Tuesday, June 16, 2009

Boring Day Gone Bad...

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Oh what a day we have had here at duPont Children's Hospital. It's been a rough one. Actually it started out last night around eight when the nurse came in and said that the resident flagged her down and told her that Gavin was very sick and needed frequent vitals. She said that his cultures from the 16th are now growing out bacteria. I never heard from that resident until a little after midnight. That means I had a knot in my stomach for 4 hour waiting to see what was going on.

I felt better a little better this morning, as Gavin is still clinically looking good, until I later found out tat he is growing two bugs in his femoral line -- the same bugs that were in his central line before it was pulled. We switched up some of his antibiotics to ensure that he has better coverage, but the plain truth is that this is very scary.

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We all feel that Gavin bowel removal was a huge success. In the past four and a half months Gavin has had 3 infections, 4 if you count this new fem line. That is a huge improvement from earlier this year where Gavin was dealing with at least two infections per month. The other huge improvement is that Gavin has been fungus free ever since February -- that's very cool. With all that said it still stinks. We were all hoping for more -- even though we all know the reality. So now we are all thinking about the "what's next" question. I'm not sure we know yet -- though I know that everyone is working hard to find options.

Anyway -- what made the day really bad is that little Madison really struggled with our day. She listens to the conversations going on in the room and then is forced to deal with the scary things she hears. I'm learning that it's probably time to start leaving the room -- which is difficult. I was just on edge today as I was so tired and just couldn't find the energy to entertain both kids, which made for a day filled with Mommie vs. Madi battles.

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We did end the afternoon with some alone time out side sharing a brownie and taking is some fresh air -- trying to find peace. This little girl is amazing. I pray everyday that Adam and I would have wisdom on how to help her cope and find her own sense of self during these long hospital stays.

She is one tough cookie.

9 comments:

evwmom said...

This is all so scary! Evan has the same infection going on from his central line and the three day cultures grew back. We are trying to be positive, this is our 1st line infection and now to wait for 14 more days until the infection clears for the next picc or central is like an eternity. the iv's keep blowing and there is talk of a broviac. I am scared of dealing with another surgery for that one. We have been through enough this past 2 weeks. Hope Gavin's infection clears and he is back home soon. Love your pics of your daughter, her eyes are amazing and hold a lot of strength for her brother. Love to you all.

Courtney said...

i can't imagine what your heart is feeling...well, i CAN...because i have those feelings at the end of EVERY DAY with my kids...but just the normal "balancing 4 kids" stuff...not dealing with a very sick one on top of it. i don't know what to say...except i understand as much as i can...and i'm praying for you!

JayCee said...

Praying for Madison....

Love that black & white photo of her...she is adorable!

Shari said...

I have no words! I am so sorry this is happening! I hope things turn around soon and you can get home to your house soon! Hang in there! I continue to pray for Gavin daily!

Heather said...

Praying for you.Praying for sweet Madison.Praying for the tiny but mighty fighter Gavin.Praying for peace and strength for the journey.

BrunetteKoala said...

Praying for you guys. Madison sounds like such an amazing big sister, can't imagine what it must be like for her.

Rachael said...

Thinking of Madison... if it's anything like my daughter and her little brother, she is almost literally Gavin's 'other mother'. My two were 3 years apart, but were thisclose. Madison with Gavin reminds me of that.

She will be wise beyond her years. Well, and she already is.

Brownie breaks are brilliant.

Strength, mom. Just... {{hugs}}

Anonymous said...

Too bad you can't let Madi with family or friends so she's not always being exposed to all the fears and worries you experience. Praying for all involved.

The Rowe Family said...

Saying a prayer for all of you!!! Madi is LOVED and it shows. I think that's the most important thing of all!!! It's so clear that you are doing the best you possibly can as a Mommy :)!