Loma Linda University Childrens Hospital

Wow I took Zachary for a second opinion on the Cleft Craniofacial Clinic. The Choc one I didn't care much for the ENT and Dentist.... So when I got to Loma Linda Clinic I was very impressed, Dr. Elmendorf was wonderful!!!! He asked if I wanted to see any other people today since I was there. I stated yes, I waited there for 5 hours and got to see the speech therapist and also the Genetics doctor. I was now to wait for my report and go from there. I had finally received my report and needed to set up my doctor appointments.. I had spoken to Jennifer several times and she had relayed to me that I would need to cancel my doctors with the other clinic to join their clinic. Then I had spoken to Kathy the nurse for the clinic who was suppose to set up my appts. I had spoken to her and she stated that Dr. Elmendorf was getting ready to go on vacation and she would need to check with him and get back to me. So I waited and waited and then I called back and then I waited and waited. I never rec'd a call so I called Jennifer and left her a message to call me or have Dr. Elmendorf call me back due to I needed to make an appointment and couldn't get Kathy to call me back. Amazingly nobody called.. So I started calling around and left message with Kathy for Dr. Elmendorf. I was upset because all this time she hadn't called me. When I stated I had been waititng for her call to set up the appointments she stated she had been calling me and calling and has documentation that every time she has called me it is busy. I verified # and it was correct. There is no way that one person can call me for two months and always get a busy signal on a cell phone when every other doctor and person who calls me never has a problem. I explained to her I have a cell phone it is never busy. She stated well what do you want now. This set me off obviously and I left message for Dr. Elmendorf who amazingly didn't return my call. I called back a couple days later and spke to Kathy again and wanted to leave a message again for Dr. Elmendorf to contact me. She straight out told me she would take the message but he wouldn't get back to me. I left the message anyway. I emailed Jean Fankhandel to forward my email to Dr. Elmendorf thinking he wasn't getting my messages.

Then Lynn Karmen called me back. She took my complaint and then took the information for Accent Care so she could get my sons speech therapy going in the mean time and she was suppose to contact me back. In the next several weeks I left 4 messages for Lynn with no return call.

Suddenly, I get a call from Jean Fankhangel stating that Dr. Elmendorf had sent me a letter stating since the our relationship was compromised Zachary would not be a good fit for their clinic. I didn't receive the letter so Jean certified it to me.

Two weeks passed and no word from Jean I called her Friday night the 27th and it stated she would be out until the 30th. Amazingly, no word from Jean, so I called her again on December 1st figuring she was probably busy with holiday and all. She answered and stated that Dr. Elmendorf stated there was nothing he could do.

NOW IS IT NORMAL PRACTICE TO MAKE A CHILD SUFFER BECAUSE THE STAFF DOESN'T DO THEIR JOB. IF THE PARENT COMPLAINS THEN THE CHILD HAS TO SUFFER. DOES IT TAKE 4 MONTHS TO GET A PERSON TO CALL YOU TO MAKE AN APPT???? AREN'T NURSES AND DOCTORS THERE TO HELP CHILDREN WHO HAVE SEVERE PROBLEMS???

WHEN THE HEAD OF THE NURSING STAFF STATES SHE WILL TAKE CARE OF YOUR SITUATION AND GET YOUR SON SET UP ON SPEECH THERAPY. IS IT NORMAL PRACTICE TO NOT DO IT AND NEVER CALL THE MOTHER BACK????

IS IT NORMAL PRACTICE FOR A NURSE TO STATE THAT SHE HAS CALLED A CUSTOMER FOR 2 MONTHS AND IT WAS ALWAYS BUSY AND THROW IN RIGHT AWAY AND I HAVE DOCUMENTATION, WHEN IT IS A CELL PHONE AND WOULD ROLL RIGHT TO VOICEMAIL???

IS IT NORMAL PRACTICE TO DENY A CHILD MEDICAL SERVICES BECAUSE YOUR STAFF DOESN'T DO THEIR JOB.

IS IT NORMAL FOR A DOCTOR TO NOT EVEN RETURN ONE PHONE CALL TO A PARENT BUT THEN TURN AROUND AND GET RID OF HER CHILD WHEN HE OBVIOUSLY NEEDS MEDICAL ATTENTION???

