Tuesday, March 31, 2009
Monday, March 30, 2009
Saturday, March 28, 2009
Friday, March 27, 2009
Thursday, March 26, 2009
Wednesday, March 25, 2009
Thanks for your prayers and positive comments!
Tuesday, March 24, 2009
With all these fears -- somehow I'm still looking to the One who conquers all fear. Although my words sound lost at times, deep in my heart I know we have not been forgotten, and though we may feel this life sucks, Adam and I both trust that there is a greater purpose in all of this chaos.
As for Gavin -- He is a swollen little boy. His eyes, from which I can tell, are almost totally swollen shut. His counts have all drastically dropped and he received some albumin this morning in an effort to pull the fulid out of his tissues and back into his vessels. We are running lasix now and I convinced them to place a foley for a few hours to let his pee drain freely. Ever since the antibiotics began Gavin's fever broke. What caused the fever and the drop in blood counts?
We don't know.
Monday, March 23, 2009
Just don't have much else to say.
Thursday, March 19, 2009
Wednesday, March 18, 2009
Tuesday, March 17, 2009
Monday, March 16, 2009
Sunday, March 15, 2009
Friday, March 13, 2009
So here I sit at 5:00 and I'm rather bummed over today's events. We are getting ready to start another very long weekend and I'm wondering how in the world we are going to stay sane until monday.
It could be worse.
Thursday, March 12, 2009
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Wednesday, March 11, 2009
Tuesday, March 10, 2009
Monday, March 9, 2009
Sunday, March 8, 2009
We are so glad this weekend is over. Thanks to all who stopped by for a visit -- it really made the time go by a little faster.
Saturday, March 7, 2009
Take out Foley catheter -- and see the river flow.
Remain fever free.
Have negative blood cultures.
Begin Omegaven and monitor labs for 4 days.
Pack our bags and run towards the door like our bottoms were set on fire.
Friday, March 6, 2009
Thursday, March 5, 2009
We have had a negative culture from the infected femoral line so we plan to head to the OR tomorrow to have him broviac placed back in. I don't' think anyone has any long term plans, we are just taking one day at a time.
I'm just about done with this place. I've just reached my limit. It's one thing to be stuck here in general but another to be stuck here and standing over your hurting child 24/7, not to mention trying your hardest to give Madison to attention and affection she needs and deserves.
Please pray that this patch works to lessens to horrible withdraw symptoms Gavin is having and also pray that we will find his pain to be less once we wean him down off the narcotics.
Wednesday, March 4, 2009
Tuesday, March 3, 2009
Monday, March 2, 2009
Adam and Madison went home yesterday to get the mail and Madison was thrilled to find a few packages on our doorstep. Thank to those who sent the kids gifts -- Madison felt so special!
Hopefully this evening I'll have more to share -- right now please pray Gavin can find comfort.
Sunday, March 1, 2009
Yesterday evening was wonderful for Gavin -- early this morning has not been so good. It seems like he took a huge step backwards as far as his pain. He is still running a fever which is still a cause for concern. Gavin's underlying issues make this so difficult because children with Mito just do things differently, their bodies extreme reposes to the most simplest changes. This may be the case with Gavin but we just can't rule out infection considering his history. It looks to me like his liver and spleen are becoming more enlarged, which could be the be the cause of the increased pain plus the j-junostomy is putting out a fair amount of blood.