Sunday, September 28, 2008

He is becoming a big boy!


This is one of Jordan's new favorite toy, we call it "red bambol bee". Every 5 pm after his TPN done, we take him outside for a walk. You should see his face whenever he rides in his car...a huge smile!

Daddy's trying to teach him how to hold on the steering wheals and then honk 
I think he gets too excited that he forgot what daddy just taught him hahaha

Jordan is surely growing so fast, new skills he can do is pushing the walker, he received a gift  from his nurse Ellen, its a push walker and he loves playing with it, he is walking around the house pushing the train, he also likes to play around the dining table, cruising around it. Every time he fall he will get up and walk again. I am still adjusting on his short hair though. He looks like more of his daddy now. 

Update about what's goin, Jordan continues getting his fungus antibiotic ( 21 days more, infused for 2 hrs). We are back on actigal and he gets that twice a day. He can eat sweet potatoes and butternut squash (1 ounces a day) but I think he likes sweet potatoes so we tried to stick to it and greenbeens. When we started feeding him 4 months ago he did really good in eating but after we came back from UCLA (we kinda stop feeding him bec. of the surgery) when we came home he lost his interest of eating food so right now I ask for a therapy that will help him to eat again. Whenever I feed him he doesn't open his mouth although he does eat the food. Luckily our regional center were able to find us a therapist (from Sunny Day program school)  that will help him to eat. The therapist will be coming to our house once a week for one hour and would teach Jordan how to eat and help him to development other skills as well. I think we'll start next. 
Last Thursday we had an appointment with Dr.Boamah our GI doc, good news we weight Jordan and he is about 19 lbs and 6 ounces  yehey he gained 6 ounces in a week! I am happy he made it 19 lbs on his birthday. Although he didn't grow that much his length is only at 27 inches. Anyway, Dr. Boamah told us that she is planning to feed him more, since he is getting bigger we should try to do the bolus, like I think we can feed him more of solid food then we can reduce the TPN time. Ahhh this is another exciting thing to look forward. Jordan is getting 8cc per hour continous feed and 15cc of bottle 3 times a day. We will watch his output this weekend and if his output looks good, on Monday we can increase it to 9cc. by the way his stool is getting regular now, 2 to 3 times a day which is a good sign that his colon is working well. His ostomy bag had been behaving lately, what I usually do now is  I change it every morning and before he sleep at night to prevent the bag from leaking or getting worn out. Ah thanks for a little break, hope it will continue to stay like this, but anyway have I mention now that he is more active, he sweat a lot and whenever he sweat his broviac dressing comes off too...we've been changing his broviac dressing almost every day. Dr. Boamah told me to try the adhesive to keep it seal, it work but there are some spot in the dressing that is still coming off. I am a little worried about this, I hope he doesn't get infection from opening his dressing. I would appreciate if you have any suggestions on how to keep it seal and safe.  

So far Jordan's has been good, stable temp and he is just a happy baby. The only another down side is he got cold, a very stuffy nose and he is caughing. Im trying to treat it with Vicks vapo, every morning and night I rub it on his chest and back and we also got a vicks vapo steam, it helps him to breath better, every night we turn it on and put it on our bedside, its like we have a little sauna with the scent of Vicks. 

Saturday, September 27, 2008

Grateful


I love this picture of my son, very meaningful. I think of this picture as if my son is trying to reach on his bright future and at the same time this picture remind us what a eventful year he had and he succeeded. I am grateful that we are able to celebrate his first birthday. I am grateful that we are home with him. I am grateful with all the people who cared and prayed for our son. I am grateful with all the medicines he receives everyday, doctors and nurses cared for him. I am grateful to all our families and friends, they are very supportive and understand us and his medical care.  I am grateful God is always with us.

Friday, September 19, 2008


Happy 1st Birthday Leon Jordan!!!
September 19, 2007 at 12:35 am 4 lbs & 17 inc.