THE ONLY ONE WHO LOSSES IS THE CHILD!!!! NURSES AND DOCTORS TOOK AN OATH TO HELP PEOPLE NOT HURT THEM!!!!!

Eye Doctor

We went to the eye doctor for Zachary for the first time in November 09. Zachary was such a big boy and I guess because he is so use to the doctors that he didn't cry. We were deciding whether to just put the eye drops in the eyes to dilate them or to put the anesthesia in first and then the eye drops. Usually with kids once they get the first one in they can never get the second one in. Well the doctor had great success!! He put the anesthesia in and the eye drop to dilate the eyes. Zachary did not cry at all but did ask for his candy. I had promised him 2 candies if he did good.. We found Zachary has a stigma and would probably need glasses later in life or could possibly fix itself.. Who knows... We will see...

Sorry it's been so long

Since I last posted Zachary's Main Doctor has said that since the test he ran shows everything okay with Zachary there is no need to take action on his hernia. It is so small so probably doesn't bother him. If it should start to bother him then he would do surgery..

Zachary was sick mid November. He came down with a cold that lasted about 1 1/2 weeks. We got antiobiotics that seemed to take a while to kick in. But either finally did or the virus ran its course.

Zachary also has had his flu shot and the first series of the H1N1 we go back December 18th to get the second one. He didn't get sick and didn't cry. He is a tough little boy. But he did want his candy after of course. He can't get the nose spray because it is a live virus and if he were to get it it could possibly kill him. The live virus is actually putting a bit of the swine flu in you. Zachary has to get the shot because that basically is dead virus...

Ultrasound

Wednesday we went and had an ultrasound for Zachary. Zachary fasted for 12 hours the night before and pee'd at 7:15am. We went to the ultrasound at 8:15am and started the ultrasound. We got most of it done when she started to do it on his bladder. She said he has a full bladder and I would need to have him go potty. So I took him in the bathroom and tried everything.. Put cold water on his hand... flushed the toilet...... took his pacifire away from his so he would cry and no pee pee. Then we went outside and I gave him my cell phone and keys to play with and took them away thinking that he would cry and make him pee... Well NO.... Finally around 11:45 the Tech came and said to go and come back at 2:40pm... So we left and I gave Zach a bottle and he pee'd at 12:40 and I put down for a nap... We got up at 2:10 got ready and went back to the doctor. The tech stated his bladder still was not empty. I found this very strange and apparently she did too. But she couldn't say what she thought was wrong. So we just wait for the test results. Hopefully he psyched himself out because of the visit and that is all it is.. Well will see sometime next week

Sick??

Lil Zachary was sick... I have been giving him this nose spray (trial for 2 weeks) that is suppose to strengthen his muscles in his throat and I think with that it kicked the colds butt right out of him.. YEAH!! It was really quick.. One night he was up and down crying and crying and then the next night he was fine. Very strange, but I am thankful we didn't have to go to hospital...

Sick or not??

Zachary seems to be coming down with a cold. Lots of sneezing and boogers... We will have to see how he is tonight.. Hopefully he will kick it and not get fully sick....

Hernia??

I have noticed several times this little bump that appears on Zachary's tummy. I always just let it go not thinking it was anything. Recently, Zachary has been grabbing his tummy and his back near his kidney's. While we were at the cardiologist the other day I was calling the doc to make an appt because of Zach grabbing his tummy and back. I showed my mom the bump and she said it looked like a hernia. So I made an appointment for after the cardiologist and went right away. The doctor said it does look like a hernia. We needed to do an ultrasound to verify for sure if it is or not. We set up the appt for Sept 30th. It could possibly need surgical repair and could not. We don't and won't know until after the ultrasound. Stay tuned..

Zachary's Echocardiogram

September 16th

Zachary, Grandma & I went to see Dr. Chang, Zachary's cardiologist. They did an echocardiogram to see if his ASD (the hole in his heart) had closed. They couldn't see it again which is good news. They did however say that now they will be watching his left pulmonary artery. It is narrow due to the heart surgery from the vascular ring. So it needs to be watched because there is more flow from the right pulmonary artery than the left. We will go back in 6 months and continue to monitor Zachary's breathing and also his activity and stamina.

The Heart Walk 2009

The heart walk went awesome this year!!! There was a change that we walked at the old El Toro marine base. It was all good except the way to go out of the place. It took us an hour and it was not controlled at all!! Hopefully next year it will be....

