Tuesday, September 22, 2009


So I'm not sure what to do...we have cancelled all our 'non-essential' appointments for this winter, except for an upcoming cardiology appointment. I have been on the fence about this one, because we already have a cardiac baseline for Dakin, and save for a little tachycardia, he's fine. This all came about because a little SMARD friend of ours went into unexplained cardiac arrest--I nervously called up the neurologist, who assured me that that type of this is not at all normal for SMARD, but she wanted a cardiac baseline anyway.

I told them he had already had every cardiac test under the sun, but they went ahead with the recommendation anyhow...Gah. I don't know what to do. Do I risk taking him to the appointment or risk them not having a cardiac baseline? At this point, since Dakin's tachycardia is extremely well controlled on Atenolol, I am thinking he's ok to put this off for a while, but I just don't know.

Anyway. I called the neurology nurse to ask what to do. What would you do? I asked the cardiac people about coming right in and not having to wait in the waiting room, and they told me all they could guarantee for a vent kid was less than 10 minutes. Seriously? I hate to act like queen of the planet, but when your child's life literally depends on keeping him away from sickness, you have to be demanding.



Stitch 'N Love said...

I don't know if your appointment is a big hospital or not, but what about keeping him in the car until they are nearly ready? Have someone go with you to "check" in and then when they are ready, bring him right in? They have GOT to understand. Or one of you goes in to check in while the other gets Dakin out of the car?

I know that you have probably already thought of this, but wanted to give you something :)

I can't figure out Rocket and it not be too big to ship easily.

I will see about getting the other "faces" to you so you can pick out what one you want.... Purple monster, right?

Junior said...

wow this is a tough one. Can you stay outside until your appt. time.
Junior has an appt. tomorrow that we can not put off and we will be checking in and then going outside to wait.
Big hugs and prayers that Dakin stays germ free.

Colleen said...

10 minutes?! Wow. I agree with the above posters. We have also had to wait in the hall/outside before until a dr. was ready to see us. Let us know how the appointment went :)

Sky said...

well for us, Sky and I... I dont have any apts after mid september until may. The only way i would take him in is if I thought his life was in danger. Your his mama and you know him best. Go with your heart and you will make the right choice for you and your little man!

Mandy said...

I totally agree with,- you know best!! Sometimes we as moms second guess ourselves but I know that you gotta go with your heart!! We have debated on a surgery for Tucker to put rods in his back for two years and I am not doing it until I feel good about it!! Some think I am crazy others have thought it was a great decision. Ultimately we have the guidance from above and He knows best and if you feel you really need to do it, I agree with leaving him in the car until appt. then bring him in!! Good luck hope to hear what you decided!!