Monday, September 30, 2013

Update

Thanks so much for everyone's support and prayers over BJ's health.  Even if we don't have a ton of information more, it has helped immensely with peace for me over what is going on.  Thank you so much for that!!  (Even the sheer numbers of people who read the blog- 110 views is astounding.  Thanks for caring enough to read) I don't have a ton of answers for my update today, just some more info.  Tomorrow we head to the cardiologist for them to check out his heart size.  I'm half expecting the cardiologist to say we don't need to be there, and half expecting another slew of tests to be ordered.  We'll just have to wait and see.  Our insurance company doesn't want to cover the genetic blood test our pulmonologist wants to have done, so we did a sweat test and it came back negative.  Negative, as in, BJ does not have cystic fibrosis, definitively (within whatever false negative rate the test has).  Yay!  But he could still be a carrier and have similar issues to what he is having now, with less negative impact for his future.  Praise God!  Then next week we had to the gastroenterologist to see what they have to say about his poor gut.  He's had a bad week last week discipline-wise, but it may be just all the chaos.  That's really all I have for you right now.  I'll see what time/energy I have to update tomorrow after cardiology.  Thanks again for your support.  It has been amazing.

Tuesday, September 17, 2013

Health

I'm really hesitant to write this post for a lot of reasons, but the whole point of the blog is that this is our family, our life, so I'm writing it.  I am unbelievably thankful for BJ's health (and improved health).  I had no idea what to expect back in residency with a sweet asthmatic baby, pulling long hours at work to come home and do neb treatments, stressing about taking more sick days, etc.  We could have it so much worse.  Plus, there are countless moms whose greatest nightmares have come to life in their kids awful diagnosis or worse.  In no way am I trying to compare myself to them, or belittle them.  Their strength is amazing on a daily basis, and they deserve years of pampering.  But, I'm also allowed as a mom to feel and be frustrated :)  And today, I'm tired and frustrated.  It came to our attention quite a while ago that BJ was having some issues with his gastrointestinal tract.  I, being the lovely Dr. Mom, didn't panic and took forever to make an appointment for him to be evaluated.  So, we had him evaluated and found out he was horribly massively constipated.  A total shock to both of us, but I saw the proof, so I have to agree.  We brought him back home and set out to "clean him out."  Anyone who has ever had a colonoscopy, bless you- that stuff is dreadfully disgusting.  We spent the day in tears.  BJ crying because it tasted awful AND he wanted to eat AND he didn't want to drink anymore.  I cried trying to explain why he had to go through the awfulness AND trying to rack my brain on how to make it better.  And Anika cried because she wanted to drink what her brother was drinking :)  Prototypical Anika!  We survived, the medicine seemed like it was doing the trick, and we hoped and prayed we never would have to do that again.  He got set up on a daily regimen to stay cleaned out and we went on our merry way.  Except, it didn't seem to be changing any of the original issue, and now BJ was complaining of belly pain.  So, back to the doctor, another x-ray, another eval, and we find out, the clean out didn't do a lick of good.  Not one iota of change.  I could have cried.  Seriously.  So, back to the drawing board on why my poor kiddo is so constipated. We completely dropped dairy from his diet.  We had a thyroid study drawn (gotta love blood work in this age group- I cry because he cries), and were sent back to the pulmonologist to evaluate for cystic fibrosis.  (Side note to catch up- we've had the sweat test for CF done twice before with no results- and it isn't the diagnosis you want your kid to have, if you have a say in it.)

Fast forward to today.  We have an appointment at Children's with pulmonology.  No appointment at this facility is cheap or fast, but they are amazing with kids- so we keep driving the 45+ time to come.  Plus, BJ knows the place, and his favorite doc is there.  We haven't even had vitals done when the nursing assistant helping our doc out today tells us to head down for a chest xray.  Not what I expected, but they are pulmonary, and I know enough to not argue (too much) with our docs.  Head down, back up, pulmonary function testing- hysterical in a 4 year old, back the room, meet with the nursing assistant, wait for the doc.  (Might I say as my sweet guy who normally naps is fading fast at my side).  (But clearly I feel I need to draw out the drama because this post is already longer than it should have been.)  So anyway, he thinks the chance of BJ having CF is extremely small (mental sigh), but that he might be a carrier and thus having some issues because of his carrier status.  He wants to run an expensive genetic test to see if BJ is a carrier and get him in to GI.  Great, fabulous, done.  Until the next part.  And oh yeah, we did a chest x-ray because his heart looked big on his abdominal x-ray and it is big on the chest xray too.  I need you to see cardiology.  I totally laughed.  Seriously, out loud, laughed.  I think he misunderstood me, because he started to explain why it was important  But I understood, just was shocked and overwhelmed at the idea of another issue to figure  out.  My sweet child- the proof that you can do everything right, breast feed, make your own baby food, have a dog, get rid of the dog, feed him a diet that is healthy and full of fiber, and pray over him- and still have things not go right.  I smiled, thanked him, walked out, attempted to schedule 2 visits, scheduled one, called Brandon, got Beej buckled in his seat, and cried.  Cried that my sweet "healthy, normal" son has more in his continuing health saga.  Now, at the ripe old age of 4, will have a PCP, pulmonologist, allergist, ENT, general surgeon, gastroenterologist, and cardiologist.  Some days, I find that exhausting.  And some days, I remember my friends and acquaintances who are morning a loss of a child, or praying he or she will leave the hospital and live a life as normal as BJ has it. Thank you Lord, for keeping him safe AND healthy.


Sunday, September 8, 2013

Our little gentleman

This post is in no way a "bragging" post.  I have made countless mistakes parenting (Brandon has made a few) over the last 5 years, but despite that and because of God's grace, we are seeing a sweet little gentleman emerge from BJ lately.  It is so great to see glimpses of what we are working for over time.  Lately, he's been doing much more mature things, like asking how he can help, helping watch out for his little sister, offering affection/complements on on his own, and rubbing backs/giving hugs when he can see I'm getting frustrated.  I'm so proud of the little man he is becoming and thank God regularly for the blessing of BJ in our lives.