More updates

It has been almost a month since I have been on. Zachary's fungus seems to be gone after a big dose of fungs meds with steroids in it. Finally went away now we are watching his nail to make sure it is completely gone.

We are set to start with the school district in September for all school at home and the therapists. I have another company that will hopefully be coming in anyday now for intensive speech therapy.

The Bowlathon went great!!! We raised $1100.00 for the bowlathon to go The American Heart Association.

Zachary's echocardiogram for the whole in his heart has been pushed back until September. So we will wait another month to make sure his hole is for sure closed.

Zach's foot continuing saga

Zachary's fungus has seem to hold on forever.... We went back to the Doctors and they gave him a different cream with a steroid in it.. I don't know if his body wasn't allowing the medicine to work or what. The Doctor stated it usually works with no problem, but this time it wasn't and seemed to be getting worse.... So now this new medicine with the steroid seems to be working so far. It is looking better.. We will see.....

Zach's Foot

We have been fighting a fungus on Zachary's foot for 2 months... First we did the Lotrimin and then the Anti-fungal prescription. But nothing seems to be working.. The doctor is worried and has given us an anti-fungal cream with a steriod in it.. So hopefully this will work otherwise, I don't know what they will do... I was told to monitor his foot and toe closely. She stated it didn't look good so we need to watch it....

July 1st

We went to the Nutritionist to keep track of Zachary's height and weight.. We were sent there early on due to Zachary was off the chart with his weight and height... I mean off the chart like in a really bad way.. His height and weight didn't register for his age due to he was below in everything.... But we are creeping back up and now in the 10th and 25th percentile. We are getting ready to transition him from whole milk to 2% percent milk and hoping this will not produce any problems with his weight... Time will tell.....

It seems to be getting better. The Regional Center has postponed Zachary going to the school District at least until September until Summer is over.. His Immune System still will not tolerate being around children. In the meantime I need to find a respite care facility that will work with the state to keep my respite care worker Ruby with me. Ruby has been with Zachary basically almost since we started.. We went thru probably 6 people before we came to her. Some of them I wouldn't leave my son alone with.. I was scared and found out later I should have been. I need to find a speech therapist to come to my home so Zachary won't get sick. Zachary needs Medical Speech Therapy that he can't get in the school district. I have contacted the people associated with my insurance blue cross but they don't seem to come to the home. So I still need to search. I will search everywhere if it means eventually my son will talk. Zachary is wonderful and hopefully will eventually be able to talk.. The journey never ends.. I will always continue to try and find the best... Money does buy alot.. But true sincerity and hardwork does buy alot too. Zachary is a good buy and God is watching over him...

Loma Linda University Childrens Hospital

On June 5, 2009, we went for a 2nd opinion to the Cleft Craniofacial Clinic. There we met Dr. Elmendorf. He was wonderful with Zachary and looked Zachary over from head to toe. I was very impressed. He went over every bit of Zachary's body. Now this clinic is for Cleft Craniofacial and he went over his wholeeeeee body. Explained things of what he had and things to watch over. I really liked him. I was referred to him by Zachary's Endocronologist at CHOC. They were med school friends.

He explained many things..... My biggest concerns were Zachary's speech and eating.

1st... Speech... I thought if Zachary's soft pallot and submucosal cleft were fixed it would enable Zachary to start talking. Well I guess that is not the case. Zachary's issues are complex which I kinda already knew but he explained it better to me. It is a complex situation with Zachary neurologically, structurally (deformity in his mouth) and low muscle tone. All of these things together are what stops him from speaking. I never thought neurologically there was an issue. I guess since his brain was normal this never crossed my mind. I guess with everything on my mind I didn't realize that the neurological was an issue with the speaking. SURPRISE!!

2nd.. Eating... It is all the same.... Alot of the same... The muscle tone has alot to do with this.. His jaw not being strong enough to do the rotary chew as they call it. Zachary's tongue being further back due to the retracted chin. Everything makes it harder for him. Everything is complex! So it is many things that have been stopping him from progressing with his speech and eating.

There are so many things to work on going forward.

