjoyable, and full of hope, strength, determination, and tremendous love.