Friday, December 12, 2008

Crewe's Sclerotherapy Postponed Again

Sometimes I wonder if achieving world peace is easier than getting the schedules of various doctors to line up. Going under anesthesia is no small thing for Crewe so we try to arrange multiple procedures/tests the same day so that he only has to go under once. In addition to sclerotherapy, Crewe has needed to have another laryngoscopy. The stars had finally aligned for both procedures early yesterday morning. 

It was the usual drill: No food after 11:00 pm. Leave the house at 5:00 am. Check-in at Phoenix Children's at 5:30. Wait. Wait some more. And then the unusual part -- Crewe has a fever. A fever means NO procedures. Argh. He's been so uncomfortable for the past 10 days, and I was really hoping the largyngoscopy would provide some clues. 

Crewe's ENT did agree to give him a local and remove some of the granulated tissue around his stoma (hole where they trach tube goes into his body). Crewe is definitely sore, but his coughing of the past 10 days went away almost immediately. For the first night in over a week, we both slept last night for more than just an hour or two at time.

He had a good morning today, but this afternoon and tonight have been rough for the little guy. He just cries because of pain and then throws-up because he gets so worked up. I wish I could take all of the pain away for him. It breaks my heart to see his bottom lip curl because he hurts. Motrin seems to help him be more comfortable. Hopefully he can keep the dose I just gave him down.

5 comments:

Ashley Kay said...

awww poor little crewe! im sorry he's still so sick! i hope he feels better soon! give the family loves from me :)

Mom said...

Camille, this breaks my heart. When you give us the little snippets of how your days and NIGHTS are so affected by caring for Crewe, I don't know how you do it. God must be giving you extra stamina and patience. And, hopefully Chris can give you some good naps. I hope you can keep Motrin in him so he's not in pain! Will the surgical proceedures help to curb pain?

Melissa said...

It is totally heartbreaking to think of any little one in pain and they can't tell you, but especially sweet little Crewe and all he must endure. So sorry the surgery got postponed, but glad they were able to give him some relief.

Margaret W. Hammond, RDN said...

Camille,
I'm sorry to hear little Crewe isn't feeling well. We really enjoyed getting the birth announcement you sent out recently. I've been following your blog and keeping him in my prayers. He is so precious. I hope I can meet him in person sometime. Are you headed to Utah for Christmas? We are going to Fred's house in Austin. If you are going to be in Utah after December 29th, let me know.
Love, Margaret

Niki said...

Oh, Camille, I am so sorry to hear this. He is so precious and it is so heartbreaking to see your children in pain. Hopefully he will get feeling better soon! We love you guys!