Tuesday, January 25, 2011

Glo-fil

Thank you so much for your prayers for Keegan's kidney testing yesterday.  It was a loooooong day, and knowing that so many were lifting Keegan up in prayer made such a difference.  We are continually at a loss for words to express how much your support humbles and amazes us. 

We were at the hospital before 8am yesterday.  Keegan went first to the Solid Organ Transplant clinic to have his port accessed and some other labs that were needed drawn first.  Nothing wakes you up and gets the day started out on the right foot like someone sticking a big ol' needle in your chest.  We thought that all went well, but it turned out later that his port might have not been accessed properly first thing that morning.  Then, we checked in to the nephrology lab.  It didn't start off well when we put him on the scale, only to find out his weight was up another half a pound over the weekend alone, despite getting extra diuretics this week.  I won't bore you with the details, but the dye didn't actually get injected until almost 11am.  It was supposed to be a 5 hour test after that.

By the time the 3pm blood sample needed to be drawn, we could barely get anything out of his line.  I lifted his shirt after the nurse had tried a few times to find the dressing, his chest, and his undershirt soaked in blood.  I really don't know what happened, but it wasn't good.  We grabbed the kidney transplant coordinator (whom we unfortunately are already familiar with), and he said we had to take the first needle out and try again.  That worked for that one blood draw, but 30 minutes later, we once again couldn't get any blood from his line.  At this point, we were all frustrated and exhausted and starting to worry that if a clot had formed in his port, we were quickly headed to finishing the day in the operating room....not to mention that we might not get enough samples to complete the test.  The poor nurse running the test started paging anyone and everyone, and we finally got some nurses that were a bit more knowledgeable about ports.  They tried their best to save the line, but ultimately had to pull that needle and reaccess him....a third time.

Let's just say, it was almost 6pm by the time we left the hospital.  We hope we got samples that will work to complete the test.  Keegan lost an inordinate amount of blood betwen the blood draws and failed lines, and I think I have some hearing loss from him screaming in my ear through it all.  He was beyond pale and bruised today.  We are anticipating getting results from the test sometime this week.  Keegan saw his GI doctor today.  He ordered an abdominal ultrasound to be done sometime this week.  We are confident at this point that all of Keegan's doctors are working hard to try to find out what is going on with him lately.

When we get more information, we will certainly share it with you.  In the meantime, here are some pictures from yesterday...
Exhausted after the first half of the day...before the port fiasco.  Good thing he rested up before all that.

Trying to make the best of the situation by playing "Dr. Keegan".  The white plastic under his left armpit is the needle that accessed his port.  The line going into his stomach to the left of his bellybutton is his g-tube, which pumps formula directly into his stomach.

I am continually amazed at the strength and resiliency of this little boy.  After being poked, stuck, and bruised for a good 30 minutes, he sat up, hugged the nurse, and put gloves and a mask on to play.  At the end of the day, he looked at the nurses in the room and said "tank you!"  My heart breaks that this is his "normal", but I try to take my cues from him.  To endure, regroup, put a smile on my face, and thank the staff at Children's that work so hard to try to make him feel better every day.

We will update again soon as we know more.  Thanks again for all your prayers and support.  We simply couldn't do it without you.

4 comments:

Ashley & Chuck said...

Bless his heart! I hope they were able to get enough blood to get accurate readings for the test. Thanks for the update. I pray for you all daily!

tori said...

As I have told Grey I thank you guys for sharing your battle with us. I would argue that anyone who reads this gets as much from it as you guys get from others. I know my fiance and I get inspiration from keegan and a reminder to appreciate the life we take for granted. as two people looking to start a family we look at you and grey as an example of the type of parents we can only hope to be. to say reading this blog has had an effect on the way I think, evaluate my life and interact with others is a gross understatement. so ,I thank you guys and I thank keegan

Jennifer said...

Ditto to what Tori said! I feel like the prayers are our way of saying "tank you" to you guys for sharing your journey with us. You are a constant reminder to me to be grateful for my blessings. This week I will be praying that you got enough blood for accurate reads and that the testing will bring positive results!

tori said...

and tell gray i am sorry for spelling his name wrong. i have two friends with that name and one is spelled with an "a" and one with an "e" and i am easily confused ;-)