Jason's weight changes

It's been almost 1 & 1/2 years since he had his first feeding tube (NG tube) and almost 1 year since he had his G-tube surgery.  Jason has gained significant weight and now his weight is more than 25th percentile.  What a change from less than 3rd percentile!

Jason at birth weighing 7 pound 10 ounces, more than 95th percentile for weight~

 Jason around 3 months old.  Still growing well gaining weight nicely!

    Jason around 4 months, still chubby and cute! weighing little over 14 lbs

After his first NG tube, 8 months old, in February2008.  He stopped gaining weight since 4-5 months old due to feeding refusal.

When he was around 1 year old.  He was so thin.. his doctor said Jason was all bones and skins.  Look at those chicken legs.  He had G-tube inserted into his stomach when he was 13 months old.  By this time, his weight was off the growth chart, below 3rd percentile.

 and now at 24 months old, weighing 27.5 lbs.  Thanks to GJ tube!

Chemotherapy cycle #2, week 1

Today was one of the longest clinic appointment ever!! We got to the Childrens hospital at 8:00 am and left there at 4:00 pm. Almost 8 hours in the clinic/hospital today.. hew, talk about being exhausted!! So we left home around 7:00 am and came home little after 5:00 pm. The reason for such a long clinic visit was because Dr. Yaun wanted to have another CT scan before receiving today's chemotherapy. Dr. Yaun came to oncology clinic to check whether Jason's surgical wounds are healing well or not before he receivs chemotherapy. And I told her that Jason is still vomiting and retching frequently.. and Dr. Yaun was concerned because there is always a possibility that subdural hematoma can happen again. Even though last week's CT before discharge was good, she wanted to check again to make sure that it's not the recurring subdural hematoma that make Jason vomit and retch..
So arranging for CT and waiting and getting the CT scan done took about 3 hours and while CT is obtained and result is back Jason's chemotherapy was on hold.. Finally around 2:30 we got "OK" to go from Dr. Yaun and oncology clinic staff (they said CT scan looked very good!!)..So he received carboplatin and 1/2 dose vincristine today.
The oncology nurse practitioner gave us order for the physical therapy (3-5 times/week). I will have to make arrangement for this next week.. I am so tired now...3-5 sessions of physical therapy per week might sound alot but my insurance only pays for 2 consecutive months for same condition/diagnosis per calendar year (doesn't matter how many sessions, just "two consecutive months"), so I have to get the most out of it. Last time when Jason was discharged from hospital after 1st surgery, I didn't know about this policy and we wasted 1st month by missing appointments and stuff.. and only got 4 weekly sessions and even that 4 sessions, Jason didn't cooperate too much so we didn't get much done.
Maybe this time, I will go for 3 sessions per week and after 2 months, if Jason needs more time, then I will have to appeal to my insurance company for more time.
Well, with intensive physical therapy, hope Jason can walk again soon!!

Old video clips of Jason...

Jason at 13 months old-cleaning sister's room w/ Swifer



Jason at 15 months old-walking around w/ his feeding pump in a backpack



Jason at 17 months old -dancing!





Jason...when are you going to stand, walk and run again??? T.T
I miss those old days..please God..help Jason walk again...

Surgery today and maybe coming home tomorrow!

Jason was taken back to OR this morning to take out external subdural drain and put a new VP shunt in.
His subdural hematoma (blood collection) is almost gone and Dr. Yaun decided that it was safe to take out the subdural drain.  His VP shunt was replaced with a new VP shunt.. this time it is a programmable shunt.  So in case, subdural hematoma or CSF collection occurs again (unfortunately, there is always a possibility that it may happen again....) then they can adjust VP shunt's flow to help minimize subdural hematoma/fluid collection from getting larger, I think.  ^^
Anyways, today's operation went well, thanks to Dr. Yaun.  Jason came out of OR with 3 sutures.. one on the new VP shunt site, one small one from closing the subdural drain and third one on his belly (end of vp shunt).  Hopefully, these sutures will heal soon. 
Jason will have one last CT scan tomorrow morning and if this shows everything is good then he will come home tomorrow!!  yay!

Happy 2nd Birthday Jason!

Today is Jason's 2nd birthday. Too bad that he is in the hospital on his birthday. No birthday cake, no presents, no birthday party...T.T
I sang the Happy Birthday song at Jason's bedside this morning...made me a little bit emotional and I almost cried. hehe.
Jason, let's have a big celebration on your 3rd birthday. I hope by then, you will be able to eat your birthday cake and some Miyuk-gook!!

