Echo cardiogram

Gerald had an ECHO yesterday and he did very well at this time. I remembered all those past ECHO test was not very successful, because he used to screamed and don't wanna be touch ( i can't blame him he's gone through a lot). But yesterday, he fuss a little and fell asleep while the guy was taking picture of his heart. So, I think he got a good view of the blood flow in his heart. We won't have the result until the end of October for his cardiologist follow-up appointment (still on 2 month window after the fontan).

No signs of MRSA infection!

This is Gerald tasting some alfredo sauce. I hope he will eat soon!

Gerald Jay had an appointment today with the surgeon's nurse practitioner. We were having some issues about the MRSA on his chest, but today it's finally stated that he's clear. He has no signs of infection on his chest. It was just a scab that healing nicely. We have a letter to prove it! :)

GJ couldn't go to school today

My kids in the stroller going to K-mart

It was a procedure at school that a sick student can not go to school to protect other students and everybody. Therefore, GJ cannot go to school unless he have a doctor's note saying that he is treated and not contagious at all. I got that note today from his pediatrician, so tomorrow he can go back to school. He only missed one day, which he does not care at all. Also, he have an pediatrician appointment tomorrow to follow about his wound after the ten days treatment. I think they are going to drained the bulging part on his chest. If this happen, I would like him to stay home rather than contaminating others at school. We don't want to risk anybody , even though I cover his wound. Also, I don't think the nurse will allow him to be at school if the wound is opened. I am truly hoping that this is the last time this infection to come back. Gerald has been on antibiotics on and off for six months, and it is not just mild antibiotic most of them are heavy antibiotics, so I am a little worried about him taking those powerful antibiotics.

Anyway, to update about my daughter, she is now five months and a week. She is heart healthy and trying to sit up. In fact, I sat her up in the playpen, and she manage to hold her balance sat upright for 30 seconds. Hurry for KC!

MRSA again???

At the pediatrician clinic.
We brought GJ to the clinic 10 days ago to check his chest where the MRSA reoccured three times within six months.

Might have the fourth one again!?

MRSA is very persistent bug. It keeps coming back! We were pretty sure that it's MRSA again. He is on the antibiotic again for ten days and hopefully this time is the last time for the super bug to reoccur.

First time riding the School Bus

He was excited just to be outside the house.

Playing!

Taking a pose from uncontrollable excitement.

Watching the kids on the side street that were waiting for the school bus.

More running... he was chasing cars and dogs too!

Pointing far away.

I thought he was getting tired...

I guess he was not...hands up in the air. Where is the school bus mom?

Yey! It's finally here!

The school bus: Cartright District No. 83 Bus # 63

I am very proud of my son that he can easily adapt the new changes in his daily schedule. Today, he started riding the school bus. As his first experience to be in a different vihecle I would say that he did a pretty good job. Were we out of the house at exactly 7:20am and the bus schedule to picked him up at around 7:23am. We were not sure if the bus will stop on the opposite side of our house, but we still waited there. However, the bus stopped right in front of our house. Luckily, we weren't far away from where we waited. Anyway, he saw the bus driver and the bus assistant and he started crying. I was gonna suggest if I can ride too, but I want him to be more independent sometimes. We saw where he was going to sit, so we were kinda relaxed afterward. Anyway the bus driver assured that he is going to be okay. I believed it because when they dropped him off he was excited to see me waiting for him. I am very proud of you my beloved son...I love you baby!

Hectic week

It has been very hectic in the past few days, and it just half way of the week since Gerald started at preschool and Ralph goes to Phoenix College. My duty was to take them to school and pick them up after wards. Anyway, today is Gerald's third day at school, so far he has done so well. The teacher said that he fuzzed a bit when dad left, but after couple minutes he was fine. He also follow directions. I am very proud of him. Anyway, here are some of pictures of my kids that I took today.

My daughter Kathlyn at school waiting for brother Gerald.
She is now 4 months and 3 weeks.
she is 17 lbs and 26 inches long
she is very easy to take care of and that's what we need.

