Friday, December 13, 2019

Vascular update and a few others

Unfortunately Broc ended being admitted the last week of November with a fever and extremely low blood counts. We are really hoping this is not going to be our new normal since stopping the IVIG therapy. As I mentioned in my last post, we cannot restart the therapy as there is still a Nationwide shortage and his numbers are not low enough for him to qualify for therapy again.



We will be seeing his Immunologist next week to see what our next plan of action will be. He has been having fevers which he is waking up with and they get higher throughout the day. Some days they leave him so drained, he sleeps for hours and cause lots of pain and other days he has the energy but his Tourettes Syndrome makes it really difficult for him to get around safely and his balance is really effected.

Lil Mark played in a recital at a retirement home with his friends. He played really well and we are so proud of how well he is doing. Music has been really become a great out let for him.



Last week Broc had an MRA/MRV of his abdomen to see if he has any arteries that could be effecting his GI system. We don't have the results from them yet but from what I can see it all looks normal.

This week the boys and I took a trip to Michigan to see his Vascular team. Broc had all his usual testing done as well as an ultrasound on his graft.


Brocs mandatory picture in front of Big Bird.


Getting comfy for the testing.


Ultrasound on his graft.


ABI and TBI testing.


Big brother being such a great help for me.

Dr Elisaon was very happy with all Brocs tests results. Unfortunately Brocs leg length discrepancy has progressed from 6mm to 8mm. The final read of the x-rays were 1.2cm for the discrepancy but that is measuring from the hip bone till the ankle bones. Dr Eliason is only concerned about the long bones so we will stick with the measurement of 8mm. Once that measurement reaches 1cm then we will have to intervene surgically. For some reason Brocs calcaneus are different lengths and that is what is causing the 1.2cm discrepancy. You can see the difference in this picture I took while he was lying on the table. For now to help him we will put a lift in his shoe to help him be more balanced and to help with all the pain he is having. We will go back in 6 months and have all the same testing done again.


His right foot is smaller and shorter than his left.

Now that we know Broc doesn't need vascular surgery I am scheduled to have my foot surgery on Dec 20. I know its a risk having my surgery but its also a risk not to have it. The recovery will be rough. Everything I do for myself or to myself is to make myself better so that I can take care of Broc and our family. There is no-one else other than myself and Mark that know how to fully take care of Broc. Hence the need for me to be here as long as I can and in the best shape I can be. We don't have nursing care anymore to help out so it all falls on us as parents and Lil Mark. He is understandably scared of accessing Brocs central line so that is left up to Mark and I but Lil Mark is learning everything else. 

We appreciate all the love and prayers and help if you can during the next couple months. 
🐸🐸🐸🐸