Thursday, October 28, 2010

Unexpected Everything

So basically everything lately hasn't been going quite like we expected. More so than usual!

First of all Amber was supposed to have her heart, brain MRI's and her heart catheterization last Friday. Well that didn't happen! We got there bright and early Thursday morning (ugh 8am) for our meeting with the palliative care team. That didn't really happen we ended up being really late so we started our day super stressed out. We were able to register early and get her x-rays and paperwork out of the way. Unfortunately whoever was being discharged on the cardiac pre-op floor took forever so we waited a good 9 hours till we were able to go upstairs to her room. I'm not even at the worst yet! The Dr's and whoever was in charge of Amber didn't look over her charts/previous medical history before they brought us in. This super sucked because they finally realized, after looking through her history and talking to specialists that they could not do any of her tests because she would need to be intubated for all of them and would also need an ICU room to recover in and none of the ICU's had any open beds. So they sent us home! We spent 12 hours there for nothing it was so frustrating. It was also good in a way because we were really stressed out and worried about her being intubated. As far as rescheduling the tests go we aren't sure, it's going to talk more talking about amongst her specialist and a few new people.

This Tuesday was supposed to be the big meeting between all of Amber's specialists. Well it still went on only we were no longer able to go. I guess since none of them had meet together before they wanted one meeting together to talk about things without us....without explaining everything to us. It was very disappointing to hear because I have a lot of questions I would like to ask certain specialist while other specialists are there to back me up! Tomorrow morning we'll go see her metabolic geneticist and the palliative care team to hear what they discussed at the meeting and start making some decisions.

If you were wondering about her elusive glasses, they came in on Tuesday but they weren't the right prescription. This means they have to be sent out and probably another two months.

The worst unexpected thing this week was Amber being really sick. It started Monday with a fever in the 100's and her throwing up a lot. On Tuesday she looked like death, we had to turn her oxygen up and her fever got all the way up to 102.6 it was awful. We ended up taking her to the Dr's and they told us it was a reaction to her MMR vaccine. I was really confused since she had the shot two weeks ago but that's apparently how that vaccine rolls. She still had a fever yesterday but thankfully today she didn't have a fever but still looked a little under the weather.

Poor thing : ( 

Things have definitely been off, which always makes thing extra stressful but we're looking forward to relaxing this weekend and hope next week is better! I'm predicting super cute pictures to come after Sunday ; )


  1. What a week you've had! So sorry. Amber's face is "telling". I hope the rest you have planned for this weekend is one plan that doesn't change on the fly.

  2. Luke and Schuyler...I'm praying right now for your meeting this morning..always asking God to guide the way for Ambers care. Hope Sweet Pea is feeling much better and stronger today! Will look forward to hearing how your meeting go today. Love you all so very much! ♥