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:)

Expressing our Gratitude!

Day 45

What a big surprise!
The nurses here at Pediatrics ICU in St. Joesph's Hospital surprised us for all the baby stuff. Nurse Dana and nurse Nicole came to our room with all those baggy with full of baby stuff. I was really surprised. I didn't expect that they would spend their time and money to buy stuff for my baby, but they did. I almost cry when I saw them walking in our room with all those baby stuff.
To all the nurses here at PCTICU thank you very much for your baby gifts. My husband and I are very much appreciated your thoughtfulness and kindness. Those cloths and other stuff are beautiful and I like it very much. Again, thanks a lot!

I moved GJ in my portable bed and he seems to like it. It is more comfortable than his on mattress in his crib.

Daddy and GJ.

This bumbo chair was given to me by nurse Dana. I never had this kind of chair for GJ before. She also gave me tons of newborn clothes. I would say that KC will be well dressed for her first 6 months in her life.

More baby garments for all the nurses in this floor (PCTICU)
Thank you so very much!

Another picture of their gifts.

Day 45: Playful Mood

Day 45

We were suppose to go home today as what the nurses told me earlier. However, GJ was kept vomiting yesterday and even this morning, so they hold us again. The nurses and other medical professional here at St. Joe's were trying hard to get our stuff done in the timely manner, and they are making sure that once we go home we won't have file of bills. Gerald needs an oxygen at home plus he has a lot of medications. I was afraid that once we go home the insurance will not covered all of those medications and we will ended up paying it. Right now money is kinda tight in my family. Anyway, the social workers here and the nurses are helping us for all of Gerald's needs. Thanks a lot for their help.

This is the picture of Gerald and Ginger (RT). She was giving him a breathing treatment. Gerald's upper throat has a lot of think mucus, so the doctor ordered a breathing treatment every four hours. He hated it, as you can see his legs were on her arm. It was pretty fun the first time because he cornered her with his fours.

Anyway, here is the video of nurse Vicky and Gerald. Gerald had a morning emesis yesterday, so I had to put him in the wagon so that I can change his beddings. Nurse Vicky was GJ's nurse since he was born and just yesterday we finally got to have her working with Gerald. When nurse Vicky did her morning assessment, Gerald helped her out by putting the stethoscope on his right (chest) lung so that she can hear his lung. Nurse Vicky was very happy to see him smile and playful.
Thanks a lot Ms. Vicky!

Also, later yesterday afternoon Gerald's uncle came by and played with him with his favorite cow. Gerald was smiling and tossing cow on the floor. His uncle Glenn will pick it up and give it back to him and he will do the same thing. It was nice of uncle Glenn to come by even though he was very busy at home. Thanks to uncle Glenn for coming and spending time with GJ.

Tasty stethoscope

Funny! he put the stethoscope in his mouth .^_^.

He is doing real well, and we might going home tomorrow or Thursday. Gerald did a lot of work today. He did play with the therapist and play with us. He really looks good. However, he had a fever this afternoon about 102.8 F.
In this video, he put the stethoscope in his mouth and just sitting in the crib watching people passing by his room. Sometimes the nurses would take a peek on him.
I would say that he is slowly going back to his normal self. He is just weak at this moment but hopefully he will be able to walk again soon. I have to work with him though when we get home. I will try my best to help him to get back to normal.

Praises, Praises to God!

Day 42: Just another day

Gerald has some issues of having temperature every now and then. Therefore, we might not be going home until sometimes this weekend. I also requested to have a PT to work with him so that I will know what to do when we go home. Gerald is not walking yet after the surgery. He was trying too this afternoon, but he was very weak. He even fall asleep on us during the therapy session. Another, he have some breathing issues too. He have tons of think mucus in his throat that makes a gurgling noise when he is asleep. The nurse has to suction him when he needs to. He sat on the chair for two hours and didn't complain at all.
Anyway, overall Gerald is doing better now.


*****Ralph in front of St. Joe's hospital*****

*****Our family picture for today ******

***** GJ was watching the TV again*****

Day 42 in the Hospital...he really looks good!

GJ playing with the IV pumps

After I held GeRaLd for quite a while. When I put him back in his crib, he prefer to sit so I sat him up and this is what he does.

We had a wonderful day today. Gerald sat on the chair in the wagon for couple hours and slept for 4 hours straight. I even slept too. He had some emesis episode and thats about it.

I also tell the doctor that if possible I would like to get Gerald sitting and walking independently before they even think about sending us back home. I can't hold GJ all time at this moment and plus I am having a baby soon. I hope that they can help us with that.