Zachary will be turning 3 years old tomorrow and at the end of the month, the Pomona Unified School District will take over his therapy and schooling. They have offered to give him...
1 hour a day 5 days a week school in my home.
1 hour of PT
1 hour of Speech
1 hour of OT

My only issues are he has progressed so much with his current Speech Teacher that I don't believe their Speech Teacher will help him at all. I enquired to Dr. Elmendorf and his Speech Therapist about requesting more Speech Therapy hours than 1 hour a week from the school district. They stated it wasn't necessary due to the Speech Therapy wouldn't help him. Zachary needs more of Medical Speech Therapy. They gave me a prescription so I can use my insurance, medical and hopefully get on CCS (California Children Services). That way he can have Medical Speech Therapy all year long. I will have to see if this pans out. I have to call Pomona Community Hospital to see. Zachary can't go to the hospital everyday with all those germs. It will compromise him. So that will be on hold until I can check out the options we have at the hospital. I need to go check all these things out... Until next time.

Zachary is doing good right now. We are have fought the Regional Center to keep Zachary there so I can continue to work. Their Psychiatrist has found Zachary Provisional Mental Retardation which means Zachary qualifies to stay there under the Lanterman Act. With him staying here at the Regional Center they will provide me with someone to come to my home and take care of Zachary. If Zachary wouldn't have qualified to stay there then I would have had to quit my job. I had spoken to Regional Centers advocates which weren't able to help me. They had never seen this situation where a child had an immune deficiency and couldn't be around other children. Since I don't have a grandparent or family member who can watch him then I would be forced to quit my job of 7 years and go on welfare. I'm not a welfare mom. Sorry I can support myself just would need a little help since he can't go to daycare. They stated sorry we can't help you. Advocates are there to help you... Not in LA County..... They state I've never seen this situation before sorry I can't help you. You would think the correct response would have been, I have never seen this situation before let me see what I can do for you and I will get back to. Nope they just stated they couldn't help me. The only reason now I will get help is because the Psychiatrist put him as provisional mental retardation. If Zachary was not labeled that I would have had to quit my job. It is very sad that since you have a disabled child and if he isn't labeled what they (the state) think isn't disabled enough you will be punished and not get the help you need. The state is not informed about my son's syndrome Digeorge Syndrome /Velocardiofacial Syndrom /Chromosone 22 Deletion Syndrome, so they don't look at this syndrome like they look at Trisomy 22 or 13, Cerebral Palsy, Autistic, Mental Retardation etc... If your child can't go to head start or be around other kids what does someone do.. How sad it is you hope the Psychiatrist comes back with one of those labels so you can continue to provide for your child.

It isn't like I went out and got pregnant and am a young kid. I got married and planned a pregnancy and had 2 incomes. Our child was born and we didn't know that he would have anything wrong. We were expecting a healthy baby. Then my husband thought it would be a great idea to go get a girl friend with no consideration for his daughter that lived with us or his disabled son. So now there is me and Zach. One income only part time due to I only get so many hours for the respite care worker to come. We have managed and we are both happy. Zachary is a dancing machine.

We have appointment in June for the Pomona School District, ENT and Nutritionist.

Zachary is doing good and has just got over a cold a week or so ago. Will update with more info later.

Zachary's 3rd Annual Bowl-a-thon

Every year since Zachary was born, I started doing a bowl-a-thon in Zachary's honor. This year will be Zachary's 3rd Annual Bowl-a-thon... The proceeds go to The American Heart Association.

A very good friend of mine every year would do the walk for The American Heart Association and choose a person to name the team after. Of course every year was a different person. In 2007, Kathy, chose her team to sponsor Zachary and there is where TEAM ZACH began.

I continued on with the name under my own team for the next year and will do so again this year. Every year our TEAM ZACH grows with more members. I would not have known about this or how to do this without her help. So every year I have a bowl-a-thon at Oak Tree Lanes in Diamond Bar and the proceeds I donate to the walk.

This year we are having Zachary's 3rd Annual Bowl-a-thon on July 26, 2009 5pm to 7pm.

Oak Tree Lanes
990 N. Diamond Bar Blvd.
Diamond Bar, CA 91765

$20.00 per person and you receive 2 hours of bowling and shoes. 5 people per lane
EACH LANE receives 1 large - 1 topping pizza and pitcher of soda.

Lanes are Limited so please RSVP by July 12, 2000 to reserve your spot.
Tricia Cannon 909-868-8076

Please come join us! It is for a good cause!

