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.

Active little fellow

This video taken February 3rd, 2009 in the OR waiting area.
He was very active and very movable.

Just in case everyone is wondering what is Gerald look like before he underwent surgery. I would like to post this video so that everyone might see how healthy he was.
Sometimes, when I'm feeling so sad just by looking at him in the hospital bed lying unconscious. To eased my sadness and pettiness about his situation, because I can't do anything for him at this time to help him. I watch this video of him. It made me feel that sooner or later he'll be walking and doing what Gerald's wants to do.
His father misses him so much, when he coddles his dad and slept by his side.
He is a sweet little boy and I really missed his smiles and his sweetness.

Quite Day

Gerald had an electrocardiogram this morning. As the cardiologist look at the possibilities of what causing Gerald's lungs to not functioning well, he found blood clot in the vein from his lower extremities and going up to the aorta. The doctor didn't think that it might be the cause of his problem right now, but they want to deal with it before it become a major problem. He is now getting a heparin shot on his belly couple times a day. Ouch! but that will make him get better in the long run.
So far, he was doing great although he is intubated again. His heart functioned real well. As what the cardiologist told me this morning he might just have fluid built up in his lungs and he needs to drained all those fluids through urination. As they said dry lung is a good lung.
They also tried to use nitrite oxide machine to help his lungs, but it was not helping him at all. At this time he have great numbers , his stats were in the high 80's and his heart beat were in the 130's. He have 24 breaths per minute so that's good. I hope that one day when he is ready for the breathing tube to come out, he will keep in the positive healing process.
I will keep praying for his fast healing and I know all my friends and family does it to and thank you very much for your prayers.

Intubated Again!

February 28, 2009

Last day of this month! Sigh…I was hoping that GJ will continue to have a great day everyday after they removed the breathing tube. So far I don’t know what to say… I am very sad to say this that he is back with breathing tube again. Last night before I went to bed he was doing alright although he was not saying any words. I went to bed around 12mn after I cleaned him up and everytime I open my eyes to check on him, he was already checking on me. I was surprised because it seems that he was watching me while I was asleep. Around 2am I decided to stay up with him. He was not fussy at all, he was just lying on his bed. Then later around 3:30am he started to rolled around in his crib. He was very restless, he even manage to pulled the vital signs monitor out of the box and it fell on the floor. He tangled himself with all the cords that was connected to his body, he turned round 365 degrees, which was causing his IV to bleed. He kept his nurses on toes between last night and today.
Today, he woke up around 7:30 am when the doctors came in. I thought he was gonna have another beautiful day today, but the notion that I felt turned around. Around 10:30 am when I took a peek on him before I was gonna take a shower; however, I saw him taking off his feeding tube and O2 canula and breathing very labored. So, few nurses came in to our room and take a look at him. The next time that I know is that doctor came and told me that he needs another breathing tube. I was not surprised at all , because I can see how harder he breathes and I have no other choice. As much as I hate to see him with the ventilator, it would be better for him anyways to help his lungs to function well. The doctor suspected that he might have a pneumonia or the MRSA infection is still working in his body. It is very frustrating because I can't help him. I was hoping that he can go home next week so that he can visit his grandpa. But he turned the other way around. I took some video of him in the morning which is very different than the afternoon video.

I still don't lose hope though, and I do believed that God will take care of him always. I just need to have more faith in him.

GOD IS GOOD, AND HE IS OUR HEALER.

Video of Gerald in the morning. He was breathing harder already.
He was sitting on the foam chair and watching his favorite kids movie.

This is GJ's video in the afternoon. Intubated again.
His lungs was not doing what it supposed to do.

Its another blessed day of GJ's recovery

Video of Gerald today 2-26-09

Today , I would say the best day ever after the emergency surgery of Gerald that happened last 12th of February. His appearance has a dramatic improvement since Sunday . His face looks normal now and less swollen, but his stomach is still bigger than normal. He only have one major IV on his left thigh ( this IV will stay for quite sometime because he needs to have the full dose of antibiotics and its deliver through intravenously). Also, he is on the high dose of O2, I think 7liters 100 % /hour. I can't really remember how exactly the dosage of oxygen is given. He is back on his feeds. As the amount of milk per ml goes up, the nurses will turn down the amount of nutrition that Gerald getting through his IV. He's still on the low dose of pain meds, but I think they are going to wean him off with that by tomorrow. Therefore, he might just have the oral medicine afterwards and he can be walking anything soon.