Gerald at school. He was very excited.
He was wearing a light blue t-shirt with color and a navy blue shorts.

Thirsty Gerald...glup glup glup

The teacher can't give him anything by mouth. That what I recalled in the ISP meeting which I regretted to not clarify about giving him the water. They need a prescription before they can even given him anything by mouth.
Gerald has an issue of aspiration. His water has to be thickened all the time or else he'll get pneumonia once he aspirates.

Summer day CAMP

Gerald Jay was playing the tractor

GJ in summer day camp

Gerald Jay attended summer day camp for two weeks now. I will tell you, we noticed a big changed in his language compared two weeks ago. He talks some more , although I can't understand what he meant to say, but at least he is trying to communicate with us in the right way. He also learned more sign language, and he is a lot happier.

It was just a suggestion.

Gerald jay had to go to the speech therapist again today. This time, I am the one who took GJ to the clinic. I just want to make sure if the feeding therapist really given up on him. Anyway, according to my husband he felt that the therapist was giving up on him, but today as I spoke to her it wasn't sound giving up to me. She also mentioned to me that she was looking for a pediatrician that deals with behavioral problem if we want GJ to get help. (Gerald gets what he wants and he screams and ignores us when redirected.) So, It was just a suggestion for us if we want GJ to be more calm during the therapy session. I want to do it. I explained to my husband that he interpreted it wrong when the therapist told her that GJ needs a behavioral speech therapy.

Anyway, today he did fair during feeding session. GJ allows the therapist to touch his cheek with the spoon. But he screams again after the second attempt. We will work with on staying on the chair for 15 minutes and not crying.

Frustrated and disappointed

Today, Gerald jay had an appointment with the feeding therapist at the CRS clinic. He goes there every Wednesday around 9:90 am. I usually stayed home with my little daughter,and my husband normally takes him to CRS clinic. Anyway, today was his third session and my husband thinks that the therapist is given up on Gerald jay. It really is frustrating because GJ can not stay on the high chair even 15minutes. He always walks around the room and if you tell him to sit down he gets angry and lied on the floor. Today, they restrained him so that he can not wonder around. However, he was not very cooperative in the feeding; therefore, the feeding therapist suggested to take him to the feeding specialist that deals with behavior too. It was very disappointing. I wish we could get out of this problem. We are planning to place a G-tube on GJ's stomach and I couldn't wait for that. It came to the point that the NG-tube is not very efficient now. He normally cough it out and to put it back in is not fun, because Gerald jay was screaming and kicking at the same time.

Another, after the feeding session he had an appointment with the neurologist for follow-up check for his stroke that occurred during the aortic reconstruction last July 5th of 2007. He doc said that the damage of the stroke is more than we thought because the way his should is formed. There is nothing they can do so far but therapy. I noticed his should last weekend when I took off his clothes at the zoo. It seems his shoulder was leaning forward and I can see the slight dislocation of his joint in his shoulder. He had his therapist available for him, so I am hoping that it will resolved as the day goes by.

Sign Language

"Sign Language"

When Gerald Jay was six months old he was saying "hi"and "blue". We were all excited that he had scored high on his social skills. We thought that he will be talking sooner than we expected too. However, every time he had surgery done he always go back to zero most specially when he had a stroke on his left side of his blood. Not that it will affect his memory, but he forgets every words that he was saying before. This time after his fontan procedure last February, he was not able to say words more than "mama" which means "more" for him. Temper tantrum his only way to communicate with us. Then I realized that his way of communicating with us is not gonna work, therefore; I encourage everyone of his therapist to teach him basic sign language. I ordered three volumes of sign language DVD (signingtime) through Amazon.com. Today, those DVD's arrived and I immediately watch it with Gerald. Later, this afternoon I heard him singing and trying to do some signing with his fingers. I was really amazed. Not only him will learn the sign language but I too. I think it is worth it.

