Gavin will be having minor surgery

Tuesday is a huge day for the Lost and Tired family.  Gavin returns to the Cleveland Clinic and Elliott returns home from the Hamptons.
Gavin is scheduled for minor surgery at 10 am Tuesday morning. 

This procedure involves taking various skin biopsies from various parts of his body and using them to tailor a very specific genetic test. They will also be looking for neurofibrosis,  if I recall correctly.

The procedure lasts about 20 minutes and they made special arrangements to do it Tuesday.  The doctor that does this doesn’t normally do this procedure on Tuesdays.

After that we will have about 5 hours to kill before his next appointment.

The second appointment will be with the autonomic specialist.  This is crucial because he will play a huge role in getting Gavin into residential treatment. 

This will be a follow up and a consult as well.  We need to find out what it will take for Gavin to be medically stable enough so he can be placed in treatment.

This will be a huge obstacle to overcome.  In many ways,  this may be more challenging than the actual funding itself.

I have many worries about Tuesday,  the biggest being the minor surgery. Gavin will not be asleep for this procedure.  They will however, use a numbing cream.  I have no idea how the samples are collected and even less idea of how well this isn’t going to go.

I wouldn’t be excited about this happening to me.  I can’t image how Gavin’s going to feel about this. 

It may seem mean but we won’t tell him about this until the very last minute.  He will obsess over this if we don’t.  The reality is that one of two things will happen.  Either he won’t care or he’s going to care a whole lot.

There’s no middle ground. 

This was posted via WordPress for Android, courtesy of Samsung’s Galaxy S III. Please forgive any typos. I do know how to spell but auto-correct hate me.

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kat13

I hope Galvin doesn't have any fear towards needles, blood, etc. Numbing cream is awesome, but with my daughter that fears any blood drop that appears on her and what possibly doctors and nurses could do with all the needles, it just scares her! Even shots are tough, but doable, so I really hope that is not an issue with Galvin and good luck! 

lostandtired

@kat13 that is exactly what freaks Gavin out. I don't think it's pain it's the thought and or sight of blood.

ciugola

Numbing cream is amazing once the child realizes that it really works.  For my oldest we used it for allergy testing and he cried for 30 minutes, begging & screaming not to make him do it.  Luckily the nurse was patient, once she convinced him to try it was cake.  He was like wow, this doesn't hurt… Now we use it for allergy shots every week.  Hopefully Gavin will realize early on that he can't feel anything and not panic too much.  For us it's the total opposite, if we don't talk about it ahead of time we would never get my son to do anything.  Yes, he does over obsesses about it, but we have found that it just works a little easier that way.  I will keep you guys in my prayers that all goes smoothly or smoother than expected (we always take days like that) and that you get some answers that will move your plans along a little quicker.

lostandtired

@ciugola Gavin gets the cream for him monthly antibody infusions.

Jodi p

Good luck with the tests.
I have Neurofibromatosis. If that is what they are checking for
My daughter does as well but she has a partial gene deletion. It's more rare.
It is a neurological conditon.
Gives you small bumps on body and brown "cafe au Lait" spots

lostandtired

 @Jodi p I'm not sure what exactly they are looking for but it's at a cellular level.

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