Zachary's Journey

On June 12, 2006, a beautiful baby was born named Zachary Michael Vega, 8 lbs and 13 ounces and 19 1/2 inches long. There was no sound coming from his mouth but he was crying. It is kinda foggy so my times may be off. I was sedated right after they pulled him from my stomach. Zachary's dad had come and told me there was something with him. He was feeding Zachary and he was turning blue. He called the nurse and they took him to make sure his throat was clear. They noticed a submucosal cleft. Anytime with a cleft they go to the heart. So they did. They requested what I believe was a CT Scan if not it was an MRI. But any how.... They found a problem with his heart. They seen what they believed to be a Vascular Ring. Zachary's dad told me there was something wrong with him, but I replied, he will be fine... I was in denial. Not realizing this. I truly believed he was okay.

Until there was a Cardiologist in my room talking to me. I swear all I could see was his lips moving and nothing coming out. It was really weird. I guess my mind was going 90 MPH. Because when he walked out, it hit me..... THERE IS SOMETHING WRONG WITH MY BABY! and I broke....... Crying uncontrollably.. It was horrible.. The realization that there is something wrong with your baby.

Vascular Ring =Anomalous arteries congenitally encircling the trachea and the esophagus that may produce pressure symptoms

Basically the arteries that came off the heart were wrapped around his trachea and esophagus and causing him to suffercate. This could only fixed by heart surgery and couldn't wait.

So with all his problems, Acid Reflux, laryngomalacia, hypocalcemia, congenital heart disease (his heart was also slightly rotated and the arch goes the opposite way than it normally goes, hole in his heart, retracted chin, bifid uvula, soft pallet didn't work which caused nasal regurgitation, hypotonia, Immune Deficiency Disorder and many more issues.

At 7 days old on June 19, 2006, Zachary was transferred from St. Jude Hospital in Fullerton to Childrens Hospital in Orange. On June 21, 2009, Zachary was 9 days old and they did heart surgery to remove the vascular ring and repair the heart.

Zachary came through the surgery GREAT! He was a trooper and recovered wonderfully! On June 27, 2009, Zachary was released from the hospital. Scared out of my mind how I was going to take care of this baby I couldn't hear cry. Also would throw up out of his nose and would need to be suctioned out, so he wouldn't choke to death.

Only now he had to take 1 ml of calcium every 6 hours, calcitriol to help the calcium sink into his bones, Bactrim as a preventative maintenance due to Immune Deficiency Disorder and Zantac for his acid reflux. 4 medicines for this little guy.

I had to be very careful with Zachary as he would throw up out of his nose. He would sleep in the bassinet and I would have to sleep on the couch and listen in my sleep for the noise of him regurgitating. So I could grab him before he choked to death. My eyes had to be on him constantly as I couldn't hear him cry, so I would not know if he threw up or spit up. There have been and will be many many more issues still and ongoing..

To date Zachary has been hospitalized for 3 times for Pneumonia or viral bronchial issues. He can't be around kids due to his Immune System and can't receive live vaccinations which include Chicken pox or MMR. So if he got any of these it could kill him.

Zachary is doing really well. He no longer has a calcium issue. His last visit the Endocrynologist stated he wouldn't need to come back unless there is some symptoms or issues. His parathyroid gland which we were told he didn't have is some how working now and his body has fixed the issue.

Zachary is only one one medication now for the acid reflux.

Though Zachary still has constant issues and hurdles. Zachary is developmentally delayed. Even though he will be 3 years old next month he is really actually only 1 1/2 to 2 years old. Zachary only speaks mama.... What else does he need, that was my thought.. j/k... Zachary has alot of structural issues in his mouth. With his soft pallet not working, the submucosal cleft, bifid uvula, low muscle tone and retracted chin, this poses alot of problems now and in the future. Zachary will have surgery to correct his soft pallet and submucosal cleft. Zachary will eventually have plastic surgery to pull his chin out. When this will all happen ??? That is the question.... CHOC seems to think he doesn't need surgery but the speech therapist doesn't think he will talk normally until he has the surgery. I will be going to request a Cleft Craniofacial Team at Loma Linda to look into Zach's issues.

On December of last year Zachary seen the Cleft Craniofacial Team at CHOC and I was not to pleased with their Doctors. So I will be contacting Loma Linda to get the 2nd opinion Zachary very much needs to push forward.

For now... I know there is so much to catch up on since I just started and Zachary is almost 3 years old but I will continue at another time.... Take care