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!

Infection, bacteria and virus!

Hi to all! I apologized for not blogging in a few days. Things are not going well with our little champ. Jordan was positive in klebsiella infection, it is a bacteria that came from his colon and had excaped and went to his broviac line, we are threating it with anti-biotic called Cexrophine (not sure the spelling). We got discharged last Monday and will continue to give it to him within 10 days. Two days after being discharged, Jordan spike up a fever of 102! I really don't know why he has a fever so we decided to take him back to the PICU, maybe it could be another infection or something else, but that can't be, he's on anti-biotic...oh well.
Anyway, we've been in the PICU since Wenesday. Jordan is still getting his fever on and off until now up to 105! Whenever he get his fever he gets little fussy and had hard time to breath, very unusual for us cuz he never had a breathing problem before. Doctors suggest to do all kind of test like urine, nasal congestion and of course blood culture.

There are two test came back positive, the first test is called fungus bacteria. Since Jordan have some small rushes on his lower abdomen between his left thigh (first skin rushes he had for long time), we are thinking this could be one of the reason why he's still having a fever. The fungus bacteria grew in his blood, very scary to think of it but come on who would think of a small rushes on your baby skin could cause a fever! I guess if you have a very delicate child you really have to be extra-precaution, if you see something weird on his body, skin, or even just when baby is sleeping call a doctor right away. We added another medication for him to treat this bacteria called Amphotericin, and this one goes to his IV line instead. They placed the IV line on his right arm, amazingly Jordan can still be able to sit down by himself and pull himself up, thats how strong his arms and hands.

The second positive test is called Respiratory Syncytial Virus (RSV), this is causing his breathing, if you listen to him, he sounds like he is congested and have a very stuffy nose (not looking like he's having an asthma) a little caugh too. Doctor said this type of virus usually comes on fall like October and November until spring. Oh well Jordan caught it first than anyone else. I knew I shouldn't leave the window open at night, I've learned my lesson. There's no medication on this one. Doctors just want to leave it and just keep him away from any germs meaning we are back on wearing isolated gown and he is not allowed to go out side of his room. Is this virus could be causing him a fever? we don't know yet. We still have to wait and see how he would react when he get a fever and no tylenol were given. So far the last fever he had was two hours ago and it just went away without the tylenol and he wasn't fussy at all.

This is what I am thinking, because of Jordan having a klebsiella infection recently. Base on my research this type of infection can usually get from the hospital and if you get it outside the hospital it is called klebsiella phuemonia. I think this is why he got the RSV. His immune system is so weak that he could get virus easily.

With all this infections, bacteria and virus growing on his blood at the same time makes me worried. The first time I cried and worried about is when I found out he had E.Coli ( two months ago) The rest of our hospital stay I didn't worried much cuz I know he will get better. But right now its been 4 days and yet he still get high fever. I am worried and every single day I cry thinking my baby is getting sick. Will he get better and when? doctors wants to see negative culture first before we go home.

On a bright side...even though George and I are stress we still try to keep our faith and keep our positive outlook in life. We are still excited on his first birthday. Thank God for Jordan strength, he always make us happy and laugh. He just learned how to clap his two hands, before when I clap his hand he would do the same thing to me like he would hold my two hands to clap. but now he claps when he's watching t.v or if he see something funny especially when he see us smilling at him. He also talking more like dada, dada and more daaadddaa and sometimes he say mum and brrrrr. When he doesn't have a fever he just want to play with us and always try to impress us with his new skills. I love it when he does something new like one time I can't believe he just bend over his kness and laugh hard. I think he likes the view upside down.

I hate E.Coli

We had a long night last night. Poor Jordan he was running a fever at 12 midnight and was really fussy. I knew he is going to get sick again. So we rushed him to the PICU. They did blood culture and urince culture...ofcourse Jordan wasn't happy with all the needles. We almost finish about 6 am and went back to our room when doctors started doing their rounds, Jordan was up all night until 8 am! He started shievering and his temp spiked up 104. Oh gush another infection is back.
We gave him Tylenol to help his fever go down and as soon as he settled in he went to sleep. Right now doctor said that the culture seems like their is bacteria growing and they suspect it might the E.Coli but we will find out deffinitely tomorrow.
Two hours later and Jordan is feeling better. He is back to his normal activities...cooing, crawling and standing up. This boy is really amazing!

Happy 11th months old!!!

Mommy baked this for me chocolate fudges brownies with a lot of icing!

Im a big 11 months old baby!!!

I love playing, I could play all day 

I feel like we've been so much blessed for the past few weeks. Thank you God!  Jordan has been good, no fussy or fever! Although we are still very careful especially on keeping him away from infection. With all the Ostomy bag leakage and sometimes his caterer keep pulling down, it is always still scary for us. I hope he will continue this and just keep growing big. You should see his chunky legs :)

So today, I decided to make something special to celebrate our son's 11th month. I bake brownies and I actually burned the top ( never broil it...)ahhhhh what am I thinking,,, but anyway good thing I had some frosting and candies so I removed the burned top part and put a lot of icing instead hehehe. Luckily, my hubby and our friends like it better. Also I cooked some bake macaroni (my specialty, it reminds me home in manila) and some pork steak. Yum yum yum!