I thank God for continue listening to our prayers.

Nesting

My father-in-law made this very nice cradle before Gerald was born. Gerald used this too when he was a baby and now it is prepared for Kathlyn. I made the pillow and the two side rolls. Thanks a lot to Dad for making such a nice cradle.

Gerald missed Mommy so much! He hug me so tight. I was gone for the whole day today

Worried look! WHere have you been?

Gerald in mommy's arms.

I don't know if every pregnant woman had gone to a nesting stage. When I was pregnant with Gerald two weeks before he was born I felt that I really have to clean the whole house. I was 37 weeks when I felt I got all the energy to do everything in the house. So, today when I found out the nurse Maryrose is our nurse, I told her that I needed to go home and finished cleaning. She was happy to know that I want to go home and get some rest too. When I left Gerald was asleep and he didn't wake up until 11 am. I took the bus today because Ralph was at work and he has the car. Much to my surprised that bus fare increased. I should say doubled. I only have $1.25 in my pocket. And that amount would only take you one route. I need to have $2.50 to get the whole day pass. It was very annoying because that it the only coins that I have. I ended up walking for a mile to get to my house. Well, I think its good for me as a exercise:). Anyway, I was home at 10 until 7:30pm. I constantly calling my nurse to get an update about Gerald and she said he was fine and keep playing. When I was at home I did a lot of cleaning and making some baby stuffs. One of those is the pillow and the two side rolls that I have in the first picture. I been nesting since last week and I don't know why. I hope this is normal.
Anyway, when we can back here at the hospital Gerald was asleep. When he woke up, I held him and he hugs me so tight and don't want to cut lose. I felt that he misses us a lot. My husband and I were alternating holding until 11 pm.
So far, he looks really good and happier. Praises to our God!

**********this post is not edited yet **********

HLHS Heart Miracle: Temperature Spikes Again!

HLHS Heart Miracle: Temperature Spikes Again!

Temperature Spikes Again!

He likes playing cards and throwing it on the floor.

playing cards

Day 39.
I thought our rough days are over. We were informed that Gerald will be going home on Monday. I was a little surprised when they told me that, but I said "OKAY". I don't know why I just have a feeling that he was not there yet to go home. Maybe because of his muscle tone was not as good as it was before we came over here. Plus he hasn't been walking yet. Then, yesterday morning his temperature spikes again to 102 F. I guess this is not as rough as the other weeks.

Yesterday, I played cards with him after my short nap. I was lying on my bed when the physical and occupational therapist came by and worked with Gerald. I was too exhausted that I couldn't even open my eyes when I was talking to them. The two therapist was very nice to say, " that's okay mother you just go ahead and sleep we got him". After that word, I was out again. I woke up 4pm and Gerald was just coughing and had a 101 temperature. This is what I was afraid of. Even though he was not feeling so well he managed to play with me with his ABC cards. I sat him on the blue foam chair ( the nurse warned me not to lift him, but I still did because I need to change his bed sheet). When I gave him the first card, I saw him chuckled and giggled so hard that I thought he was having a seizure. But when he raised his head with a great big smile of his face, I was relieved. After he was done sitting on that blue chair, I asked him to help himself to get up, since his feet were on the bed. I was surprised that he understood what I asked him to do. He stood up on the bed with my help of course, he is still wobbly after a month of lying on the bed. With him standing on the bed it was easier for me to put him back on his bed. He was quite happy and playful after all.

Since Gerald had the infection the doctor ordered a blood and urine culture. I just asked the nurse about the result of that culture for 12 hours period and it came back negative, so that is great! Also, they did another blood culture this morning again. It may take us another week her at the hospital. Gerald like the 49 days stays in the hospital. His first and second surgeries were all 49 day. I don't know why but this number sounds good to him.

Today, his lungs sounds pretty coarse. I can tell because I can hear it without using the stethoscope. He wakes up when someone messes him around, but he stayed calm until they draw blood from his wrist ( for blood culture).

We will be here for another week according to the doctor last night. I feel more comfortable with that. Also, they have to teach me how to give a shot on him. He is getting shots couple times a day for his blood thinner( levanox shot) and injecting vacomycin (antibiotics) in his broviac IV.

God is still there and listening to our prayers, so lets keep praying for him. Thanks a lot!

Good News

Dad and Gerald

Great news! We might going home next week according to all the healthcare professionals that took care of Gerald Jay. I couldn't believe it. But they are serious and the nurse practitioners wrote tons of going home orders to our nurse. They also asked me if we need more feeding supplies and other stuff. This is it! Yahooo, I am thrilled to the max.
Praise God!

