5.30.22 Soulumination

Hospice connected Aimee with an incredible local organization that provides professional photos to patients with life-threatening conditions and their families. A couple of weeks ago we coordinated a session and yesterday received a beautiful box of custom photo gifts. It included a little photo gift for each of the kids with a picture of them with Aimee and of the whole family. Below is a selection of my favorites from the session:

5.13.22 Infusion

Today Aimee is spending her day down in the hospital for a bone infusion. It is like being inpatient for the day. So far Aimee is having a difficult time with the pre-meds and is very agitated. They were unwilling to give her tylenol by IV because of expense and any extra enteral meds are so hard on her. Thankfully all the other meds they were willing to give by IV. Everything is complicated with her now. Just getting here has been so stressful. We have to be a mobile ICU. 

Grateful for the central line today. Aimee is a hard IV to place, a difficult poke to draw blood. One thing that is just much easier now with constant access. At least we did not have to deal with that difficulty.

When we finish with the infusion, we are hoping to have the replogyl replaced in radiology as it is causing bleeding in her stomach and pressure on her nose. There have issues getting anyone to be willing to replace it for us. Hoping that today we finally get it done. 

Personally I have been dealing with a lot of anxiety and frequent nightmares. Up to this point, I have been coping okay. Now, after this last year of “holding my breath” emotionally and just not processing what is happening, it is beginning to get me. All of the decisions to be made, even the simple ones, feel like a ongoing, overwhelming barrage. 

Yet, we have reason to keep going despite the tension, the relentless round the clock stress. It is valuable and good to care for Aimee. It is sweetly precious to keep these kids together. 

We took the kids all on a drive a couple weeks ago to see the tulip fields as we finished our study of the Netherlands. It had been one year since the last time we had all been together for a drive. It was very sweet how excited the other kids were. We all miss these small bits of normal family life. 

Update:

Happy to report that we were successfully able to get a new replogyl placed. It was a feat for sure, but Aimee is now home and aside from some nausea and hypothermia, seems quite pleased. She even gave us a few grateful smirks when she got back to bed. I think being in the hospital made her feel nervous. Honestly, we all felt pretty sick just being there. Not where we want to be.