Saturday, October 31, 2009



last night was a rather quiet night.  Gavin slept pretty well with the help of the breakthrough Morphine every 2 to 3 hours.  Through the night his respiratory status did begin to worsen forcing us to turn up his O2 to maintain his levels.  His chest is filling with gunk due to the narcotics suppressing his ability to take deep breaths.  This is a hard balance -- keeping him comfortable but still able to breath.


Today was the first day with the new doc and he seems to be pretty on the ball with things, which makes me feel comfortable trusting the changes we will make to his plan today.  We are going to put Gavin on a cough assist machine to help his break up the secretions in his chest and throat.  We increased his Fentanyl patch to 75mkg and his continuous Morphine is a 2 mg per hour.  For anyone who knows just how much medication this is -- unbelievable huh?  This kid is just chewing through the these meds. Another issue we are dealing with is fluid retention.  

He has full blown edema in most of his body.  For those that know Gavin well these photos are crazy -- where is my scrawny little boy? Late yesterday afternoon his fever broke but during the night it retuned with a vengeance.  Cultures are still negative, though I'm fearing that the femoral line is infected.  I have no idea with the plan is going to be.  We all want to give Gavin the best shot at life, and rushing into a new line will for sure shorten the time we have if we truly are dealing with a bacterial infection.  I'm fine with waiting.  Like I said before I have an odd sense of comfort in being confined to this room.  It's still safe here.  Outside these walls will bring reality -- I'm not ready for that yet.


Gavin's House is in full force!  Adam showed me the video of the current construction and my heart skipped a beat.  First because it was exciting but also because I can't believe it will be done this week!  Everyone who is taking part in this project is simply amazing.  The impact that you will have on our life can't be described.  The fact that I get to come home to a new home -- one that will make our life with Gavin easier, will make all the difference in our ability to cope with the inevitable.


Anonymous said...

Well, I continued with my daily routine this morning....cup of coffee, then check Gavin's blog! My heart aches for your family and Gavin more and more everyday! I just wish I could snap my fingers and this would all go away! Gavin reminds me sooo much of my son and I can't imagine going through what you guys have been through! I just don't understand why a liitle boy can be put through so much pain. It's angers me! Your family and Gavin are in my prayers always! Hang in there and take one day at a time!

Anonymous said...

Jut wanted to let you know were praying for gavin! I have 2 kids with cystic fibrosis and they both have chest pt vests and it does wonders for them! I hope it helps gavin as well.

Take care
Melissa, mom to 3 boys (2wcf)

Baylee and Blair's page said...

Blair had chest PT while she was on the vent after her surgery. I think it helped SO much with the secretions!

Big Hugs- Tiffany

therextras said...

I was struck by his hair - of all things. So seldom have I seen a photo of him without a hat.

Praying for Gavin.


Tiffani said...

What a tough time all of you are experiencing currently...

Praying you'll have strength upon strength and that you'll be gracious with yourself during these tough times as a Mama...

"The LORD your God is with you,
He is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing." Zephaniah 3:17

Much love to you and many prayers,
Tiffani in Georgia

Tiffani said...

ps--love having you on Twitter to get quick updates and be able to respond to you, too!