Monday, December 28, 2009


So we brought Shyanne home on the 23rd, spent 24th with the the whole family at grandma and grandpa Welchly's, spent Christmas day with our little family Christmas morning and then Christmas afternoon/evening with Renee and her family.

Brought Shyanne back to the hospital Saturday the 26th, yesterday evening.

The respiratory therapist came over to our house and gave us more training on the oxygen reader machine. Jeannine was frustrated with it because it kept on beeping and beeping and beeping so we didn't think Shy's #'s were right. Well, they really were off but rightly so.

The RT basically helped verify Shy's levels and said, yes, we should contact Shy's pediatrician and then bring her back to emergency.

Shy's heart beats per minute was up to around 150, her respiratory rate was above 80 (got to 112 per minute when we arrived at the emergency) her oxygen was dipping lower and lower to around 70% while the RT pumped her oxygen intake to 1.5 liters per minute.

So I spent the night Saturday night, Jeannine is there tonight, and I still can't sleep when I should be because I'm not at the resort.

Our friends from Camp Agape cancer camp came to visit Jovee and the kids. George and Desi. They don't have any kids right now, just able to go around and visit cancer kids and families in the past and also tour the country. After they left our house early Sunday morning, they were off to go hike and back pack somewhere in Canada. They're really awesome with the kids and will be awesome parents as soon as they decide to settle down and bring munchkins into the world.

Anyways, back to Shyanne. Well, I should get back to Jovee for a little bit. Sometimes I think she's feeling left out because we were just so focused on her the last few years. Now she's started pre-school, gained a lot of independence, and has to grow up a little bit faster because of us having to take care of Shyanne. Jovee still has that neuroblastoma spot and gets restaged in February. No, I don't ever forget about her. I remember her cancer every single day. Her droopy eye from the Hoerner's syndrome, the long scar from the surgery, and her champion spirit remind me every day that she isn't out of the wood works with the neuroblastoma cancer. She's just had to take a little back seat because of Shyanne's conditions. I was reminded again of the tough battle of cancer because one of our friends, Parker Brown, 8 years old, just passed away of leukemia. So tough to see good families having to bury their son. Really really tough.

Anyways, we still ask in every prayer to "bless Jovee and to have the neuroblastoma cancer never ever come back."

As far as Shyanne, Dr. Garabedian the younger, I really like him, came in and talked to me today. He gave me the reality talk. The reality talk went a little like this:
Do you do the surgery to try to correct the serious issue of the pulmonary stenosis, knowing that Shyanne already scars easily and put her through another open heart surgery and complications OR just give her the best quality of care possible and let her body run its' course and however long she lives is how long she lives....what to do?????????????

Option # 1: If we did absolutely nothing, take her off the oxygen and meds and just let it be Shyanne would probably not have very long to live. I only say this because reality is the heart and lungs of an infant can tick only so long at 150-180 beats per minute, taking 80-100 breaths per minute, at the low oxygen rate that her body dips down to...she would only last so long. How long? We don't know...but probably not very long....NOT A GOOD OPTION. Duh!!!

Option #2: Keep doing what we're doing right now. They're bumping up her oxygen intake to try to maintain. X-Rays show fluids in her lungs (not good) so they're giving her Lasik's to help empty the fluids. Oxygen in lungs plus pulmonary hypertension plus her cough that no one can figure out (not a bacteria, not a virus) (plus her unknown 22q13.3 syndrome) = not good. Lots of hospital stays and lots of worries. I guess that's where we're at right now. No surgery yet on the pulmonary stenosis but if the bumping up the oxygen and more Lasik's just maintains her and not really helping her then the surgery to try to correct the pulmonary vein will have to be moved up from early spring to very soon. Another open heart surgery.

Option #3: Another open heart surgery right now to try to correct the pulmonary stenosis. No guarantee there that this will fix her rapid respiratory rate, resiratory issues, and lung issues. I don't think this surgery will make any improvements. The first open heart surgery, TAPVR, only took care of 1/2 of her congenital heart defect. But the first surgery also wasn't fully successful because it caused the vein to scar (which we know is already abnormally thin now). The way Dr. Garabedian was talking with me today, the stenosis surgery is only a temporary band aid. Do we put her through another open heart surgergy to maybe get an OK result?????????

She still has to have surgery on the kidney's to correct the hydronephrosis.

Decisions, decisions, decisions........I should be on antidepressants like Cymbalta or Paxil (used to be a pharmacy tech way back in the early days - only reason why I know those names :-)

Man, she sure is cute when she smiles. They're very rare (sometimes, because of her syndrome, I don't know that she knows that she is smiling ) but when she does, even if it's a courtesy smile, just melts my heart.

I have much to be thankful for.

Tuesday, December 22, 2009

Heart Venogram

Heart venogram is what she's really doing today. Out of our hands but I guess it's always been out of hands. So the pulmonary vein is restricted but don't know how restricted. Cardiologist says if it's really restricted than Shyanne has maybe a couple of years to live. That's worse case scenario.

She's sedated again and on a breathing tube and ventilator.

Waiting for procedure to be done and results.

We're tired.

Thursday, December 17, 2009

Just a few issues with Shyanne

Ultrasound before birth showed urine back up in both kidneys, left more than right. Hydronephrosis.

Born on 9th, open heart surgery to correct TAPVR on the 15th.

Confirmed 22q13.3 syndrome few weeks later.

Went back for echo check up of the heart, showed scarring in the pulmonary vein. Dr. Burg thought had to do another open heart surgery on the scarred vein. Didn’t have to.

Lungs very not clear, coughing really bad. Not whooping cough, pertussis. Not able to keep any formula down. Had to bring her back in emergency.

Very low muscle tone, very floppy. Not very steady eye contact, still wanders a lot. Has not turned over on her stomach by herself

Chest caved in just a little bit.

Kidney’s still holding urine.

Pulmonary hypertension. Pulmonary veins may have a lot of restriction issues.

Staphh infection of the airways / bronchial tube. Lungs had samples of some blood, not bleeding lungs though.

Lungs filled with abnormal amount of fluids.

22q13.3 syndrome could all be relating the kidneys, heart, and lungs together.

On steroids, antibiotics, albuterol, and other meds.

Just started wearing ABI vest, which thumps against chest to clear out lungs. Treatment is 4 to 5 times a day.

Today, just did X-Ray of chest and lungs and ultrasound of kidneys and abdomen, waiting for results.

Tuesday, December 15, 2009

Lots of tests

Yesterday Shyanne had to be put out; had a breathing tube and on ventilator. She did good.

Tests that needed to be done required her to be very still. Had an echo of the heart and lungs and a bronchoscopy.

Waiting for results to figure out what the next plan of. Attack.