Once we had Brocs eyes checked for no yeast balls it was decided that he could get a PICC line so that he could continue to get his much needed TPN.
Going down to surgery is really not that big of a deal for Broc anymore as long as he has his frogs, taggie and tablet with him.
Once he got back from IR he slept most of that afternoon. That evening we decided to give him a good hair wash. Not his most favorite thing in the world to do.
Thank you to all the people that send him get well cards through the Riley website. It really was so cool to see where all the love was coming from. We had some from Australia, Japan, UK, South Africa and many other places.
The Thursday we then had another echo done on his heart as he was still spiking fevers and not a very happy boy.
Once again we got great news that his heart is doing well and has no yeast growing on it.
Friday they decided to move Broc out of CVICU as from a cardiac standpoint he was doing well.
Happy to be moving to the Step Down Heart floor. There things will be much quieter and we could get better sleep.
Infectious Disease was consulted again as Broc was continuing to have fevers and increased blood counts. Our plan was still to go home on the Saturday but if the fevers continued to spike high then we would have to figure out another plan.
Thankfully his fevers held steady so we were able to leave on Saturday.
Thank you to the special friends that came to say goodbye to us. We really appreciated the company.
Since we have been home Broc has continued to have fevers daily, increased heart rate and been very pale. We did have an ER visit last week as some of Brocs lab results came back very high.We drew blood cultures again to make sure we are not missing any infections lurking in his body. Cultures have all been negative which has been great news but also frustrating for us.
His team have come to the conclusion that all his fevers,increased heart rate, the way he looks and his high blood counts are all part of his bodies healing and inflammation process. Some numbers are coming down to his normal and some are still way up there. To say this has been stressful for me would be an understatement. This has taken a huge toll on me emotionally and physically. My body is exhausted!! Seeing his counts coming down has been a relief. He is still napping daily and tiring easily. He has neck pain on and off and is still very pale. We are still keeping him away from crowds until the end of the month.
He will be seeing his vascular team next week in Michigan to see how his legs and graft are doing. The following week we will have another echo and EKG on his heart and see his cardiologist.
The week after that he will hopefully be getting his PICC line removed from his arm and get a new tunneled broviac in his chest again. They are so much easier to care for and Broc is much more at ease with that dressing change vs a PICC line dressing change. The broviac is stitched into his body and the PICC line is not so we have to be extra careful when changing his dressing.
I am dealing with my own health issues once again which takes a further toll on my body and makes it a little more challenging to take care of Broc and the family like I would like to. Ehlers-Danlos is not a fun disease and is really breaking down my body fast. I may be looking at more surgery in the near future.
Thank you to everyone that supported our fundraiser. Your t-shirts or hoodies should be arriving in the mail soon.
Brocs heart journey sure has been a rough one. We know that in the future down the road he will be looking at another Aortic Valve replacement. Thankfully they were able to put in a 23mm (adult) sized valve in for him so we are hoping that he will get between 10-15 years with this new valve.
Thank you for all the continued love,prayers and support from everyone.
🐸🐸🐸🐸
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