Phoenix Zoo...Star Safari Night

We took Gerald Jay to the Zoo last night just see how he will react to see some animals except the dogs and cats. He had a blast! not because he saw bigger animals, but because of the leaping lagoon and more kids played in the water fountain. At first , he doesn't know what to do , then he was running away from the water. After a while he enjoyed playing in water fountain. There were kids that pushed him away, however, he was very calm and said " ow". I was worried that he might hit somebody, but he wasn't. He was really good minding his own business. Mom and Dad are very proud of him.

He did not even care to see bigger animals. Give him more time and he will appreciate to see them. We were not prepared to get wet, but next week when we come back we will be.

He is a good brother

Both of my kids are born on the same day but different month and year. Today, GJ turned 3 y/o and a month and KC turned 3 months old. Gerald is a good brother. He comforts his sister when she cries and dance in front of her when he hears the music not that the little one would understand that her brother is trying comfort by dancing. Well, sometimes mama is busy; therefore, brother took over to care his little sister. I am very proud of Gerald that he is very good with his little sister.

July fourth family Photos

We had a nice visit at my mother-in-laws house. She made BBQ spare ribs and it was delicious.
Gerald jay was very excited to see her, and so as grandma.

kathlyn hope in the living room. She is a quite baby...she only cry when she's hungry.

Gerald was doing his usually thing at granny's house going up and down the stairs. I wish he did that during the school evaluation. But he is catching up... he is getting stronger everyday.

A picture of Ralph and his three kids with Granda Ma.

A picture of me sleeping and my three kids with mom.

Fourth of July fun activity

GJ in the portable pool

It was a very hot and humid yesterday fourth of July, and I Gerald sweats a lot. Plus he was very irritable because he was hot. Therefore, I let him play in the portable pool in the patio. The water from the faucet was warm too, so it was a perfect temperature that he wont get cold. And I did not filled the pool with water completely because I was afraid that he might drown in that little pool. Just to be safe. Anyway, he enjoyed it and he tolerated it for quite a while enough for me to hang the clothes on the clothes lines, cleaning, and enough to eat lunch.

Gerald JAy at 3

GJ and his cowboy hat

The pose

Gerald Jay is doing great now. Everyday he is going back to his normal activities. The MRSA infection in his wound was very persistent that it keeps coming back. On the third time it occurred, Gerald was in pretty healthy body, no temps and no other associated signs and symptoms. We took him to the cardiac clinic, and the doctor drained out the pus. It was an easy and fast visit and they give him antibiotics for 10 days. Right now, he is doing real well.

Gerald Jay Turned 3!

Gerald turned three years old last Saturday. We had a small family birthday party, and we are all had fun . Gerald was very happy to play with the big kids out in the front yard. As far as the jeep that he got, he does not want to do anything with it. But we all had a great time. Thanks to all my family who make this birthday possible.Gerald Jay got a jeep!!! brom brom

A rocket card from Grandma...Thank you very much!

I was trying to get him open the card...

First time at the Beach!

************************ LATE POST ********************
It has been a while since the last time I saw the beach or simply the ocean water. My husband Ralph still on FMLA since I had my second baby and Gerald is now recovering well from the surgery and infection. We decided to take a short vacation to San Diego. Since Gerald jay have problem of turning blue sometimes the cardiologist was not comfortable if we take him to higher altitude; therefore, we decided to go to Southern California that have the lower elevation.

I was very excited because it was my first time to go to the beach here in the US. Also first time of my both kids to be in the beach. At first , Gerald was afraid of walking on the dry sand. I had to carry him all the way to the wet sand and let him experience the ocean water. Then later he got used to the water and play a little bit. The entire vacation was fun! Also, Gerald and Kathlyn travels very well. Plus, Gerald looks a whole lot better.
Taken early in the morning of May 26th, 2009 at the Imperial Beach. There were few people in that area.

This pic was at the state park beach. Gerald was very excited to play

Gerald jay and Daddy looking for mommy:)

Time to update! MRSA

MRSA reoccured!

Picture of Gerald jay's chest when we brought him back to ER
on April 5th, 2009.