To our son, Thank you for being a fighter and believing! You amazed us each day with your strength. We love you soooo much!!!! love mom and dad!

Who's crawling and walking?

Here are some of the pictures we had when we were in L.A. After surgery Jordan had been feeling better. Thank you so much to all of you for your love, care and prayers. Truly God is always there to watch over our son!

Check out my two bottom teeth :)

Playing with cousin Josie

Happy Birthday Daddy!!!

At the Aquarium

Finding Nemo

3rd day after surgery he is already playing

LUV!!!

Update- The past few weeks Jordan is getting better on his knees and legs. He is crawling around the house and sometimes I have to keep my eyes on him make sure he doesn't leave  his TPN bag. He is also getting ready to walk! We got him a walker and the first time he used it he was going backward...since then we always try to walk him around the house and I leave him in the walker once in a while and he is getting better,  also he could stand up by himself without holding anything for a second. So proud of our little champ!

Jordan had an Iron infused last Monday  and he did really well. He got rosy cheeks again and feeling much better. We will start doing it every week now. We increased his feedings and we started the MUD treatment again to clean his guts and to keep away the bacterial overgrowth.  

Ah Jordan is getting big and heavier too. His birthday is so close and we are preparing for the big day. We've already found a location were we will be celebrating it with families and friends and I can't to send out the invitation to everyone. In the meantime  I am still thinking about the party theme. Here are some of the theme on my list:

A. Circus and clowns

B. Lion and Different animals

C. Toys and Cars 

Please help us to decide which are this 3 list are more fun...I think they are all heehhehe....

We saw poopy!!!

Our prayer had been answered! Yes, he finally poopy today! Awhile ago while  I was busy preparing food for George's birthday. Jordan was really fussy, he won't seat on his swing or even play or hangout with other people, he just want me. So I decided to take him up to his room and change his diaper. When I grabbed him I kinda smell something and it stinks and Im thinking "did u poopy Jordan?" hmmm well maybe its something else and when I changed him I was surprised when i found it on his diaper. I called George immediately and showed it. We look like we had won in the lottery for excitement, we were dancing around wheee!  This is the first time since he was a month old, of course it is a good sign that his colon is working right! A wonderful gift for daddy's birthday hahaha.... good job Leon!!!

For the past weeks, we've been busy hanging out with our families in L.A. Leon anxiety with stranger or unfamiliar face are really not so good. He cries and get fussy, he just want me or daddy but sometimes he just really wants me. I am not happy about it because I can't leave him or I can't do some errands. Some tricks we do sometimes so he get familiar with the other person is we play with him or we introduce the person who wants to hold  him like his grandma or papa that way he could feel safe but sometimes  it doesn't work, he knows right away if its different people. He will cry like he sounds like he is in pain :(

 

Last Friday, we came back to UCLA for his follow up check up. Everyone are happy to see him and also Dr. Farmer , he was impressed to see Leon wound had healed quickly but he is not impressed with Leon Ostomy. Unfortunately it is a little push out and every time he cries it push out a little bit more although it doesn't look bad like before but  we still get crazy and frustrated sometimes when Leon cry so hard. Dr. Farmer said the good thing about this is you can push it back in and the best time to do it is when he is sleeping. Hhhmmm we never thought that before but we will try it when the ostomy got push out more. But right now we are not

 touching it. Another down side is of course the never ending change of ostomy bag. I really hate it when I run of supplies, its so hard to keep his bag sealed on his skin. I've tried probably 6 different bags and yet the best one is his newborn size bag (ref 3778). Sometimes though the bag stay at least a day or two depending on how much he move and play. Oh well in regards of his ostomy supplies I really need to change the amount of items of ostomy bag he is getting and I will call the health care provider tomorrow for follow up. We will see Dr. Farmer again in about 6 weeks.

Anyway, tomorrow we have a check up with Dr. Boamah. She is excited to see Leon and his new site of ostomy.  I am excited too because we are going to weigh Leon and talk about new foods for him. Hopefully he will be able to try something new and may increase his feedings too... cross finger. Oh yeah last night while unpacking his clothes I decided to put away some of the small ones and put it on the upper cabinet when suddenly I found some big bags full of his old clothes, when I opened it, it  was his preemie and newborn size clothes and suddenly I got teary eyed. I was just thinking of  how small he was and these are the clothes that he wore when he was still in the NICU. I can't believe my baby is growing so fast :(. Fra

nkly I treasure each day with him especially our play time together, when I bath him, when he try to impress us with his new stunts which is by the way he could seat up by himself now and crawl at least 2 to 4 steps ( thank God not all the way just think about his bag would be left out).  I don't want to miss a thing (like they say). I love when I put him in sleep, it is the sweetest feeling, hug and humming a song to make him fall asleep. I love just every moment with him. By the way our little champ will be turning 1 year old next month unbelievable!!!

First time in the beach, he loves sand at Santa Monica Beach 

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.