Here's Jordan a minute old :) 


And here he is now after 12 months filled with love, joy, hope and faith 

Did I tell you Jordan got a new hair style, I finally got to cut his long hair




Thursday, September 18, 2008

This is what he's been doing while we are in the hospital
Playing and exploring a lot of new things

This is one of his favorite toy in the play room
He is like a monkey, trying to climb up the crib and could stand as long a he wants



I think Jordan would be a captain or a pilot someday, he love this wheel, he thinks he is moving


He is learning to start to eat all by himself, he loves to play the spoon and biting the plate


This is his favorite page in the book, he likes color green and yellow
He got his new broviac catheter today and he recovered pretty fast, doctor sent us home this afternoon! Yep we are home yehey!!! Jordan got so much present from the doctors and PICU stuff, they even decorated his room yerterday with banners and poster for his first birthday. Before we left we had a little celebration for Jordan's first birthday with a slice of cake and a cookie for everyone.
Our little champ is home with us and we are going to celebrate his birthday tomorrow.

Wednesday, September 3, 2008

Bye old catheter, hello to new line yet

The past few days Jordan temperature have been stable, no high fever for 3 days so we are thinking that the yeast is actually going away. Yesterday, he had a blood transfusion and after 4 hours of transfusion he got a fever of 103! Doctors ask for blood culture to check if the blood transfusion causing the fever but this morning the test came back positive for the fungus bacteria. It is still in the blood and sad to say it grew to his catheter line. Doctors been trying to tell me that they might replace it soon but Im not expecting its going to be today. We are supposed to wait for one more week before they decide to replace it but because Jordan had a fever yesterday its clearly that the anti-biotic he's receiving is not enough to kill the yeast.

The plan today would be remove the old broviac catheter and just give him a PICC line. Wait for couple of weeks to heal and kill the yeast before they place a new line, maybe about 6 weeks. Meaning we might go home without a broviac line and instead a PICC line. The first thing I thought about is since Jordan won't have a broviac line, we can give him a real bath in a tub and he can have a chance to play in the water...yoohooo! Now we are excited to go home.

Now back to reality, Jordan had his broviac line removed today at 2:30 pm, we got the chance to walk with him all the way inside the O.R room, he was playing and looking around. Once the Doctor started giving him the medicine to sedate him I can see how he started to fall asleep and still trying not...looking at me and then he closed his eyes holding my hand. We gave him a kiss and me...oh gush I feel like this is our first time in the O.R, ( about 3 times) I have tears all over my eyes... Im just really stress and can't believe he's going back to O.R again and he's gonna have another broviac line. Geoge told me that it's about time to change it anyway cuz he had at least 4 line infections(came from the gut) and he had broviac line since he was 4 months old. We are so careful on caring his broviac line, as much as possible we want to keep this line as long as he need it. After one hour the nurse came out and she told us that the IV line on his hand came off literally so they have to do another line since Jordan will be needing it. I said ok since he is sleeping. OH gush another one... this time they put on his right ankle. He did really good after the O.R. He was smilling at me and a little bit sleepy. He slept for two hours after he woke up, there he is full of life. Standing up and crawling around, about 8pm while we were having dinner, Jordan was lying down in our bed when I noticed there's blood all over his legs and as soon I search where it's coming from...its from his new PICC line. The line came off literally! We called the doctors and they told us they don't have a choice but to take him back to O.R and put another line. This time it's going to be on his groin like in between his thigh, they really have to sedate him. Finally after an hour and a half he is back to our and was crying loud. I think he is really mad. It's so hard to put in sleep and he feels very unconfortabel with the wrap on his legs.

Another plan came up now, we need to have a least 5 negative blood culture before they change his anti-biotic to much lighter (the one he is getting is very strong). We will wait for 14 days before he gets his new broviac catheter. I talked to our GI and told her that would it be possible we can go home before his birthday and she said it is and keep the date we have for his party, which is on the 21th of Sept.

We are so tired right now. Please keep your prayers for our son that he will continue to fight and get better very soon. Thank you to all!