Smile of an Angel

Here is the video of Gerald jay today. He was in a good mood that he even show us his smile for few minutes. I was really happy to see him smile after almost four weeks of battling the MRSA infection. He was really agitated this afternoon. The nurse gave him some sleepy juice(meds), and he calms down for half an hour. When he woke up, he looks like having a seizure. The RT was in our room when that happened, and he said its just withdrawing from all medication. After the RT left I gave Gerald like more than 60 cc of thickened water. He drunk the water in less than 5 seconds. I said "wow". Anyway, after that I opened the curtain so that the nurses that are passing by can see him just in case he falls on the floor or something ( he is lying on the adult bed) while I'm in the restroom. I was about to leave him when I saw him smiling and talking. I can't help talking video of him. This is his first smile for a long time. I would say that he is definitely recovering from all those painful experiences after the surgery.
Thanks to our Almighty God!

Agitated

This is Gerald today, he looks really good.

Me and my belly (bb. Kathlyn) standing by Gerald's bed

What a pose! He was spread out like an eagle :-)

Ralph stayed with Gerald the lastnight, and I went home to do some cleaning. I was hoping to get some goodnight sleep at home, but it never happened because I was paranoid of every little noise that I heard from the outside. Anyway, before I left last night Gerald was awake and very calm. But Gerald didn't have a good night sleep either. I am concerned because he didn't sleep well the night before too, and he was awake the whole day. I don't want him to go back where he had heart beat problem again, so I told the nurse to let him sleep (not doing any assessment).
I came back around 12noon today, and he was very agitated ( makes me concern again). But the nurse said that it might be the medicine that he was on, and they are trying to wean him off from all those medications. His heart rate is higher again, but his 02 level is stable to mid 80's (good). Around 1:30 when the nurse gave him some happy juice (sleeping meds) and he went right to sleep for 3 hours. While he was asleep his heart rate went back to normal. Then when he woke he was acting like a little crazy guy. Grabbing everything that on his bed or whatever he can grab on. I saw him trying to pulled his IV too, I have to stopped him right away. I told the nurse that he was acting up again. She gave him morphine and he went to sleep again but his heart rate was still higher. The nurse practitioner spent more time in our room again because of that. We were happy not to see those nurses more often in our room, but today they were here to see what is going on with him. They thought Gerald might be a little bit dry, so they gave him more plasma fluid. Other than this small event today, Gerald is still looking great and hopefully to feel better too.

Another wonderful day

Video taken today after I held Gerald on my lap.

I was taking his video when the surgeon came by, and I have to stop the first video and start all over again. Anyway, this is him today, he looks very comfortable and conscious. He hasn't smile for me yet , but he will get there.

Another day of positive recovery.

GJ's update for today! No breathing Tube!

He was extubated couple hours ago and he looks really good. He was not fussy, he just lying calm and watching cartoons program on the television.

This picture was when they are ready to remove the breathing tube.

He knows what was going on. He criesd a little bit!

Gerald stayed very calm. The RT's are preparing to extubate him.

With nurse Maryrose...she was emptying his stomach by drawing out some of the air and fluid by a syringe.

He is progressing a little bit now. Hopefully this is a positive steps for him. Let's pray for him that this is the last time for him to have that breathing tube.

Baby Shower Party March-7th-2009

Picture of us with my friends in Nelly's kitchen:)

Group picture in the living room

Picture with the yummy foods.

BABY SHOWER PARTY AND FUN FUN FUN!

Yesterday, I had my baby shower hosted by my two good friend Nelly and Belen held at Nelly's house. We just had a small baby shower party, but we are all had fun and had a wonderful time. It was my very first baby shower party , although this was my second baby my husband told me that I just don’t have to many friends before:). Anyway, yesterday I felt very special because all my friends attention were all focus on me. To all of them who came and hosted my baby shower party, I really appreciate what you’ve done for me and effort to make my shower party successful. To this very moment I still remember all the laughter that we shared together. I really appreciated your presence and presents as well, but most of all the happiness you shared with that no could ever ever take it away from me.

Most of all , I would like to thank my two wonderful friend Nelly and Belen for their generosity and Kindness. God bless you, us and all!

My Life and My Experiences: New bumps on the ROAD

My Life and My Experiences: New bumps on the ROAD

New bumps on the ROAD

This picture was taken last Feb. 4th. He was very sedated because he wiggles a lot. He almost remove his breathing tube.

