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.

Feb Recap/Update

I can't remember what day exactly that we came home from my last update but we were not even home for a month and he ended back in the hospital due to a cough and a temp of 102 on 2/16.  The doctors were pretty sure it was another line infection bc that first day, he tested negative for RSV and his xrays didn't show any signs of pneumonia.  So, Kenji got admitted and the blood cultures started.  After 3 days of a negative cultures xrays were repeated and sure enough, pneumonia was present.  Then on day 5, he was tested for RSV again and was positive.  I hate thinking that he caught it in the hospital but whatever.  We ended up staying there for a total of 6 days.

All that sounds like no biggie but this hospital stay was one of our worst experience yet.  

Our first night, Kenji had a TPN overdose.

So, the nurse was priming Kenji's TPN to get rid of all the air bubbles in the line before hooking it up to Kenji.  After she hooked it up to Kenji, she left.  Daddy was holding Kenji bc he was fussing a lot.  After about 15-20 minutes, Daddy told me to check his blood sugar bc he's not acting normal.  His cry was different and it seemed to get weaker and weaker and so did his body.  I tested Kenji and his sugar level was 582!  I did it again just a few seconds later and all I got was "HI" (so his level went off the chart!)  We were a bit confused as to why and what was happening.  Daddy pointed out why the TPN volume was over 2000.  I then noticed the rate was set at 545ml!  His normal rate is 45ml/hr.  So he was getting more than 10x his regular rate.  I figured the nurse forgot to change his rate after priming the line.  I ran and grabbed a nurse.  By this time, Kenji was out and not responding to us.  The nurse placed his TPN on hold and went to call our nurse and the doctor.  He started to respond again after about 5 minutes.  The doc was going to give him a shot of insulin but she didn't bc we didnt want to create another a\problem with Kenji's sugar being too  low.  So, his TPN was turned off and we just let Kenji recover on his own.  It took him about 4-5 hours to normalize his level.  Then his TPN was hooked back up at it's correct rate.

So, with in 30 minutes, Kenji received about 5-6 hours worth of TPN.  That probably equals a bag of lollipops?  or a few pounds of sugar?  **shaking my head**  He recovered after a few hours but it took his body a few days.  After that incident, Kenji could barely move his hands and feet or grasp anything.

Can you say "Super Kenji"?  LOL

Other than that update, Kenji is doing great...especially with the new broviac.  He's so much happier...infection free.  We are still working with PT and OT on his developmental skills.  

I'd love to update more but it's so hard when we're in and out of our "2nd" home.  

Broviac #3

Kenji got his 3rd broviac put in yesterday.  He's doing well.  We'll be here for a few more days for monitoring.  Kenji's having some thyroid issues so they are monitoring his calcium levels too.  Thanks to everyone for their continuous prayers!

Farewell 2012 and Hello 2013! Much needed...Update!

2012 was one hell of a roller coaster.  I need time to heal from everything that occurred but Kenji's my primary focus right now.  I will get my time once Kenji's health and medical condition is under control.  I hope 2013 will bring nothing but health and prosperity to everyone... especially Kenji.

So my last post, Kenji was still in the hospital being treated for Staph.  We were there for about a week then was discharged home and to continue his antibiotics every 6 hours at home.  Well, not even a week and we ended back in the hospital again when he spiked a temp of 103 again.  Labs and cultures were done and he was put back on multiple antibiotics again.  Come to find out, this time around, he has a yeast/fungal infection.  With this being his 2nd line infection within less than a month, his broviac needed to be pulled.  So, Kenji was transferred to the PICU, sedated, picc line inserted and broviac pulled.  After he was stable he was transferred back out on the floor.  Kenji spent Christmas and New Year at Presby Hospital in room 212.  A week passed and his cultures were still positive for yeast...and now Staph too!  His Picc line had to be pulled now too in order for the antibiotics to clear the infections so 2 peripheral IVs were put in...one in his neck and one in his right hand (that didn't last but a day) and now in his left foot. 

Due to the circumstances, our PA trip was once again cancelled bc the Peds are saying we will be here for a good 2-4 weeks.  A new date has not been set as of yet.

Pleaaaassseee...say a prayer for my sweet boy.  Thank you!
I'd also like to thank our nieces and nephews for spending the holidays with us at the hospital.

Merry Xmas from Kenji!

Happy New Year's Eve!