It has been a while since the last time I posted an update to my blog. It was quite a challenged to write on my blog when things are to much to handle(busy). Well, anyway after Gerald was released from the hospital after his FONTAN procedure, he was just very sick. As I posted before that he had MRSA infection and he had the six weeks dosage of antibiotics. Apparently, MRSA is not kidding. MRSA stayed in GERALD's wound. He was home for eight days, but not doing so well. He was not able walk nor doing any of his normal routine like playing and be a kid. He only sleeps and sleeps and sleeps everyday. Eight days later, I woke up at 3am and he was already up. He asked for water ;therefore, I turned on the light so that I can give him what he wants, and there I saw his chest wound was all red and warm. His wound looks like a rubber eraser of a pencil that sticking out. We have to rushed him to ER at St. Joseph's Hospital for possible MRSA re-occurring. He was in again at the PCTICU at St. Joe's for 16 days and he is on the antibiotics for six weeks again.

While Gerald was back in the hospital, the next day I had my new born at the another hospital. My poor husband was exhausted from going back in fort in between two hospitals. My new born is doing well and she is now 1 month old (healthy heart).

Gerald now is back home for almost 4 week and doing a whole lot better. We are giving the rest of his antibiotics through his broviac (IV) couple times a day. The antibiotic will be complete by tomorrow the 17th of May. I am positive now that he is MRSA free ( I am praying and crossing my fingers). He looks totally different that the first time that they sent him home. He had a cardiologist appointment lat Thursday and the doctor said that he looks better now.

Gerald will be at the hospital on Monday to remove his broviac. I will post more information on how the doctors and surgeons deal the infection.

Thanks to all the PCTICU Nurses, Doctors, and Staff.

Expressing our Gratitude to all of you!
Thank you very much for taking such a good care of our son Gerald Jay. We are very fortunate that you have been here for us during these very stressful times. You’ve done an amazing job to take care of your patients.
You guys have an excellent team! More power to all of you.
THANK YOU VERY MUCH to all!

Cardiac Surgeons:
Dr. Cleaveland and Dr. Nigro

PCTICU Doctors:

Dr. Choi
Dr. Underwood
Dr. Lane
Dr. Grimalde
Dr. Yoon-Willis
Dr. Willis

APCC Cardiologist:
Dr. Nowlen
Dr. Shah
Dr. Worshien
Dr. Alhaderi
and other APCC cardiologist

PCTICU NURSES, NURSE PRACTITIONERS, SUPERVISORS & Managers

Nicole K.
Maryrose
Rhonda
Dana
Shawna
Cyril
Becky
Debbie
Tiffany
Leslie
Kristy
Brenda
Killi
Peggy
Laurel
Robbi
Arva
Gigi
Melissa
Kim
Claude
Teresa
Patricia
Becky
Amanda
Ashly
Nicole D.
Jamie & Jamie
Staci
Mary
Kathleen & Kathleen
Sally
Isumi
Elizabeth
Shelly
Jennifer & Jennifer
Ricole

Stacy G.
Jessica
Laura
Josie
Rebbecca
Michelle
Amy
Coleen
Nicole P.
Florence
and to all nurses that I forgot to get their names.

Respiratory Therapist:
Ginger
Beto
Jess
Kendra
Todd
Dave
Jared
Amber
Micco
and others too.

Also, thanks a lot to all the child life specialist, social workers and other staff.
Ashley and others child life staff
Stacy and Magie
and to Yolanda and others staff at St. Joe's PCTICU

Thank you very much from the bottom of our hearts!

Day 52: Going Home Definitely!

