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.

Friday, November 13, 2009

Thursday, November 12, 2009

Good check up today

22 inches long, up 3 inches from birth
10 pounds, 4 oz, up 3 pounds from birth

Overall it was a good doctors check up visit today. Got 3 shots today, immunized. Dr. Bennet is awesome. Really takes time to listen, to explain things easy, and he really cares about Shyanne (Jovee also, they both see him.)

2 nights ago Shyanne slept from midnight until 6 am. Wow, that was amazing. She had been getting up every couple of hours for feeds. That was getting tiring. But that's what parents do when you got newborns, whatever it takes to take care of them. Jeannine's been getting up more than me to feed her. She's an excellent mom to the kids.

Monday, November 2, 2009

Complete Waste of Day

So Jeannine and Shyanne left the house at 10 am this morning. I met up with them later in the day after doing some work.

Shyanne was prodded and poked twice in order to get an IV started. Hate seeing my baby get poked but it's for the eventual good of her. So after all the preparation for the renal (kidney) ultrasound, she started the test at 2:30 pm. The ultrasound tech said it would last approximately 62 minutes. During the middle of the ultrasound he would inject some Lasiks, a diuretic, into her to make her urinate. The ultrasound would track the flow of her kidneys...The reason for the renal (kidney) ultrasound is because it's a very good test for showing hydronephrosis (suggestive of obstruction or blockage of the kidney).

Anyways, after the hour long test, we headed to Dr. Starr, the pediatric urologist. In short summary, she just told us that the ultrasound tech did not inject the Lasiks into her at the half way mark. The whole reason for the ultrasound today was for Dr. Starr to see her kidneys and kidney flow on ultrasound. No Lasiks = No results. Stink!!!!!!

The same machine and room that Jovee gets her MIBG scans for her neuroblastoma was the same machine that was used for the scans today on Shyanne. They're a lot closer than they know. When the girls grow up, they'll definitely have lots to talk about. Pictures above are of Shyanne on the machine that Jovee has spent many hours on for her neuroblastoma scans.

One of our very good friends is in the hospital at Holy Family because of blood clots in his lungs. I thought that righteousness shielded you from trials but I guess not. He and his family are just amazing, righteous, kind, and awesome people.

Tyson, Brooke, and Bennet are starting chess again. Their first chess tournament is this weekend. Tyson beat me 2 games to 1 yesterday. Dang it, I can't stand losing to a 10 year old. But I'm glad it's to my 10 year old.

Thursday, October 22, 2009

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.

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

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.

Tuesday, October 6, 2009

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.

Wednesday, September 23, 2009

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) 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:

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.

Tuesday, September 22, 2009

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 :-)

Saturday, September 19, 2009

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.

Tuesday, September 15, 2009

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.

Sunday, September 13, 2009

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.

Saturday, September 12, 2009

Update on everything

Nurse Brenda, Bennet loves swimming, Shyanne in her oxygen tent, Jovee at the bowling alley, Jovee in a tree, Shyanne's first few minutes...

Good news, bad news, indifferent...

Jovee's scans were on September 1st and 2nd, re-staging updated scans. Everything on the CT and MiBG came back stable. Yippeeee.
We had been concerned, like all neuroblastoma parents are, about this round of testing because Jovee had been complaining a bunch about her legs and stomache hurting. A neuroblastoma parent thinks what if it's the neuroblastoma coming back again? Anyways, everything still stable...

We welcomed Shyanne Grace Lim into our family on 9-9-09 at 5:55 am. The delivery was quiet crazy and intense. Jeannine starting having contractions at 11:16 pm. They were 4 minutes apart. Jeannine called to see if she should go in. Hospital said it's up to her. So Jeannine started walking around the house a bit and the contractions started going away. She opted to wait a little bit longer but then the hospital called again and said we should probably come in to get started on some antibiotics for the baby.

Left the house just before 4 am, Jeannine's water broke at 4:15 am just when we crossed the Wandermere bridge, arrived at Holy Family and after preping her she was checked again at 4:45, dilated to 2 cm. No big deal...nurse Brenda checked her again an hour later and Jeannine had dilated to 7 cm...last week Shyanne was head down but this time she was breech...nurse Brenda also felt the umbilical cord at the bottom of the cervix so it was dangerous for the baby to come out. Jeannine's body pushing Shyanne out and nurse Brenda pushing back to prevent Shyanne from coming out because of the dangerous location of the umbilical cord. Anyways, it all happened so fast...Brenda said to me "push the emergency call buttom"...she said, "I need a doctor in her right now!"...Doctor Brash came in, assesed the situation and said we need to operate, need to do a crash C-Section...they took Jeannine out of the room, down the hall (with nurse Brenda's hand still inside of Jeannine preventing baby from coming out), into the operating room...Doctor Brash said I can't come in...what????...anyways it all happened really fast and I just went back into the room, started to cry a little bit out of fear for Jeannine and the baby...