Another, since he was really awake today, we was able to watch the television. But he kept me on my toes, I have to always reposition him because he always lying vertically on his bed. They want him on in upright position so that he can have a normal function of his lungs. He sound congested so far, but if he can just cough all the white plem in his throat he would be sound a whole lot better.
Anyway, it was a pleasant day for all of us here. Thank God for keeping my son in HIS powerful healing hand.
And to all my friends that offered prayers for him. God bless you and I hope you will continue to pray for him. I appreciated your help very much!
God Bless us all!

Good day today after 14th day in bed

Gerald was watching TV and his big brother came to visit.

♥ I don’t want to say things ahead of time, but I think today is one of those wonderful days that happened to Gerald after the major surgery and after they removed his breathing tube. He looks happier and more comfortable. This morning, I woke almost 8am, and Gerald’s nurse Tiffany told me that they are going to removed GJ’s chest tube. I was barely awake but at the same time I answered “okay” to her. I was gonna go back to bed but the nurse practitioner put on a gown and gloves and ready to remove GJ’s chest tube. The nurse gave Gerald a pain meds so that he cannot feel anything. I was watching them pulled the tube and for Gerald it was nothing because he slept through it. Anyway, we started a beautiful morning and until the end of the day. The only problem that Gerald had was congestion. The Respiratory therapist kept suctioned his nose and mouth to get raid of the flame (can’t spell) in his throat. Also, Gerald was feeling well today I saw him smiled again for few seconds only. The reason why he smiled is because I turned on the TV and it was a cartoon program sponge boob. He like sponge boob. Anyway, it was a wonderful day today and Gerald looks really good. I hope this is the beginning of the beautiful week of recovery. It was a huge improvement since last couple days past. Praise God that He keeps Gerald in his powerful healing hand.

My husband and I are very happy to see him getting much better everyday.

Gerald has been extubated today

I would say that today is a good day for Gerald. He has been on the breathing tube for two weeks and doctors were really concerned that he is not improving. Yesterday, they put a new folly catheter on him to help him urinate. Guess what? It did works , he was urinating like crazy within the twenty four hours. I was really trilled. He was not urinating normally for quite a while, and that is why he was so swollen. After Gerald urinated a few liters of fluid, the doctors decided to removed his breathing tube. I took a video of him calling me, and he was trying to wiggle around. I hope he'll keep breathing by himself, so that he will not need a breathing tube again.
I offered a prayer to God right and after they took the tube out.
Please Lord Jesus, keep him in your powerful healing hands.

Gerald's day 13 of being intubated

"Mary would you please help me!" GJ's nurse calling out for help to her co-worker . That is how I woke up this morning. I was in the corner of Gerald's room fast asleep ( even though few nurses I heard coming in and out in this room) when I heard nurse Nicole asking for help from her co- worker. I was suddenly jump out of the small bed and put a gown and gloves to helped her comforting GJ. He was not so happy. He wiggles and trying to get up; however, he should not be getting up yet because he still intubated. The nurse couldn't leave him to get his medication, because GJ was so strong and very persistent to do his own plans...getting up. Anyway, a good nurse came to rescue us and brought a prn medication for GJ to calm him down. After he had a dose of meds he fall asleep until 7:30 am.

He was gonna have a catheter on his abdomen to drain some of his excess fluid (due to the surgery he was susceptible of gaining fluid in his tissue). However, the doctor ordered to put a new folly catheter on him to help him urinate. I think this folly catheter really works because last night alone he pee more than 600 ml. If he continued to urinate and less swollen, he might not need to have the abdominal catheter done.

The plans for today is to extubate (remove the breathing tube) him. I hope he can manage not have the breathing tube although he is swollen. I just pray to God that all will be in his hands, and according to his will. Today is day 13 since GJ on his back. I hope that he can be more movable in few days.