We are going home definitely. Gerald had a bowel problem yesterday that is why they canceled our "going home" plans. However, the nurses make sure that we got all his medications ready. He has nine different kind of meds and two of them will be wean off in couple weeks. Also, they gave us nine cases of milk. Aren't they nice? I was very thankful that they do that. I really appreciated whatever help we can get. Anyway, last night the nurse practitioner was concerned that Gerald was having a constipation problem and emesis. I told her that that is his normal problem for almost 3 years now. She laughed at me actually, but that is the truth. That is the reason why we give him miralax or prune juice every morning to resolve his constipation problem. For his emesis I don't know what to do with that. Others said that his feeding tube also might contribute to his gouging plus he has acid reflux. He is on zantac again but higher dose this time since he is a lot bigger now.

Anyway, overall the heart surgery (FONTAN PROCEDURE) itself went well. He looks really good now and playing when his awake. He smiles a lot, thats got to be a good indication that he is feeling real well:).

I would like to extend our gratitude to all the doctors and nurse that took care of Gerald. Thank you very much, without your caring and loving job, we won't be here as Gerald and our family now. Thanks a lot!

Day 51; Going home may not!

Day 51Gerald is doing really well now. We are suppose to go home today around 4pm after the last dose of is antibiotic; however, last night he had diarrhea after they changed the calories of his feeds.

So, I was a bit disappointed when they told me that we might not go home today unless GJ's stool harden a little bit. Otherwise, we might coming back here if he keeps having diarrhea. I guess that is the best thing to do then.

He looks really good though! He keeps sleeping because of his some meds are for that reason. In this picture, he woke up around 8am, and he saw daddy taking picture of him. He has such a beautiful smile in this picture.

Day 49: O2 problem might be over!

Day 49.
I am crossing my fingers that Gerald will no longer need the oxygen canula when we go home. Gerald vomited a while ago, and it was hard one. He even vomit his feeding tube that he looks like a snake figure:). It was very uncomfortable by funny looking. I wish I have my camera handy. I know I'm bad, sorry. Anyway, we have to cleaned him up from his mess, and I removed his nasal canula for oxygen ( he nurse was here though, I wouldn't remove it if they were not in here). After a while, the nurse said that he did pretty good with out it. So, I hope we don't need an oxygen when he goes home on Wednesday night or Thursday morning. Gerald is doing great, and slowly going back to his normal self. Thank God for everything!

Congenital Heart Future Act

To all my friends,
Please help us to distribute this letter to help those kids born with heart defect. Your help is very much appreciated! Thanks a lot!

*************************************************
Dear Members and Friends of Mended Little Hearts,

I am very excited to inform you that The Congenital Heart Futures Act was introduced in the Senate and House of Representatives on Tuesday March 17th! This bill calls for increased funding for research, a national registry, and funding for a national awareness and public education campaign.

Mended Little Hearts, along with our partners in the National Congenital Heart Coalition, need your help to get this important piece of legislation passed! Please take a moment to read the information below and find out how you can help and send an email to your representatives today!

Please feel free to pass this email along to your friends and family to ask for their support, and to post the information on your Facebook, MySpace, Caringbridge and Carepage pages!

In the Senate, Senator Dick Durbin of Illinois led the charge joined by Senator Thad Cochran of Mississippi . In the House, the bill's lead co-sponsors were Representative Zach Space of Ohio and Representative Gus Bilirakis of Florida . We are thrilled that this groundbreaking piece of legislation has already received bipartisan support. To learn more about the bill visit http://durbin.senate.gov/showRelease.cfm?releaseId=309944

So what's next? Like any piece of legislation, the Congenital Heart Futures Act has to get majority support in both the House and Senate in order to be passed. Please email your Senators and Congressman today to ask them to become a co-sponsor of this legislation, which is bill S. 621 in the Senate and H.R. 1570 in the House. It just takes a minute - here's how you do it:

1) Go to http://www.senate.gov and http://www.house.gov/ to look up your representatives and their email addresses

2) Draft your email. - Please see the attached template to get you started.

3) Make your letter personal to you. The attached template has a place to add two or three sentences about why this legislation matters to you personally, and offers some samples to help get you started.

4) Send your email. Be sure to include your full mailing address as well as your email address. Don't use US mail, since thanks to the anthrax scare it now takes many weeks for mail to arrive in Congress.

That's all there is to it!

