Jacob Update

[JacobKaden]

Well, not much of one - Jacob decided to work himself up into a fever the night before his procedures, so they cancelled them. He has done this before because he gets so angry, anxious, scared and he gets stiff, sweaty and feverish. The "powers that be" panicked and assumed that he must have an infection or virus brewing. They did a full blood panel, trach aspirate and so far, everything is negative, but they still did not want to take any chances. Jacob was perfectly fine, once he realized we were heading home.

This was very frustrating because it's an 8 hour drive and I had to take 3 days off work - what a waste of time! Also, they cannot reschedule until fall and the likelihood of Jacob being well once school starts are very slim. The only new update is that his ENT said he will not decannulate if Jacob cannot tolerate his voice valve, even if his airway looks perfect because he has to learn to manage his secretions. So, that is our next project. With his health being so fragile, the voice valve was not a priority, but it will have to be now.

[Kate]

bummer-that stinker!!! Man, I didn't realize it was that big of a drive-we have a 6 hour, so I know that it's a pain in the butt to reschedule...plus taking off work! Grrrrr.

Hugs

[JacobKaden]

Yes, all of Jacob's cultures came back negative. Fortunately, we were able to reschedule for August 28. We will not be fooled by Mr. Jacob again. On the positive side, we tried the voice valve for the first time in months yesterday and he tolerated it fine all day (12 hours) right until bedtime, without any problems, which must be a good sign, right?

[Ainsley's Mom]

Originally Posted by JacobKaden

Yes, all of Jacob's cultures came back negative. Fortunately, we were able to reschedule for August 28. We will not be fooled by Mr. Jacob again. On the positive side, we tried the voice valve for the first time in months yesterday and he tolerated it fine all day (12 hours) right until bedtime, without any problems, which must be a good sign, right?

I'm glad the cultures were negative. For us wearing the valve or cap again is the best sign that A's well. So I'm sure that's a good sign for Jacob. It's always so nice when they can wear their valve again.

[suzanne2545]

Poo! But glad it is back on the books. But sheesh, I'd be chomping at the bit waiting another two months.