Line infection #4 + Rhinovirus

Looks like I jinxed us. Within 2 days of celebrating Kenji being infection free...he gets hit with a fever of 102 and we were off to the ER at 3am. Kenji was admitted Saturday and we're still here. We're at Levine's this time. His blood cultures were positive for Staph and he has Rhino (common cold virus). He's currently being treated with antibiotics. His culture from the 20th is still positive so doesn't look like we'll be home this week. In the meantime, the doctors here are also trying to figure out why he has low blood sugar. Killing two birds with one stone? Lol. So, what they did was, let his sugar drop and draw labs then hook him back up to his tpn. Latest update is that not all results are in but one of the problems is, his body doesn't make enough/any cortisol (the stress hormone). That result will be further tested. Is the brain not telling the body to make cortisol or is the body not making it? Hopefully we get it all figured out during our stay here.

Let's Celebrate?!

I know it's been a VERY long time since the last time I posted on here.  I'm so sorry!  But today, there's no Dr's appointments and no work...Kenji's with his nurse and I'm catching up on sleep and "Me" time :)  

Nothing but good things has happened since my last appearance on here.  Shall we do a happy dance?  

Kenji is 14 months old today (10.5 months adjusted?).  We've been trying very very hard to keep him out of the hospital and infection free.  Kenji did however ended up needing a blood transfusion and had to go to the ER due to a high temp of 101 and a bad cough.  We took Kenji to Levine's this time and to our surprise, they didn't admit us! They drew labs and cultures and did xrays and gave him a dose of antibiotics and sent us on our way!  They said his labs looked normal so to follow up with his Ped and they will contact us if his culture should come back positive.  Since our last admission to the hospital with numerous line infections, we decided we will wrap ALLLL access ports.  And I will say it's been pretty successful!  We are infection free for almost 2 months now!  

Developmentally, OMG, where do I start!  Let's just say he's a quick learner for a 24 weeker.  He's not crawling YET!  But he sure is inching and pivoting around like crazy.  He sleeps in his room during the day when we have nursing but he sleeps with us at nights.  We bought a bed rail when he started to roll. Then we ended up having to buy a second rail when he started to pivot and inch around bc every morning I would wake up to find him turned upside down on the bed, head at the end of the first bed rail.  

Something like this!  

He's able to get up in crawling position and rock back and forth and...scoot/hop!  LOL  And he's so use to his jumper that when we try to make him walk...he jumps/hops around only.  It's so cute!  He's also like to stand at the couch and play with his toys.  ---> We have play stations for him bc he gets bored so easily.  There's the jumper, play mat and couch.  If all that fails, our other options are, play on the Ipad, go watch TV downstairs and/or go have a walk outside.

Kenji is to start oral feeds too.  Not so much for nutrition but for pleasure and stimulation.  He had a Swallow Study done and he didn't do well with thin liquids like formula.  I will have to thicken formula with rice cereal to a pudding or apple sauce consistency for him.  We will have Speech Therapy to work with him now too.

We celebrated Mother's Day with a family dinner.  I couldn't be happier!  But I don't think anything will ever beat my 1st Mother's Day present though!

Remeber this?  Kenji went from vent to Cpap on Mother's Day 2012.

And look at him on Mother's Day 2013!  My bundle of joys!

Kenji also finally got to meet his cousin Madeline, Auntie Tia and Uncle Meng from CA! 

And to end this post...LOL

Lots of smiles, giggles and love!

Thank you to all your thoughts and prayers!

Fun Day at the Park

Today is my 26th birthday, and all I ever wanted I have.  I have more than I ever deserved.  Thank you God for everything.

Kenji's Small Bowel Transplant Evaluation

We successfully made it to Pittsburgh Children's on our 3rd attempt.  Third times a charm indeed.
As soon as we checked in and got to our room (735) in 7B (ICARE), it all started.  Yes, the minute we got there, the evaluation process started.  Kenji was assessed from head to toe, had a EKG done and blood was drawn.  Various transplant team members dropped by throughout the day to meet and greet us.  We continued our week with xrays, unltrasounds, MRI, and daily blood work.  We also had a 2-3 hour educational session.  It made the whole transplant thing soOo much more clear.  At the end of our stay, the transplant surgeons told us that Kenji has only 8cm of bowel and about 45% of colon left.  The transplant team doesn't think that rehab will help Kenji with that little of bowels left and he wouldn't be a good candidate for STEP(a lengthening procedure); it would take more than 1 or 2 or 3 to procedures to give him enough bowels.  Transplant will be Kenji's best bet for a good quality of life.  We were also told that with his size being so tiny, the wait will be much longer than a adult.  Roughly, 18 months or so.  We are to travel back to Pittsburgh every 6 months for follow up till a donor comes available and after the transplant, Kenji will be expected to stay local to Pittsburgh for at least 6 months.  I will stay by his side during that time and Dad will drive up every weekend or so to be with us.  Dad and I have talked and during our wait for the transplant call, we will try rehab anyways.  Even though the Transplant Team doesn't think Kenji will benefit from it, we still want to try.  As of now, we have Boston Children's Intestinal Rehab center at the top of the list.  It's a matter of saving up money to make it there now :)

I will be opening up a "Hope" fund for Kenji soon.  We will use that account to assist with cost associated with both rehab and the transplant.  I will update again once that's in place.

Room 201 Pt. 2

We are home bound today! Kenji got his new broviac in on the 28th and Pittsburgh is still on. Our flights and hotel reservations are all made. Another piece of good news is that Kenji got approved for private duty nursing thru the CAPC program. Woohoo! Also, I created a Facebook page for Kenji. It'll be easier to keep everyone updated with his journey than finding time to write a blog post. Find him at Kicking It With Kenji - SBS Style. I will add the link later when I get on my computer.

Happy 1st Birthday, Kenji!

Today is Kenji's first birthday.  He is still in the hospital battling 3 bacterial infections and a fungal infection but that's not stopping him from smiling.  

So, with the line being infected with 4 different organisms, the line is considered "damaged" so it had to be pulled out.  And since Kenji is such a hard stick and his peripheral IVs don't last him very long, he ended up having a Cook Catheter put in for the time being till he gets a new Broviac.

Watch my baby grow!

Kenji, what will mommy ever do without that handsome, adorable face and those fluffy cheeks?  I love you booger!

And...

Yeah!  The other one has not cut through yet though.

Room 201 Pt. 1

Saturday (3/9) was a busy day/night for all of us.  Kenji went to bed around 10:30ish.  I was done with the night and headed to bed at around 1ish and he felt warm to the touch when I kissed him goodnight.  I took his temp and he was 102.4.  I told DH and we left for the ER.  Blood cultures and labs were done (like usual) and he was given a tylenol suppository to help the fever.  We were admitted and we didn't get a room till about 7am.  I was so mad and tired.  Like seriously?!  Kenji's blood culture grew a Gram Negative Rod bacteria (nothing specific yet).  So he's getting 2 types of IV antibiotics to treat that.  And today we find out his culture also grew yeast (nothing specific yet either).  AIYAYA!  So another antibiotic is added to the list. The plan is to treat it thru the line first for a week or so.  If that doesn't do the trick then his broviac will have to be pulled...AGAIN!  His blood count and platelets are dropping dramatically too bc of all the labs and cultures that's being done.  He will be getting a blood transfusion here in the next few hours.  Ok, that's it for now.  I will update soon.