Jason is doing alright. Last night, he was having some nausea issue and vomited and retched several times. Dr. Yaun said it might be due to increased pressure from not draining too much from his ventricles (thus increased pressure in the ventricles) but she wants to keep this way for little bit longer so that fluid & blood collection in the subdural space can be drained as much as possible. Yesterday's CT showed that this fluid/blood collection got even smaller but there are still some left. He will have another CT scan tomorrow and hopefully, it will be even smaller... then on Tuesday, Dr. Yaun will take him back to OR to finally put the VP shunt back in. If everything goes well then Jason can come home on Wednesday. =)

Out of ICU and recovering

Jason came out of PICU yesterday afternoon and he's moved to neurosurgery ward.
He's doing alright but since he has lots of lines and specially two drains from his brain, he was put on soft restraints to prevent him from pulling these lines.. basically his wrists are tied up to crib rails only allowing little bit of movements.. and he's wearing soft arm braces so he cannot bend his elbows and reach for lines. poor baby...
Last night he woke up and acting very aggitated, wiggling, sliding, kicking etc every 1-2 hours.. of course, both of us (Jason and me) couldn't sleep well. He got morphine, tylenol and valium to help with pain and aggitation but they only helped little bit.
I asked Dr. Yaun why radiologist did't say anything back in April about small fluid collection shown on MRI.. and she said, they notified her of the finding.. but back then it was not significant to do any intervention.. so she told the oncologists/radiologist to just keep monitoring with regular MRI.. and boom! within 1 & 1/2 month it got much bigger causing problems now...
I love Dr. Yaun, Jason's neurosurgeon, she's a such a wonderful, kind and very loving/caring doctor. Always explains things in details, will go over MRIs, CTs very carefully.. she's just wonderful doctor! ^^
Dr. Yaun said Jason's subdural fluid/blood collection is almost gone, it's putting out very little drainage right now.. meanwhile, they clamped the VP shunt to block CSF from his ventricle that way, it creates pressure in the center of brain and pushes brain outward so subsequenty will help pushing the blood/fluid from subdural space.. but if this pressure goes too high then Jason will have problem so they will have to open VP shunt again..
Since Jason had rough night last night, doctors thought maybe it was because increased pressure from clamping VP shunt.. so they opened VP shunt again this morning to relieve pressure from the ventricles..but then this may cause build up of fluid again in subdural space.. so they have to monitor closely and play with clamping and opening of both VP shunt and subdural drain..
so tricky and complex..
anyways, when everything is ok, that is.. most of the fluid/blood drains out from subdural space and pressure in ventricles can be set to normal again.. then Jason will have to go back to OR to put the VP shunt back in his belly..that will be prabobly on next Monday...then hopefully he can come home...

Back in the hospital...another surgery...

Jason is in the Childrens National medical center again..T.T
Yesterday afternoon, he developed intractable vomiting.. Jason usually vomits at least once or twice a day so vomiting is not something new to him but yesterday, he was vomiting and retching every couple minutes..
and he was way more fussy and irritable than usual..
So we decided to take him to ER and we took him to the Childrens hospital ER because they have all the medical record.
Because of his complex medical background (brain tumor, VP shunt, chemotherapy) we could get into the exam room right away without waiting.
They did head CT to rule out VP shunt malfunction and found a fluid collection in the right subdural space (that's space kinda between outer brain and skull). They asked us if Jason recently had any head trauma (falling etc) but he didn't.. and we couldn't think of any head injury.
Later, Dr. Yaun from neurosurgery who did Jason's first 2 surgeries explained that when a vp shunt is placed to drain fluid from brain ventricle (center of brain), the pressur is relieved and the once squished brain will resume its shape and size over time.. and sometimes it can create a space in the outer brain, and cerebrospinal fluid (CSF) can build up there, and small blood vessels can pop as brain expands again, and cause some bleeding causing build up of blood and cerebrospinal fluid in that space..
She said on MRI done in April, there was a small fluid collection shown also (I guess oncologists didn't catch it or didn't think it was significant at that time?) but now the fluid collection gotten so big (3cm) pressing on to the brain causing Jason to vomit, and become more irritable and feel sick..

So, he was taken to OR this afternoon..and had a surgery to put an external drain to get rid of this old blood/fluid collection from subdural space.. also his VP shunt was externalized (taken out of his belly) so that they can control the CSF flow from the ventricle, while draining fluid from the subdural area.. I guess a delicate balance has to meet between these two spaces to minimize side effects.. Once the blood/fluid from subdural space is all drained, then doctor will put back his VP shunt into Jason's belly again.. that's another quick surgery 1 week down the road..
He did well during surgery and he's currently recovering in pediatric ICU. He will probably stay in the hospital for about 1 week..
So much for little Jason to go through..T.T
I hope this will be his last brain surgery...T.T

ps. Dr. Yaun told me that she was very impressed that his main tumor in the ventricle gotten so much smaller on today's CT scan. At least we have one good news today...