Good news

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.

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 :-)

Hospital Sweet Hospital

------ 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.

Home Sweet Home

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.

Baby Wolverine with PMS

Well, what else to say and think but to try to be positive...

Shyanne officially diagnosed with 22q13 Deletion / Phelan-McDermid Syndrome (PMS)...one of the signs of this very, very rare syndrome is that she could have a high tolerance for pain. That's why I put baby Wolverine. If you know X-Men, the superhero Wolverine has a very high tolerance for pain.

More information can be found at:

www.22q13.org

Just click on the MEDICAL tab or the FAQ tab and it'll give you a very good idea of what we'll be going up against.

300 diagnosed cased WORLDWIDE.

Updated photos of the kids

Out of PICU

Shyanne was moved out of Pediatrics ICU back to Neonatal ICU. Amazing how these little kids recover so fast. She only has 3 tubes in her now.

Our kids really want her home. Bennet especially is having a hard time with this because he misses her so much. He's cried every single time we leave the hospital. Got a real tender heart.

Bennet and Tyson started soccer. Tyson's team is short a few so Bennet got to play up in Tyson's age bracket. Bennet scored the first 2 goals for the team. Tyson then scored the last 2 goals on the team. I'd like to think that they're going to be soccer pros but they're still young and every dad has dreams of his kid going pro :-)

Recovering well

Resilient kids...most of them are. I saw her twice yesterday. The first time was in the morning. She responded to my finger when I put it in her palm. She grabbed it and held on. That was nice. She had been inactive since Tuesdays surgery. I was jealous because Jeannine visited her around lunch time and she said Shyanne opened her eyes for her.

We visited her again in the evening with Bennet, Brooke, and Jovee. They're all so excited about their baby sister. They really, really love her. Bennet got emotional and cried because he's worried about her. Brooke and Jovee are very proud of her. Lots of lov'in helped Jovee recover from her neuroblastoma surgery and lots of lov'in will help Shyanne recover fast also. This time the love will be magnified because we're here in Spokane with close family and friends whereas Jovee's surgery was in Seattle.

One of the companies that I make and install signs for gave the kids a goodies bag that consisted of Pez, popcorn balls, and SpongeBob Cheez-It's. That was really nice. All the agents also pitched in to give us a very generous gift card to Fred Meyers and Wandermere Village Cinemas. So very uplifting to see the kindness of people.

The Clayton Ward, like always, was just awesome. So many ladies brought over frozen dinners, food, desserts that should last us at least 2 weeks. Just amazing.

The doctors did some tests on Shyanne's chromosomes and genes. Waiting for results, probably Monday.

Shyanne and Jovee

Guess I should start a blog for Shyanne also now, huh? So the surgery was successful. Yippeee! The nurse and anesthesiologist grabbed her at 7:30 am...they kept us updated every hour and a half and finally we got to see her in ICU a little bit after 1 pm. It was sad to see her all in tubes, wires, cables, etc...At one point right when we walked in, she had so many tubes, wires, cables on her that we saw more of them than her actual body. Just got to be thankful that there's all this technology to help her recover after a major open heart surgery.

The kids and I went to visit Shyanne tonight. She's pretty out of it. Touched her fingers, toes, and head but she was unresponsive. Nurse Kim is taking care of her tonight. She seemed to be a really nice and caring nurse. Nurse Kim says she's doing good, everything, all the vitals are normal.

Got through this round...waiting for her to heal to so we can fight the next round of anomalies, whatever it is.

Jovee's tumor resection was similar to Shyanne's open heart surgery. A lot of the same tubes and lines. Geez!

Two schools of thoughts now: 1) I can be grateful that everything went well with the surgery so far or 2) I can be bitter about seeing Shyanne go through all this.

Everyone, from Jeannine's family to the ward members have been, like always, totally awesome and supportive. Wanda Day and Sheri McCullough have brought dinner over the last couple of nights. And mom Welchly also. We've got plenty of food leftover, plentiful to feed 5,000. I need to go on a diet. Well, actually I've been on a "stress diet", been too stressed to eat.

This is difficult...As Secondhand Serenade sings, "I'm wearing thin down to the core." Trying to stay strong cause I'm papa bear and I'm just supposed to be strong but this is difficult. I think what's been really the hardest is not being able to hold her or have her respond. It'll be at least another week, they say, that she'll be in PICU and then she will move back to NICU. Jeannine and I are planning on 3 to 4 weeks before we'll be able to bring her home.

Nurse Brenda

Took this picture last night at Sacred Heart NICU. This scene is all too familiar...

The nurse that prevented Shyanne from coming out...we were / are very thankful for her. She knew that something wasn't right about Shyanne but couldn't pin point anything. Call it mother's intuition. Finally Shyanne's heart rate just wasn't normal, going at around 140 beats per minute so she jumped all over that. Anyways, because of her intuition, the doctors looked into doing more tests to eventually find out about the heart.