4.23.21 Hello Again

Hello dear friends and family. It has been quite some time since I have updated Aimee’s blog. Many are the reasons, but as it seems there is a new busy season ahead, it is again the simplest way to make sure that I am giving updates to everyone who loves our girl. 

We found out last fall that Aimee’s growth rods are maxed out/no longer functioning. With the help of her surgeon and her pulmonologists, we have decided that the next best step is a full spinal fusion rather than replacing the growth rods. She is now 12 years old and has only a small amount of spine growth remaining. There are concerns about Aimee’s respiratory future as her chest wall is becoming more flat and her lungs more compressed. We want to proceed with this final spine surgery while she is in the best health possible to maintain as much function as we can. 

This surgery is really big. New rods will placed and secured all along her spine with bone grafts throughout. It has not been an easy choice. We have met with palliative care and processed our goals and fears as best we can. Neither Ed or I want to do this... and yet we both feel that it is the best choice for Aimee’s continued health. 

 

Unfortunately, as we have now scheduled this major surgery and planned the year around this hospital stay and recovery, we have hit a couple of snags. One is that at this same moment, her Gastroenterologist has decided it is time to move to a colostomy. We were hesitant before, but have become increasingly overwhelmed with how difficult this area is. For Aimee’s quality of life and for our own, it must be done. But what to do? We have this major spine surgery looming. Could we possibly squeeze it in ahead of time and majorly reduce our risk of infection after the spine surgery?? Is it safe to do so? We don’t know yet. We will be meeting with the other surgeon soon to decide. If it is not safe or possible, we will still do it, just later in the year. 

Oh and another snag. I met with Aimee’s Neurologist yesterday. She is concerned about recent bloodwork showing a negative trend. White blood cell counts and absolute neutrophil counts are really low. She will not give her okay to anesthesia until we meet with hematology to find the cause. We certainly can’t open up a wound all the way down Aimee’s spine when she is at major risk for a bacterial infection. 

This is where we are at the moment. A bit uncertain. We are currently planning for a full spinal fusion on June 15th, but there are more doctors to be seen and decisions to be made first.

Overall Aimee is well. She spends more of her time asleep on her bipap machine than ever. She is only awake and attentive for about an hour in the morning and about 6 hours in the afternoon/evening. On a good day. 

Yet, when she is awake, she is home participating in school with us, snuggling with her siblings, taking walks outside, and enjoying family movie night on the couch. We sure love Aimee and pray continually for her healing.