Friday, July 22, 2011

Lines, fevers, and an apology

Once again, I feel like I need to apologize for not updating this blog often enough or well enough.  At one time, this blog was therapeutic and even a cathartic outlet for me, as well as a way to keep our family, friends, and Keegan's many supporters up to date on his health.  Lately, I dread sitting down in front of the computer.  I don't feel like I have a good enough grasp on Keegan's overall picture to relay it well here, and a big part of that uncertainty is that our doctors don't seem to know what is going on.  Nor does it feel like they are very committed to working together to figure that out right now.  The coming weeks are beginning to look very challenging for Keegan.  We, as a family, are anxious, scared, and yet trying to do the best we can to get the best care for our son.  I am having a difficult time coming to grips with how I feel about all of that.  When you can't find your words, having a blog hanging over your head is quite daunting.  So, I apologize for the ambiguity and the delays lately.  I pray that I will be able to rediscover my voice, perhaps my confidence and faith too, soon.  Until then, I will do my best to keep this blog up to date with what is going on and how Keegan is doing, and we appreciate you giving us the grace and time to relay it all on our own terms.

So, on to how the last two days have been for Keegan.  In a word?  Rough.  But he is such a trooper.

Yesterday, he endured round 41 of general anesthesia to have his PICC line exchanged and put back in the right place.  They basically threaded a guide wire through the old line to keep the vein open, then threaded a new catheter over and past the old one before removing the wire.  A few new stitches, and he was done.  He came through it all well.  Especially considering he was in the throes of yet another fever. On our way downtown to the hospital for the PICC exchange, we stopped at the GI clinic at the Legacy campus for labs and blood cultures.  Surprise, surprise - just like every single time before, the blood cultures are still negative, and his blood work does not indicate a bacterial or viral infection.  The fever was looming all day Tuesday, and it reared it's head for good around 4am on Wednesday.  We were luckily able to explain Keegan's history with these fevers and the need to maintain his IV access to the anesthesiologist, who agreed to go through with the PICC exchange.

Before going into Interventional Radiology, Keegan and Aunt Alex played a rousing game of "diaper heads."  You can somewhat see how swollen he is.  We made some changes to his TPN again today to try to encourage some fluid and weight loss as he continues on the steroid wean.

Children's radiology department is undergoing a major renovation.  This wall is right outside of the IR lab.  Keegan added his mark to it because he does, indeed, rock.

The scary thing about this fever (that didn't break until this afternoon) was that it was spiking through the IV tylenol.  It used to be that the tylenol would bring the fever down for 6 to 8 hours, but this time it would spike back up right before the next dose 4 hours later.  However, he maintained a little bit of energy throughout the entire cycle, which was encouraging.  I am terrified of what he will face next week.  If these fevers are so aggressive ON the bigger steroid doses, how bad will it be when he is back to his maintenance dose?  If you remember, the last fever before we started the steroid pulse absolutely, positively flattened him and caused him to draw blood to his major organs and be sick to his stomach.  I really don't want to go back there.  I don't want him to go back there.

Exhausted today from the fever finally breaking.

In only 10 days, Keegan will be back down to his baseline steroid dose, and I just don't think we are ready for that.  This pulse really did nothing to improve his GI symptoms and caused him some major wound-healing/bleeding issues.  It did give him a bit more stability over the last several weeks and kept the fevers away for about a month.  As of this moment, we have NO plan for what to do when the you-know-what starts to hit the fan again.  We are trying our best to get his medical team to make a plan, but I'm not sure that's going to happen.  There will be some definite serious discussions with several of the doctors in the next week, but if things don't start to change quickly, I think we will once again be considering going somewhere else to get Keegan some help.

That's abut all I can muster tonight.  I am not even going to ask for prayers for Keegan tonight.  Please do, however, keep our little friend, Rylynn, in your prayers.  She has been waiting on her angel heart since the end of last year.  This week, her own heart was struggling too much, so today, she underwent a major surgery to have a ventricular assistance device implanted.  Please pray for her stability and strength and that her miracle comes soon.  Thank you so much, friends.

3 comments:

Lorin said...

Thinking about you guys and praying.

David and April Vinson said...

Still praying! Sending you love from the Vinsons!

Christy said...

Maddie - I am a nurse on C8 - I don't know if you remember me or not, I don't work that often any more. But I just wanted to let you know that I have been following your blog and I have been praying for you guys. I can't imagine how hard this must be. You carry it with such grace and honesty.