Friday, May 19, 2017

Medical updates

Some of the boys' immunology tests are starting to roll in. It's times like this when I try to decide how much I love the 'MYChart' concept.  You see the results long before you ever get to talk to the doctor about the findings.  It can be a mental challenge more than anything.

Immunology testing is hard to interpret!  There is not one familiar term and it's not like they are measuring white cells- at least the neutrophils or granulocytes I know all about.  It's complex.  So, I can't say for sure how things are looking.  I could easily tell that Sam has not held titers to any of his immunizations and that is not a good thing...I know that.  Spencer seems to be looking in better shape than Sam.  I was actually hoping his immune system would hold some key as to why he can't eat anything without getting sick immediately afterwards.  Maybe it does and we'll just have to wait.

I have blown it this week in any follow up appointments.  I was suppose to get Sam in to our Cardiologist because things have gotten worse in that department.  I really don't want to take him back to our Genetic Cardiologist because he couldn't explain the heart issues last time and was pretty perplexed.  I did appreciate his honesty but it wasn't helpful.  I think he needs to see a cardiologist who specializes in the electrical outputs like Spencer sees but I don't love Spencer's Electrocardiologist at all!  He has a horrible bedside manner and sees to be annoyed with questions but, it seems weird to have all my kids with a different cardiologist.  I'm so conflicted about what to do, so I have done nothing!

I also didn't get Sam scheduled for allergy testing so we can start the prophylactic antibiotic.  Sam doesn't deal with his health issues very well because of his processing issues.  I was hoping things might calm down a little bit for him before we undertake new testing, especially on his heart.  He has a job he absolutely loves and to hear that he can't do that because of the stress it creates on his heart would be devastating to him right now.  With that said, in my own heart, I know he shouldn't be doing what he does but at what point do you just let them live as normally as possible and pray for the best?

It's a tough place to be and I don't have the answer quite yet.

Shelbie continues to struggle with her bulging disk.  She had a couple of good days but the pain still plagues her.  She doesn't complain though, she's a trooper.  She has a new boyfriend and he seems alright by her definition.  He seems to be respectful and that's a bonus! Boyfriends create this angst for what point does she tell him about the health issues?  Again, a tough place to be.  Not that this is going to end in marriage but he asked her how many kids she wanted.  He wants 6! Conversations like that are a strained reminder that life is different for her.  As much as she wants to be normal, she isn't. The more he probes to get to know her, the more difficult life gets.

As far as Shelbie's testing goes, again, it's hard to say for sure but in my inexperience and study of Catecholamines, it seems that her testing came back low.  I'm not sure what low means other than depression, anxiety and other issues like that but high is what we definitely didn't want.  High  Catecholamines are responsible for brain tumors, which Shelbie has but not caused by Catecholamines it doesn't seem.

I may be changing my whole tune after I talk to the doctor because I may be wrong on all accounts but this is where we stand.

I feel neutral about all this right now.  I am still sufficiently worried but it's not disrupting my day.  I know the doctors are doing all they can right now...I do need to get over my denial and get Sam into the heart doctor...not going to lie, heart issues scare me and a 19 year old with a pace maker scares me even more.


1 comment:

  1. Do you know you are a fabulous mother? You can see how you really focus on each individual and how much you love and want to do the best for each if them. I feel grateful and humble to see some of your journey together.