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. 

4.6.23 Concerns

Aimee has not been doing well this past couple of days following her short sedated procedure on Monday. Lots of holding of fluids in her abdomen and then dumping. Retching/stomach spasms. Hypothermic. Higher than typical resting heart rate. Generally not feeling well, lethargic or irritable. We are concerned. It may simply be that the sedation has messed with her gut. We’re waiting to see what clues she gives us next. 

4.3.23 Results

Quick results post.

Aimee did well through her sedated scope today and was so happy to be leaving the hospital for home. 

The procedure went well, though there is always some drama with bringing in such a complex patient. Unfortunately, we didn’t really get the results that we had hoped. The Otolaryngologist was able to cut out a ridge and a bit of granulation tissue, but said that the real issue seems to be that her stoma is very tight. In order to correct this, she would need to have a surgery to remove the tissue between her skin and her trachea, essentially it would be like getting a new trach again. It would require recovery in the PICU, ect. This is currently a “no” for both Ed and I. 

However, the doctor is hopeful that if we monthly replace her trach with a brand new one (instead of sterilizing and reusing them multiple times) that we will be able to get it placed with less trauma. We won’t know until we try with a new trach next month. If this works, we would just need to present arguments to the insurance company for a new trach each month rather than a new one every 5 months. 

I had hoped for a better resolution than this, but I am grateful to know what the problem is and so thankful to have brought Aimee home again. It was a long exhausting day and Aimee bled quite a bit, but she is with us.

Also, I met with the urologist this morning following up on her renal ultrasound. She has a lot of debris in her kidneys and a decent size stone in one. At the moment we will just monitor this and, as long as there are no symptoms, repeat the ultrasound in 6 months. 

4.2.23 Scope

Ready for a little heart to heart? A potentially confusing mess of emotions? Great, then keep with me. Ed and I are like two zombies right now going through this round-robin over and over.

I want to admit two weaknesses. One, I am not strong at expressing emotion. Two, communicating takes so much energy for me. I am recognizing these less strong areas and sharing them with you, because it may seem like everything is under control, but it is an illusion. We have created really good routines that keep us afloat and we have sweet moments together, but it doesn’t stop. And there are times when we are spinning and spinning... I am left without words to communicate with people that I care about. I regret this. Talking is hard. I do care. 

We did have a night nurse start 2 weeks ago. Yes, that sounds hopeful and promising. So far it has been exhausting and difficult. Training, working with the new nursing company, and honestly just talking with the new nurse through her shifts… I am bone dry. I want to just throw in the towel and send the nursing company packing, but I’m trying to dig deep, make it through the first month, hope it will mean 3-4 nights a week with uninterrupted and full sleep. 

And then, while Aimee has been doing well since her last round of IV antibiotics, there are a couple challenges that I hinted at in my last post. Renal ultrasound last week had some concerns (appt to discuss with urologist is in the morning), issues with bleeding at her central line (vitamin k infusion seems to have resolved it, hopefully), and currently most pressing, issues with her trach. We change the trach monthly at home, but recently Aimee’s trach changes have become so scary that we feel that we can no longer safely put off doing a sedated scope. We are taking her down to the hospital tomorrow. 

It may not seem like a big deal, but it has been the most difficult decision we have made this past year. We are both emotionally and mentally struggling with it. If we want to continue being peacefully at home with low amounts of trauma, we must, but I feel sick thinking of wheeling her towards the surgery center, of walking the halls with an empty wheelchair again. All of the days that we were apart come back. My whole being revolts against risking it. We cannot, we must. Oh my girl. I thought I would never put you through any more of this again. Yet… 

We will take her down on Monday for what is only a day procedure. In terms of what she has been through, this is not a big ordeal, but the decision to do it has been. We had made a firm line. We would not put her through more sedation. We would do no surgeries. We would only take her in to stop pain and to do upkeep on the systems that are necessary to keep her at home. Yet… 

We are praying that there is an obvious issue that the otolaryngologist can simply remove the tissue that is obstructing the trach insertion or widen the airway in some other way. And that this procedure does not set Aimee back. 

For the last note, here is Aimee enjoying our weekly family movie last night.