Surprise!

Aaahh what a busy week for us. We are tired and very exhausted especially me had been staying in the hospital all day and night with my son. Although it is not as stressful than I thought it would be, it is actually more like learning new stuff for us.  The only thing that made me stress about is keeping his Ostomy bag on his skin without leaking. Lately we've been changing his bag about 4 times a day, his skin are so irritated and the only way is at least change his bag before the output leak or touch his skin, some other items I used to help it seal are the stoma adhesive powder and my favorite Barrier Film by Cavilon, this help to stick the bag more, so far the skin is getting better. When I get a chance I will show you how I do and change his Ostomy bag. Also his wound (the old site of ostomy) is healing and we are trying our best to keep it clean and away from any infection. Unfortunately, every time his ostomy bag leak it always touch the wound dressing so we have to change everything. This is another dressing that I learned and have to go through everyday until the wound heals. I am glad some part of the skin is healing and closing up. 

Well we got discharged today! This is probably the fastest discharged we ever had. We thought that we are going to stay for another week but I guess Leon is doing good and feeling much better. We started his feedings yesterday at 2cc per hour with Pedialyte, he tolerate it good and later we switched into formula. So far no vomiting and feeding rate was increased at 3cc today. We will keep that rate over the weekend and on Monday we will going to call our GI doctor for follow up. We are still in LA, Leon has a follow up check on Friday and make sure that he is good to go back in San Diego. We are home with our family and everyone are happy to see Leon being home with us again. Tonight I can't wait to get a good sleep and get some rest. Maybe I should try to work out tomorrow just to burn all the fatty food we had ate, UCLA has really good dinning food. 

To all of our Family and Friends We THANK YOU all for the love and prayers.  

Leon turned 10th Months old!!!

Hello, I'm 10th month old!!!

What can I say our little champ is growing :). It has been another month Leon makes us smile and laugh! I never thought I could love sooo much like this. He is truly our precious! There's no minute, time or day that I don't think of him, seeing him getting better each day from the recovery is a blessing and a miracle. I love my baby more than anything in the world. I thank God he gave me Leon.  

Grandpa and aunt Ana were here to celebrated our little champ special day. Leon is doing good and seems like he is back to his normal routine "playing and standing up". If you look at him you wouldn't even know he had a surgery 4 days ago. He always try to impress us, what a strong boy. 

We just settled in a  comfortable room with lot of lights and a view of the healing garden, he is more stable and recovering really good. George and I spent our first night together with Leon in his new room. So glad he slept through the night. We are trying to put his weight back again. I'm glad Leon made it to 16 lbs before the surgery, he only lost about 10 grams and we are hoping he could get that back in a week. 

Tomorrow plans is to start his feeding. We will see after they do an x-ray of his stomach just to make sure there's no obstraction or anything. I pray that he will tolerate his feeding very well that way he can eat and be able to eat more food. I can't wait for him to try cereal or a fruit. I can tell Leon got a big appetite just like his dad.

3rd Day from Revision urgery

Leon is recovering really good. Surprisingly he could seat now and talking a lot,  looking more comfortable. Once in a while though he cries a little when he sneezed or cough because he could feel a little pain but thats about it. He hasn't receive any pain reliever sine the 1st day of the surgery. Yesterday, I changed his ostomy bag for the first time and I like it the way it look. More easier to place the bag and hopefully when his wound get heal and close up, the ostomy bag would stay and keep longer. He threw up a little bit of some extra fluid due to he hasn't eaten anything.  Doctor said we have wait for 7 days before he can start to eat again. This morning he received some platelet due to his level is low. He did very well and I noticed right after he received the transfusion his color had changed. His eyes are more brighter, his lips is more red and he got a rosy cheeks :) so cute.

We hope and pray that Leon will continue to get better. We are not in a hurry to go home, we wanted to make sure that he get treated well and he is able to eat more food. Well we'll find out next week once he start eating.

 

Hello!!! 

They said I look like more of my  mommy 

1st day of Revision Surgery

Leon was admitted this morning at 6 am. He is feeling better even though we stopped feeding him last night. We went to the Admission's Room and met up with Dr Farmer to talk about 

the plan for his surgery.

The game plan would be to revise his Ostomy then attempt to reconnect his colon together. His ostomy has been in the prolapsed condition 4 months now ever since we got discharged.  I think every month his gut pushes out an inch or so? Anyways, we are hoping this surgery will help his ostomy stay intact. Dr Farmer will try to straighten  and stretch out his small intestine to prevent another prolapse, then they will try to reconnect his colon. Actually there are two plans for Jordan's colon: Dr Farmer will have to see if reconnection is possible and thats dependent on the size of his colon. If it's too small, the doctor might have to leave it as it is and use a re-feed method. That translates to... more work for us! 

We pray that it will be a success, God only knows. 

The surgeon nurse just called us. He said they started at 10 am and

 it might take 2 to 3 hrs. We will keep everyone updated on developing events. Right now we are in the 

OR waiting room. Thank God we are able to use our computer here! The new 

UCLA building is really beautiful and futuristic, it eases our minds a bit from the worries and stress.

