OK, here's the run down, latest and greatest.
Jeannine is bringing Shyanne home tonight.
There is still scarring on the vein that they operated on, will only heal with time. Not much to do about it right now.
Heart still beating fast but able to reduce the heart rate with meds and tampering with formula.
No open heart surgery! Yeah!!!! Woot woot!!!! The "good" cardiologist said we'll just keep a close, good watch on the heart, pulmonary vein, and lungs.
The "bad" cardiologist is on my X list. Basically she jumped the gun, traumatized us. "I'm really concerned", "This isn't a good thing", "We need to operate soon to reduce the scarring", "Success rate isn't very good even if we operate, chances of scarring will happen again - maybe 3 to 5 years". So all of her diagnoses is out the window.
Yes, still have to watch Shyanne closely but no surgery. That's all we wanted to hear.
Thanks for everyone's concerns and wanting to help us. Sorry if we worried anybody because of the "bad" cardiologists. Thanks for the love and concern.
Wednesday, October 21, 2009
Jeannine spent the last Tueday night so I have tonight, Wednesday nights', shift. So far, right at this time, no open heart surgery to repair the scarred vein. We're just watching her closely. She's doing pretty well. Has eaten and gaining weight. Important that she's keeping the formula down, not aspirating.
Not too much new information right at this time.
No, my kids aren't brainwashed to like the Denver Broncos. They have their own free will to like whatever team they want to like. As long as it's the Denver Broncos :-)
Tuesday, October 20, 2009
------ Shyanne and I at the hospital today ------
Well, I'm not sure if our first home is the hospital or our actual home home in Deer Park.
Just a check up to follow up on Shyanne's heart surgery turned into an emotional and draining day.
Dr. Burg, the cardiologist, met with us and told us she's very concerned with the EKG and ECG that they did on Shyanne. She bluntly put it to us that the vein that was operated on scarred up and that the right side of her heart is strenuously working to keep up with the restricted flow of the oxygenated blood. "This is very serious and I'm very concerned...probably need another open heart surgery".
Jeannine and I just shut down after that and just cried and cried and cried...what else are you supposed to do after just going through one open heart surgery, just bringing your baby home, and hearing that she'll probably need to do it again and the chances of it scarring again after that is very likely.
Anyways, after all was said and done and they did an X-Ray, Shyanne is admitted again to the hospital, Jeannine is staying the night tonight and they're just going to watch her closely. No surgery right now. They're giving her Lasik and Prevacid because there's concern with the lungs retaining too much liquids and possibly formula because Shyanne keeps throwing up formula. If there's liquid in the lungs, the heart will have to work harder and with the scarring of the vein and the heart having to work hard already as it is, they just want to keep a close eye on her. So, indefinitely staying at our home again.
Tuesday, October 6, 2009
After tirelessly working to get Shyanne to drink the requirements that the doctors want to meet the requirements to come home...she did it! The last couple of days she's been drinking out of the bottle real well so here we are, everyone, at home. It's been a month. Last Friday, Brooke and I were out of town, Tyson, Bennet, and Jovee were at Sue's, Jeannine was home alone, and Shyanne was at the hospital. We've been separated like that for the past month but now it feels so good to be all together again. Nothing like the priceless time spent ALL together as a family.
We have a ton of follow up visits the next several weeks for Shyanne but I'm too tired to think about all of them. Just happy to get back to somewhat of a normal routine.
We told the kids that Shyanne would be home Thursday by the time they get home from school and Bennet said, "I'm going to run so fast off the bus to see Shyanne". It was very difficult for him to be shut out of ICU and not see Shyanne because the hospital had the no siblings rules because of flu season. They all gave her lots of lov'in tonight when they saw her. We suprised them one by one by telling them each to go out to the van to help get groceries. Brooke had just a huge smile on her face when she saw her baby sister.
I know lots of you had Shyanne and our family in your thoughts and prayers. Thanks a kajillion (like always). Tomorrow, Wednesday, the hospital had it scheduled or Shyanne to get a G-Tube and that would have put her out another couple of weeks before coming home. But your thoughts and prayers had lots to do with Shyanne eating well and being able to come home. Thank you.
Shyanne's syndrome is 22q13.3 but she is unique because part of chromosome #12 duplicated itself and attached itself to chromosome #22. The geneticist met with us today and said she knows of no child with the #12 a part of #22. Shyanne truly is one of a kind! I keep thinking that she'll have some awesome, crazy X-Men mutant power that will save all mankind but.....probably not likely.