Anyways, 10 minutes later nurse came back and said everything went fast but fine. Wheeeewww!!

Jeannine is recovering. They had to cut her bigger than with Brooke and Bennet because of the emergency situation but she's recovering.

Shyanne had some breathing issues. Heart rate was going up around 140-160 beats per minute. She had to be in an oxygen tent (oxygen bubble). She had to get transferred to Sacred Heart Hospital via Medstar (ambulance, not helicopter). She's got several anomalies but the main issue is TAPVR, a heart defect.

Surgery is going to be most likely Monday afternoon.

Going through a lot of the things that we've already been through with Jovee's cancer. A little different but still emotionally draining. She's just days old and so fragile.

1 in 15,000 get TAPVR. Cardiologist said to me early, "Neither you or your wife did anything to cause this...". I really wonder about that statement.

Thursday, April 23, 2009

Tuesday, April 7, 2009


These are my nerds. The weather has been fantastic the last couple of days, good enough to be in shorts.

Saturday, March 28, 2009

More Chess

Bennet took 3rd place out of the 1st graders, Mikal scored the biggest upset, and Tyson was the Kindergarten - 3rd grade Grand Champion. They did good today.

Monday, March 23, 2009


Tyson and Bennet both took 2nd place in their classes at the last tournament. They like playing chess. It might seem boring but it's actually really competitive and fun to watch. Their trophies were these pretty cool bobbleheads knights because it was at a school where the mascot is a dragonslayer. Cool for them.

Thursday, March 19, 2009

Brooke Ice Skating

Brooke's taking ice skating lessons at Eagles with Sarah and Hannah...just loving it. Last month Bennet finally qualified for going to the state Chess championship tournament...yes, I have chess nerds. It's really good for them because it teaches them to think ahead.

I need to post some pictures...haven't lately.

Monday, March 16, 2009

Little more stuff...

Little bit about what's going on in the family. I need to take a picture of Jo with her new glasses that she doesn't wear.

Tyson and Bennet's 1st year of wrestling. They're not doing that bad but still getting whooped on by the more experienced wrestlers. Bennet wants to quit but we won't let him. He's not doing that bad, just when he goes up against more experienced guys he loses. Same with Tyson. Tyson has more fun wrestling but Bennet's getting there.

Brooke is taking ice skating lessons with Sarah and having a great time.

Thursday, February 5, 2009

Good results for MIBG Scan

Jovee and Brooke were playing outside and Jovee decided to be brave; stood on top of one of the snow banks in our front yard then went a tumbling down. The result: some good scars to show.

Restaging Study, compared to 11/5/08

A whole body nuclear tumor localzing scan was performed.

FINDINGS: There is mild increased MIBG localization in the left supraclavicular and left mediastinum, stable to diminished compared to the previous MIBG study.

Scan of Abdomen and Pelvis: No abnormal MIBG localization.

IMPRESSION: Stable to mildly improved compared to 11/5/08 study and no new areas of abnormal MIBG localization.


Jovee went to the pediatric optometrist and has to wear glasses. Her left eye is 20/40 and her right eye (where it's related to Hoerner's syndrome) is 20/50.

Wednesday, February 4, 2009

Good results for CT Scan

The CT Technologist was suprised the we didn't sedate her for the CT Scan. After the scan was done, she asked, "Is she always this perfect for the scans?". Jovee has always been cooperative and submissive when she has to do the CT. Yes, she's always perfect.

Not so fun getting blood draws.

Good results from the CT Scan, now waiting for the MIBG Scan that Jovee took today. Usually, if the CT's are good then the MIBG's are good. We're hoping.

Comparison from 11/4/08, 8/13/08, 4/8/08

CHEST FINDINGS: A 1.4 x 1.0 cm upper left paratracheal nodule previously measures 1.4 x .9 cm. A .0 x .7 upper right paratracheal nodule is also unchanged. The lungs are normal. No osseous (bone) abnormality.

ABDOMEN FINDINGS: A 7mm faint, ill-defined enhancing focus in the liver within segment 5 is unchanged. The liver is otherwise normal. The spleen, pancreas, and adrenals are normal. The kidneys and proximal ureters are normal. The colon and small bowels are normal.

PELVIS FINDINGS: The iliac and femoral vessels are unremarkable and there is no pelvic or inguinal adenopathy. No osseous abnormality. The colon and small bowel are normal.

IMPRESSION: No change in the appearance of the chest, abdomen, or pelvis.

CT Scan of soft tissue neck with contrast:

In the region of the upper mediastinum just to the left of the esophagus there is a enhancing 15 x 10 mm nodule which is unchanged from prior chest CT Scan.


Stable appearance to the enhancing nodule in the upper mediastinum just to the left of the esophagus.

Stable appearance to the left supraclavicular / lymph node Level IV soft tissue fullness.
Thanks for your prayers.

Sunday, January 11, 2009