This is the entrance of  Mattel Childrend's Hospital U

CLA 

Here we are in the OR waiting room

Update 12:25 - Nurse called and they are done closing up. We are surprised Dr. Farmer came here 10 mins to talk to us. He said Leon is doing great! His ostomy will be on the left side now which I think is better to keep off away from his broviac line. He did reconnect the bowels together! A good relief to us yehey no more prolapse. Leon just transferred at the Post Recovery Room. We will get back to you all as we need to see our  lil' fighter Leon. 

Update 7:42 -  Leon has been transferred to PICU. We are happy and thankful because of the result of the surgery, Dr. Farmer did his best to make the first plan on reconnecting his bo

wels. The fistula and the old prolapse sight is now closed and he has a new ostomy which on his lower left abdnomen, looking preety good. I hope it'll stay like this until it is ready to close. Leon is comfortable resting on his bed, stable and just relaxed. He usually cries and get really fussy but now we are surprised on how he handle this...maybe he is getting expert on how he handle his body whenever he go under the surgery...but surely he knows how to make us smile :)

      Right now, he is being observed for 24 hours. They are working on getting his TPN back, there might be changes on the TPN doses but he will still getting the full nutrients. We brought our wonderful Omegaven and gave it the pharmarcy so they could store it and prepare for him. We are glad that they allowed to use it  on him here. Anyway, we will continue to update you all tomorrow as we have to get some rest. We would like to Thank everyone who prayed for our little fighter. God Bless your hearts!

 Here's our little champ sleeping quietly with his favorite pacifier and pillow around him

Getting ready for the big event...

And we started our week by visiting grandma and grandpa in Long Beach. It's been a month since they saw Leon. They were amazed how he got so big and chunky. We left Sunday afternoon. Our car is packed with all Leon medicines and toys! George and I shared in one luggage and Leon has one luggage himself and 3 huge bag full of his stuff. It took 3 hours for us to pack! We were so exhausted by the time we had to leave.

Anyway, our plan for the week is to spend time with our family before we headed to the hospital tomorrow. I will find out later what time he will be admitted.  This surgery will help his ostomy to re-insert inside, reconnect the large and small intestines and hopefully he will be able to stool and eat more food. Right now he seems like he is not interested in food, he only like milk and his pacifier and lots of play time. He is getting more active everyday. I wonder what will happen when he started walking, I would probably loose weight from chasing him around with his 20 lbs of tpn and milk bag. Last night he is busy playing, he laughed so hard that made him vomited and he was up until 9 p.m. He had a great day with his grandma and grandpa. Today we are going to the Aquarium in Long Beach with his cousin and uncle. 

Leon is exhausted from playing around

Happy 4th of July

 What a long weekend in the PICU! Yes we just came home from PICU. Last Friday we are so excited to take Jordan at Coronado to watch the fireworks with him for the  first time. This is the same place we go every 4th of July, just hangin out and have a picnic with friends. Anyway, Jordan was having so much fun, after I gave him  his last bottle for the day,after 15 minutes  he started shaking and threw up all the milk. So we guessed the fever is coming and he must have caught a bug since we were sitting on the grass and it was 6 pm. Jordan usually home by this time and resting. We placed him on his stroller and he fell asleep after I gave him a massage on his feet to make him feel better and we wrapped him well. After an hour his temp came down and well as usual he is smiling again. He watched the fireworks for the first time and he loved it so much! He was amazed with all the lights and sounds. After the show, we headed straight to the PICU and they started to draw blood. After 24 hrs the culture came back positive. Jordan has the same bug called E. Coli from his intestine that grew back to his line. This infection is really scary and can could kill him. It frustrates us because it normally grow from his intestine and we can't do anything to prevent it no matter how much we are careful with his line. Jordan intestine doesn't have a mortality to block it as being a short gut though Dr. Boamah says this can be treated with some medicine just like the one we did few weeks ago (MUD Treatment) and since we only did it once we are going to continue to use it every 3 weeks, this will help to clean out all the bacteria from his intestine.  I noticed after the MUD Treatment his ostomy output has been low and our GI doctor is happy about it so she decided to increased his feeding. He is getting 15ml per bottle 3 times a day and 5ml continues feeding, also he can have more than 1 ounces of greenbeens. His weight is going back on track again, 15 lbs and 80z . 

At the Coronado Ferry Landing

With friends

Here he is first time he pulled by himself up!

Home  finally and he is crawling like a lion!

He's getting big!

Today was very exciting. First, Jordan did  actually crawled with his feet and hand moved forwards, he did at least two steps. We are so amazed and proud of him , who knows tomorrow will be the first day he will be crawling around the house. 

Second, he is now 15 lbs and 3 oz, 25 inches long yehey!!! he gained at least 7 oz in a week even though he's been so active lately and playing a lot, burning a lot of calories. I try to limit his playtime though because sometimes he worn out himself too much from playing and his body temp get little bit high around 89 to 99. We are trying our best to keep him away from getting sick because he will be having a surgery on the 16th of July. We want to make he is strong and bigger.

Third, Jordan got his big boy stroller, meaning he is ready to face and see the world! 

Jordan enjoying his new stroller and showing off  his two big feet hehehe 

Mom, I think its too sunny :)