When Dr Hege drew Brocs labs the last time we were there she was so happy with them and was ready to tell us that things are looking up and we are just going to be followed. Meanwhile back at the ranch we were having weekly labs drawn and once she got to see all those numbers she was flawed and knew right away that there is definitely something going on and thankfully she is not going to usher us out the door like so many other drs have.
She went through all the testing that she has done so far and everything was nornal or negative which is great on one hand cause you never want something to be positive but on the other hand you sometimes wish something to be positive so you can finally have an answer.
We also went through the next phase of testing that will be done on our next visit to see her which will be at the end of the month. We are holding Brocs IV therapy so that his immune system will be (clean) when the next set of labs are drawn.
We will also be meeting with a Bone Marrow Failure Specialist at our next visit. She is hoping that he will have some ideas on what we are dealing with and what our next steps will be.
He is still scheduled for a bone marrow biopsy in Oct when his GJ tube will be changed out. We asked her if we are doing everything we can to protect Broc. She said yes staying away from crowds and public places when his ANC is around the 500 mark and lower is crucial. We also need to get him a more heavy duty mask to wear when his ANC is between the 0-600 level and we absolutely have to be out.
If Broc does get a fever of 101F we have to take him to the ER for IV antibiotics. Last time we thought that I could manage it at home but she said that I need to be his mom and not his nurse and Dr. We expressed how we didn't want to go to the ER as we have been told the same old viral illness story over and over and there is nothing they can do for him and we are wasting our time. She said if that happens we are to call her office and they will take over Brocs care and the Drs will have to listen to her team.
She is also thinking that his low WBC and Neutrophil counts and sometimes other counts too are not viral illness related. Sometimes they will be but not every low count will be attributed to illness.
Most of our Summer has been spent at home with friends. The boys have been doing playdates, picnics at the park out in the open or riding their bikes at home. We have avoided play places and the mall. Parks are great cause they are out in the open air. We did go to the zoo last week as a family. It wasn't too hot and we had a great time. Normally we would feed animals and sometimes even touch them but we were all hands off this time. We had Brocs counts checked the day before so we knew that it was safe to take him out. Unfortunately we will be missing out on parties,graduations etc if Brocs counts are not safe to take him out or if he is ill.
Quality of life is also very important for him too so we are trying to find the balance between keeping him safe and enjoying being a boy.
Here is a picture of the chair that Broc will be getting. His chair will be red or orange. This will enable him to be out with us even though he doesn't feel the greatest. It will be supportive enough for him too that it will help with is leg fatigue too.It will also allow him to sleep when he is tired too.
Here is the link for the fundraiser for Broc. www.booster.com/brocsbuddies?
These two boys really love each other. On days that Broc is not feeling well, Lil Mark will climb into bed with him to keep him company.
The endless catch-22 of a "mystery kid" is the whole please-be-normal please-don't-be-normal dilemma of testing. Either way it goes, you just don't "win". Normal means things are still a mystery, not normal means there's something definitely wrong. I'm always conflicted on which I should be rooting for :-/
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