Thursday, June 10, 2010

Clayton's Status

Clayton had a good afternoon yesterday and even got to go downstairs to watch the cars in the front of the hospital.  He was still acting quite weak, but at least we could see a little spark in his eyes.  The doctor came in and visited with us after she studied his old CT scans and shared with us several options. 

Clayton's shunt is overdraining.  His brain is just not used to this low pressure environment.  Sometimes people can adjust to this change given time, and sometimes another surgery is involved.  The problem is there are many different surgical options for fixing the overdraining, and not one is the clear cut answer yet.  So after much talk and thought, the neurosurgeons asked us to wait it out for two more weeks and see if he can make the adjustment.  This morning the residents came in to discharge Clayton with orders to limit his activity and have him lay flat as much as possible.  Didn't sound fun and made me anxious, but we were willing to do it since they were offering solutions if that didn't work.  (Not what we were getting at ACH). 

After they left, I got up to go to Clayton's bed (since the residents always come at the crack of dawn when I'm still in bed).  Clayton's pillow had something all over it and it didn't take long to discover that his incision was leaking puss (sp?) all over it.  Called the docs back in, they took a culture and immediately ordered antibiotics.  Problem is, Clayton's I.V. quit yesterday and they had only gotten that one after five sticks.  The doctor really wanted I.V. antibiotics, but was willing to do oral to keep Clayton from being stuck again.  But I think that if his culture comes back positive for something, a PICC line is coming in the near future. 

Since then, Clayton has been pretty lethargic and the spark is gone again.  He's running fever and his heart rate is pretty elevated.  It's just been up and down constantly for these last two weeks.  We know he still needs to be here (especially with how he's acted this morning), but I'm really missing my regular life at the moment. 

So as my mom and I used to say in the NICU . . . . . could someone please just
FIX THE BABY?!!!!!!!


Wherever HE Leads We'll Go said...

Thanks for keeping us posted. Ashley, I am so sorry to hear this! Just when you think you have something figured out - something else happens! UGH!

We will continue praying for:
- Clayton's healing and pain management
- Clayton's personality and spark to shine through
- Strength, endurance, comfort and peace for you and Brian
- Wisdom and discernment for the doctors/nurses

I can only imagine how draining this has been emotionally. Praying that the situation will be resolved quickly and life returns to normal.

lori said...

ashley: god bless you and keep you.
Clayton's healing is my prayers and the prayer warriors at church!

Sharpshooting by Sherri said...

Ashley you have our hearts and prayers for your family and especially Clayton.


Patti H said...

thanks again for the update Ashley I check here often. You guys are in my thoughts morning till night. I am glad you are getting some answers. I pray that Clayton does not have to go through more surgery. Hang in there Ashley. Hugs to you all. I wish someone would just fix your baby too!!

Nilsa said...

Hugs, thoughts and prayers for Clayton and his family.

Cheri Pryor said...

Thanks for updating. I'm thinking about you guys and praying for you every day. Hoping your little man gets some relief quickly! ((hugs))

Katy said...

I am SO sorry to hear this, but I'm glad that you have found a place to work on Clayton that you are comfortable with.

Honestly, the CVICU at ACH was incredible. The neurosurgery team? Well, they dismissed Charlie with an active case of hyrocephalus and didn't even tell us to schedule a follow up with them. If we hadn't had a really diligent pediatrician (who was also a member of our church, so he knew us)--Charlie probably would have suffered brain damage before we realized that he needed to be shunted. I think you're right about "something to be desired."

Anonymous said...

I am so disappointed to hear that you all- and especially Clayton- have not received the love and care that you deserve and need from ACH. We are sending every positive thought and prayer we can to you all, Clayton, and his treatment team in Memphis. Thank you as always for sharing news with us. Eva

TMI Tara said...

So glad to hear he's doing relatively well. You're always in my thoughts and prayers. Please let me know if there's ever anything I can do! Get better, Clayton!!!!