It has been a while since the last time I updated my blog about my son's health condition. Three days ago, the doctor found out from the result of the CT Scan that he might have infection in his lungs, aside from the infection in his bone (sternum). The CT Scan result there was some fluid sac in his lung that might be another infection. The infection control doctor thought that it might be the same kind of infection that he got after the surgery which is MRSA. They told us that it might just the onset of the infection called emphima ( a fluid sac in his lungs). The same night that Gerald had the heart CAT (Feb. 3) he had a bronchioscophy (can't spell) where they look at inside of GJ's throat upto his left bronchus and they flashed it with saline solution. The instrument that the doctor used (I can't remember the name of the instrument) it was a long tiny black rubbery tube with camera and suction attached at the tip of the tube. When they flashed inside the throat it suction the fluid out. They did this to see if the fluid sac of his lungs is an infection. They sent the fluid that they got out from his lungs to the laboratory for culture, and so far it came back negative. What a relief.
Also, there was a test that was done yesterday. This test (I forgot what it's called, but they used a x-ray to get the fluid in the right spot in his lungs) is to figure out if the pleural cavity around his lungs is also infected. The same thing that they did, they get fluid sample and sent to the laboratory for culture. The result is not out yet. It takes two to three days to know the result for culture. They did the gram staining process and the result was negative for any bacteria. This is another good news.
So far, Gerald is feeling better, but he is still intubated. He opens his eyes and just stares on the selling which make us scared. But the doctor told us that he was just drug up. He hasn't have the prn medication (make him sleep) for more than twenty four hours, so I suspected that the night stuff last Wednesday night gave him to much of sleeping juice. I was not a big deal though , but he scared us when he opened his eyes and stared at nowhere. I hope all his test result will be negative for any bacteria.
I have been doing a novena to the DIVINE MERCY which ate Elaine gave me through the multiply website. Today is the third day. I said to my novena that I will do this for three consecutive days and also say my intention. I do believe that God is listening, because I can see a little progress to my son's health condition.

PRAISE TO OUR GOD!

My Apology

I would like to apologized to all my friends who have been very supportive to my son's health conditions. I wasn't able to get online because of not getting any good signals for wireless internet here at the hospital. I will catch up to you as soon as I can. Again, my apology to all!
God Bless you all!

Going down Hill

Going down hill...that is what the cardiologist has to say early this morning. Apparently, Gerald had a few since yesterday. His temperature hasn't gone down even they gave him two kinds of fever medicine. His recovery keeps changing from poor to good and then going back from good to poor for quite sometimes. According to the cardiologist, Gerald is not improving at all. I thought he was improving, I guess he was not.
Today, he is going to have a CT scan and later might have the heart catheterization. Since he has fever since yesterday they might delay the heart cath until his fever is totally over. The infection keeps coming back. I don't know if the same infection but it totally using Gerald's body and that is why Gerald is sometime he feels better and sometime he feels weak and worse.
The cardiologist talks about the worse posibilitiies of getting another surgery to scrap off teh infection in GJ's sternum, if the infection is really growing in his sternum they might cut off some but part of his bone and replace with (hmmm I forgot what kind of tissue he was talking about), anyway they have to do the best for my son. It is getting uglier this time and we are just so worried now. We got a lot of going on in our family. Six weeks from now I am going to have my second baby (which is exciting), but I hope Gerald is out of the hospital. Another, my father-in-law is very sick too and we are just not in a better situation of losing strength here. We have to stronger all the time.

To all my friends here, please pray for all of us and most especially for Gerald and his grandpa.

MRSA infection : News video

I got this video from CNN website, thought that it might be interesting to post since Gerald got the same infection. MRSA is a tough bug and can be very fatal for children like Gerald's age.

Pregnant twice!? How that happened?

Amazing isn't it?

Dr. Connie Hedmark is my friend's daughter. She got this video from CNN, and sent it to me so that I can see it. And now I am posting it here for you guys to watch.

Just another day !

Last night, GJ was trying to remove the breathing tube by moving his head from side to side. He managed to detached the 02 connector (blue and white tubing). He did it couple times before the night shift ends.

Picture of GJ after they removed the staples on his chest.
I was watching the nurse practitioner cutting the staple off his chest, and every time she picked it I say "ouch" for my son's behalf.

This picture taken this morning. He was sleeping comfortably.

Today, he is doing great ( but still ventilated). He is going to have a heart catheterization its either by Tuesday or Wednesday. They also did a blood culture, urine culture , and sputum culture to test if MRSA is still present in his body. He had the temperature this afternoon that is why they did these test.
The blood culture last Saturday came back negative, so that is a good news.
Nothing is exciting happened for today as far as GJ is concerned.