Tuesday, June 19, 2012

June 19, Just came out

She came out of the procedure well.  They were able to test all the pressures in her heart and lungs as needed for the transplant.  She did not have any of the complications they were preparing for, ie blood clots, arrhythmias, etc.  They did not need to put her on the echmo.
That is how the test went.  As for her right now, that is different.  She is grumpy, and crying. A few tummy aches, and on oxygen. Still hasn't eaten today, but hope she will soon.  Drs are watching her very close for complications.  Dr Yeh, Heart failure specialist, came in and explained her status.   After talking to him and how much she has dropped, I wouldn't be surprised to see her on mechanical support (Berlin Heart or Thoritec or Echmo) within a week or 2. Hopefully not though.  They act much more confident about the Berlin Heart than they did 6 years ago.
Met with the genetic councilor, Kyla Dunn.  They have sent off Lindsey's blood to be tested against about 35 different known genes that cause this heart disease. It will still take till mid-August before results are back.  They are also going to test our kids against environmental issues that could cause this disease. If our kids have Cobalt, Lead, Mercury, Arsenic, Copper, Selenium, Chromium, Antimony, Beryllium, or other 'stuff' this could cause the disease.  We are getting water tested as we speak. 
Stacy is doing great.  She is strong and focused.  I have had tough time this morning.  Hard to see my little princess feeling so bad.  I guess I'm trying to prepare for  the ugly stuff to come.
Talked Catherine Stucci, the LDS Chaplin.  She will be coming by today for a visit.  We sure like her.  Mary Burge, our social worker is going to work for us for housing. Bob Paugh brought dinner to us last night, very nice.
Sierra is with Garrity and Seth and has a orthodontis appointment tomorrow in  Ontario.  Other kids are in Utah.  Renee and Randy will bring Gage and Sierra this weekend.  They will have heart appointments next week.  They will be increasing Gage's meds for his heart enlargement.
Hunter and Megan will be staying in Utah for a while until we can figure this out.

4 comments:

Anonymous said...

What a brave brave girl Lindsey is. We are soo happy that there weren't any complications to the procedure. We love you all!! and are in our prayers!
Emily

The South Pasadena Dornys said...

So glad the procedure went well - Lindsey, you are amazingly brave! Thanks for the updates and you all continue to be in my family's thoughts and prayers.

Becca Gilbert said...

Good Job Lindsey Lou!! I'm so grateful Everything went well!!

Andi (RrlScrapGal) said...

So very glad the procedure went well and she did not have any of the 'bad' things they were looking for. Big sigh of relief...
Hey, I do remember hearing that the Haines does have high Selenium, it was talked about at a cattlemen's meeting and its effect on cattle. Praying for all of you and Lindsey. And so glad to have a great support down in CA. People are truly wonderful.