7.12.23 Bones

Spending the day down at the hospital. We had a dexa scan to check her bone density and are currently in infusion clinic for for her zaledronic acid bone infusion. Wish all the areas of the hospital care were as supportive as this one. It is the only place we come that asks if we are getting the resources we need, if we need supplies, is completely accommodating, ect. This is the clinic we are technically supposed to come to weekly for weight, blood draws, and dressing changes. 
Even with how supportive they are, we were both so anxious bringing her here, difficulty sleeping, and flashbacks. Just keep breathing and get her back home where she belongs. 

The younger 4 kids and I are finishing up our school year this week. We did a modified schedule of 3 weeks on and 1 week off all year, which left us with another 3 week term during the summer. It was a wonderful schedule and we all voted unanimously to continue it next year. Looking forward to a long pause with hopefully lots of family time! Aimee is still almost entirely in her bed, but with the wonderful back access to the house and the new patio our world has opened back to the outdoors. We even got to sit outside and see the neighbors’ fireworks this year. I very much wish that Aimee was outside with us, but it has been life giving for the rest of us to be in the fresh air! 

6.16.23 Sweetness

We made it through a rough month full of sicknesses that went careening through the family, a respiratory bug and a horrid, long lived stomach one. We are finding our barring again. 

Aimee has been up and down with some pain, some grins, and a lot of sleeping. Her monthly bloodwork has been a bit goofy so more changes are being made to her TPN including another added medication. She is basically a super absorber through her central line. Her providers see her as an anomaly in many ways. Aimee likes to do things her own way. Despite being on “a whiff” of lipids only 3 days a week, her triglycerides and all fatty acids are extremely high. Her vitamin levels have also been tricky to keep right. There is also some indicators of stress on her organs showing. That one though is very much expected with longterm TPN use. 

Overall we are taking life about one week at a time currently. There is much sweetness here in the middle of all the hard. Last week we were able to enjoy individual time with each of the other 4 kids outside of Aimee’s room on the patio. Next week we start nature school. Much sweetness. 

5.8.23 Update

What a long month this has been! We were preparing as best we could for the end, but now here we are moving forward. Living in between relief and hyper-vigilant worry. We are picking back up all of the tasks we had laid aside as unimportant a few weeks ago. Supply orders, appointment scheduling, bloodwork, ultrasounds, equipment replacement, and x-rays. I barely care about keeping up with all of it now, but know we must. Because our loved girl is still here, all of the other is here too. 

Wednesday we had our monthly appointment with the GI doctor and nutritionist. We don’t really know for sure what happened with Aimee’s intestines, why they nearly stopped or how they have slowly improved every week since. The specialists can’t explain it either. I do know that I will have a hard time not associating it with the sedated scope. How could we ever agree to anything sedated again after such a small, short sedation seemed to cause such near calamity?! And yet part of our conversation Wednesday revolved around the central line having some bleeding/swelling again and the possibility of needing to replace it. Oh I pray that it does not come to that decision. How could we say yes and yet how could we say no? 

Aimee has been dealing with a pressure sore in midst of all of this due to her lethargy. She is getting sub-optimal nutrition currently because we are keeping her calorie intake super low, about 400 calories daily on average. She is finally losing some of the extreme weight that the TPN had put on her over this last 18 months, but it is SLOW. About a pound and a half per month. Her weight increase has been a major source of discomfort for her and our main goal is comfort. So we are choosing sub-optimal nutrition, but this isn’t great for her skin health. After about 6 weeks with this pressure sore, we are finally seeing improvement from all our efforts at hourly repositioning, ect. 

Hard work has been going into making a covered patio outside of Aimee’s room! We are all loving the fresh air and looking forward to many beautiful days outdoors either with Aimee or right outside her room. So much gratitude to the friend who donated the concrete, the friend who helped build the roof and pour concrete, the family who sent vertical planters and dirt to grow veggies on the patio. Everyone here is so excited! 

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.