4.23.23 Update

We are catching a breath over here as Aimee seems to be somewhat stabilizing for now in a new spot. A new normal maybe. She is staying fairly comfortable with the increase in pain medication. Her ostomy is still slow, but more like 50% of normal. There is pain and it is a bit of a different management strategy. She just does things her own way, doesn’t fit into a box, and this is further proof. For now, she is doing okay, so we are trying to relax the tension, take a deep breath, and continue swimming. 

P.S. While we are on this plateau, I wanted to give a quick reassurance to our close family members. While we have used the blog to conveniently communicate generally, when her time comes, we will not let you know that Aimee has passed away using this method. You will not open the blog to read that news until you have heard it personally from either us or from another close family member. 💛

4.18.23 Forward

We met with the palliative and hospice team yesterday. They were again so amazed that Aimee is coping with such pain as well as she is. The hospice nurse reminded us that in children the end is not usually a steady decline, it usually has steps down followed by improvement that doesn’t quite reach the previous high… over and over. This seems to be what we are seeing. 

At their advice, we increased her morphine doses and she has really woken up. Yesterday afternoon and today she is acting happy and present. Her intestines have woken up more, though not to a normal level. Apparently we need to be prepared to repeat this intense process over and over never knowing which decline will be the final one. These 2 weeks have been some of the most difficult days we have had in our lives thus far. Thank you for being with us in spirit through each one of your kindnesses, your prayers, and messages.

So, we are taking this one day at a time and trying to live life while also being prepared. It is a hard place to be. We have two plans in place for if things stay improved today or if they don’t… and so on for tomorrow. 

For now, there are these little gems moments to lock away in my heart. No matter what, I am so grateful for these treasures. 

4.14.23 Update

Quick update to say that Aimee is holding steady for now. We are not sure what will happen from here as her ostomy is still functioning very low, but with zofran and morphine she is awake a few hours each day and sometimes is interactive. She is somehow managing from this difficult place and it defies logic. We are meeting on Monday morning with hospice and palliative care. 

Louisa is trying to be more and more involved in her care. One of my great sadnesses last year when we thought she would pass away soon was that Louisa wouldn’t have any memories of her. It has been so sweet to have at least so many of my own memories of them together. 

4.10.23 Fighter

I must tell you about our girl Aimee. She is a fighter. She is adaptable, flexible, calm. She handles pain like no other, she rolls with the punches her body sends her. And we are on this ride with her as long as she wants to be. I am so, so honored that she wants to be here with us despite it all. 

Nothing much has changed positive or negative. Her intestines are still just barely functioning. A few hand squeezes, but she was mostly out if it today, so I started back some more pain medication tonight hoping that she will rest well and maybe be able to interact tomorrow. I talked with hospice and her GI specialist. Everyone is amazed at Aimee’s resilience.

We are on a bit of a plateau it seems. I will update when there is anything to share. For now, there isn’t much that we can do, except offer her comfort medications and extra fluids. We’ve already taken food and breathing out of the equation with the IV nutrition and the ventilator. Aimee gets to decide from here. This is her race and we have no idea how far she will decide to go. 

I am amazed at how well she has done on this path she has been given. She lives with joy and grace in an extremely difficult body with such a limitation on how much we can understand. I am beyond grateful to be her mom. We are so grateful she is in our family. Our girl. 

4.9.23 Improved

Aimee had an improved day today. We were able to give her a shower and do all of her dressing changes. Still very slow ostomy, still on anti-nausea meds and extra fluids, but she was less lethargic and we had some interactive moments even. She gave Elliot a couple of little smiles when he was holding her hand. We hid eggs for the other kids to find around the house and in her room. I love the precious interactions that are able to happen every day because we have her here at home. What a rollercoaster of emotions this week has been! 

We are meeting with the concurrent care/hospice nurse in the morning and will communicate with the GI specialist tomorrow too. Her plan got us through the weekend and some symptoms seem improved… yet the ostomy is still dangerously, threateningly slow. 

One day at a time. This one was good. 💛 

4.8.23 Update

No significant news today. Aimee’s ostomy is barely functioning, about 20% of her normal. She is lethargic and barely responsive. We have added some pain medication to help her rest more comfortably, which seems to be working some. The anti-nausea med is working well. One day at a time. SO grateful to be home, together. 

4.7.23 GI

I spoke with Aimee’s GI specialist this afternoon. She is concerned that Aimee is having intermittent volvulus (a volvulus is what led to her emergency bowel surgery in October 2021), which may or may not have been set off by the recent sedation. We have agreed together with her that we will treat Aimee over the next few days at home with added IV fluids, nausea medication around the clock, and decompression attempts, but not bring her in for more invasive measures. 

No matter what happens, we sure love our pure gold Aimee. 

I am so grateful for each hand squeeze. 

I hope she feels our love.