Thursday, November 4, 2010

Kinda crazy

Obviously since I'm just now getting to post Halloween pics, things have been a kinda crazy around here lately.  We've had Keegan in and out of the pediatrician, cardiology, lab, and GI doctor this week, and I'm afraid we don't have a lot to show for it.  To make a long story short, some of his old tummy problems have started to make a comeback.

Around the time things got really bad & we decided it was due to his overnight tube feeds, we switched him to daytime bolus feeds, but his magnesium levels were also too low.  A little of his main heart meds makes it difficult for his body to absorb magnesium.  Too little magnesium causes heart arrythmias, which are hard to treat on the denervated heart of a transplant kiddo.  To raise magnesium levels (in addition to eating mag-rich foods), you give milk of magnesia.  This causes more frequent stools in healthy people, but in Keegan, it usually results in awful diarrhea.  He couldn't take it after just two doses.  We stopped the mag and eventually stopped his tube feeds completely at the beginning of the week.  We ran a bunch of labwork that didn't tell us much of anything at all. 

We hoped that by going cold-turkey on the formula tube-feeds, Keegan would show us that he could handle eating normally.  Not so.  We have an appointment with his GI doc tomorrow to discuss, but without the formula, he has returned to the way things were back when he was inpatient for all those many months. 

I can't say I'm not disappointed.  I feel trapped in an endless, vicious cycle that's merely compounded by the fact that no one really knows what is causing it.  After almost two years of this and so much progress, we still don't know what's going on.  I would be lying if I said I didn't fear it was all starting over again.  It's maddening.  Add this to the losses of friends we've suffered lately, I'll admit I'm pretty spent.  Burned out.  So, I will probably be taking a little break from the blog for a bit.  If we get some good pics, I'll be sure to post them and surely will keep it up to date if anything new crops up.  We don't have any major holidays or outings planned.  In all likelihood, we'll be staying at home quite a bit until things are a bit more stable.  And as cold and flu season is starting up in full swing, I frankly need some time to just catch my breath.  I know that's pretty difficult to do with two little ones, but I'm trying my hardest.  Thanks for your understanding and most of all, for your prayers.  We really do appreciate them.

1 comment:

Dustin & Kate said...

Hi Maddie!
Of course I remember meeting you at Lainey's party! Thanks for commenting on my blog. I'm glad Nora's crazy antics could give you a laugh and make you feel a little better about the trials of raising a spirited toddler :)
I too check on your blog from time to time to see what Keegan and Audrey are up to. They are both just precious!
I'm so sorry to read that Keegan is having these setbacks. I hope your doctor appointment today gives you some answers and some hope. You all will be in my prayers! Hugs to you!