An Update to the Updates

Friday, October 17, 2008

Mike decided not to continue on with the 2 day interview with the company I posted about yesterday. It turned out to be different than what we were expecting it to be. It's a blessing he was able to find this out yesterday and not waste two whole days being interviewed and then find out.

For the Cayman update: she is finally scheduled to see the Cardio Surgeon. I've been trying to get an apointment since Monday. I do not wait patiently very well when it's my child's comfort that is put on hold. The Nurse kept telling me that if Cayman gets worse and has trouble breathing or can't keep food down over 24 hours, then go to the E.R. That is good information, but I did not accept it gratefully since it was told to me under the circumstances of them not knowing when the doctor could schedule Cayman. It's not typical for me to be so outspoken. After 5 phone calls and a lot of waiting Cayman finally has an appointment. She meets with the surgeon next Thursday for all the pre-op tests and Friday she has surgery. I wish it was sooner but I'm just grateful that she has an appointment.

Here's what Cayman has been going through to help you understand why this matter cannot wait much longer:

Cayman was not herself over the weekend. Mike and I did not know why for sure. She would cry like normal when she was hungry, and take her bottle with such eagerness. However, after a few sucks she would push it away mad and breathe heavy. Her nose sounded stuffy so I suctioned it a few times thinking that might help. We could clearly see it was something with her breathing. We were not too worried at first. She'd done this before when she had a sinus cold. The weather lately has brought on a lot of colds and allergies for people so we just thought it was that. But then Cayman started vomiting after each meal...a lot. Then we became worried.

We were certain it was not her shunt. She didn't have any other signs of a shunt failure.

It suddenly hit us that it might be her True Vascular Ring squeezing her throat. It was the weekend and the doctor's office was closed. Cayman didn't need urgent attention so we waited til Monday to call. However, from Friday to Monday new symptoms appeared such as:

  • coughing and choking while eating
  • noisier breathing than usual for her
  • unable to finish a full bottle...she'd get tired half way through
  • lack of endurance for her physical therapy exercises
  • cry for no reason
So we saw the symptoms get worse over the matter of a few days and that is why I found it completely unacceptable that the doctor's office, at first, would not try to squeeze her in but instead let it become an E.R. case.

I fear it's going to be a long week. Cayman is not sleeping well. She fusses a lot. We've discovered the vomiting is controlled if she eats half a feeding at a time. Thankfully she's happy taking a smaller amount.

Thanks for all the prayers!

I took this video on Sunday. After playing it back I realized you can hear some of Cayman's noisey breathing in part of the video. It's towards the beginning. It's an airy gasp. Oh and sorry the picture is a little jiggley. Cayman kept grabbing the camera's wristband.

video

7 Showin' Comment Love:

Jerry, Tia, Kaiden And Hunter said...

I'm so bummed we can't get together, but hope and pray that all goes well for her and that nothing will happen in the mean time. Give her kisses and hugs from all of us! Talk to you soon.

-Tara said...

Kristen you and Mike must be frightened! My thoughts and prayers are with you and your family! I know Cayman will do just fine! She is a strong little girl! And kudos to Mike for finding out what he found out!

Kacey Bode said...

Oh Kristen, how scary. Good for you for demanding Cayman get in soon. I will be praying for her often!!

Sherri said...

How frustrating! Dr.'s can be horrible sometimes. We will be praying extra hard tonight. I don't know if I would be able to sleep if I were you! I hate when they get the attitude of "just wait and if things get real bad- go to the ER". You must be exhausted. Sorry you have to wait so long. hugs.

Jennifer said...

Kristen, I'm so sorry you had to go through that. I can't imagine waiting until next week!!!! Maybe they'll call you and say they had a cancellation?!?! Yeah right, ok, I'm dreaming. Anyway, I'm praying for you! HE keeps you in perfect Peace that passes our understanding!!

Grandma S said...

Cayman has a smile that just makes me melt. She is going to be able to get whatever she wants whenever she wants from Grandma.

Michelle said...

I know how hard it is to wait when you want them to do something NOW for your baby. We will keep you in our prayers this week, as Cayman always is. Keep us posted!