If you are a constituent of Senators Durbin or Cochran or Representatives Space and Bilirakis, we encourage you to email or call their office and let them know how much you appreciate their leadership of this effort.

What amazing progress!

Amy Basken

--

National Advocacy Chairperson

Mended Little Hearts

www.mendedlittlehearts.org




Sample Email:

Dear [Lawmaker name here]



I am writing as a member of the Mended Little Hearts to ask for your help in making a brighter future for all those born with heart defects. On Tuesday, March 17th, the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570)and help all those born with heart defects live longer, healthier lives.



Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.2 million Americans now living with congenital heart disease.



[2-3 sentences saying why you care – some examples:

From an adult patient:

Since being born in 1956 with a complex heart defect, I have undergone 4 open heart surgeries and am currently on disability due to my heart. I have struggled to get the information and care I need to take care of my rare condition, as doctor after doctor answer my questions with, “we just don’t know”. The federal government should use my tax dollars to do the research to get those questions answered, so that both today's adults and tomorrow's children get better care.



For a parent:

My daughter was born with a complex heart defect and underwent three open heart surgeries before she was three. I want to be hopeful for her future, but right now I know there is a severe lack of research, awareness, and resources available to help us help her do well as she gets older. Please help me help my daughter survive to become a healthy, productive parent and grandparent.



From a health care provider:

As a doctor taking care of congenital heart patients I struggle to find the information and resources I need to help these patients thrive. These patients face high risks of developing additional heart problems as they age, and we have limited information on best treatment strategies. Many health care providers are unprepared to care for their complex life-long needs. Please help me protect this pioneering and vulnerable population.





To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.



Thanks in advance for your help in securing a future for all those living with congenital heart disease.



Sincerely,



[name]

[full mailing address]

[email]

Day 48: Still doing great!

Day 48.Cow on his head!

He just woke up at 8pm. I sat him on that chair and later he was playing with those med pumps:). He likes to pushed buttons.

I was able to get out of the hospital yesterday and be home with my hubby last night. I attended a party hosted by the cardiac department here at St. Joe's. It was a fun event. I just didn't get a chance to get pictures when I was there. The event was dedicated for all the families who have babies with the heart defect. In this way, some parents can meet other families with different kinds of heart defect and share their experiences. I was in this kind of group before and those families that I met were really helpful to my family. I had a lot questions that I couldn't get any answers by just asking myself or the internet, personal experiences is more informative than online services.

Anyways, we have Nurse Gigi (Filipina)last night, and we were very comfortable leaving GJ with her. I knew her and took care of GJ since he was a baby and she is a trustworthy person. I get to go home last night, and I was hoping to get some good night sleep. However, my poor husband couldn't sleep and keep tossing and turning that wake me up all the time. I had to get up at 3:30 am and had some cereal for an very early morning snack:). I went back to bed afterwards. We got up early to be at the hospital with Gerald. We came here about 6 am and Gerald just woke up according to the nurses. Gerald slept through out the night. That is good! He probably didn't know that I was gone home.

Overall, Gerald looks really good. He have some breathing issues, but his lungs sounds clear according to all the doctors. Hoping to go home by Wednesday:) I am so excited! Then mommy can go in labor hehehehe.

Also, I would like to extend my gratitude to nurse Gigi for taking such a good care of my Gerald.
Thanks a lot nurse Gigi!

Day 46: Feel Fresh

Gerald has been sleeping all the long for almost 3 days now. Sometimes I have to wake him and sat him up so that he can be more movable. His numbers were looks good that doesn't give enough reason to be concern according to the ICU doctors. We will probably here until next week just to finish the dose of his antibiotics. Rather than the antibiotics and some 02 problem , he is doing really well. Here are some pictures that I took today.

He looks handsome because he just took a bath:) He was watching sponge bob.

Pretending to be a cute little boy:)

Hello There!

Just looking at the selling:) hehehe

I feel so good and clean! Yehey... thanks to nurse Nicole and mom for bathing me today:)