Owen's catherization has been scheduled for April 6th. The day before he is going to go in and get blood work, xrays, and all kinds of other fun things for a 5 month old.
He hasn't been taking his medicine very well recently. He'll even gag himself to throw it up later. We tried putting it in rice cereal and baby food. Owen is not that easily fooled. So we still have to stick a syringe in his mouth and try to outsmart him. Sometimes he likes to wake up around 4 in the morning and talk at the top of his lungs for about 2 hours.
His bilirubin levels are constantly changing. One day he looks like a rubber ducky; the next day not so much. A friend that we met through one of the AGS sites told us not to worry about his color and just how he is feeling. It was very helpful advice. He's under enough supervision that if the day would come that he would need a transplant; we wouldn't miss it.
A friend of a friends baby just passed on this past week. I can't imagine what that must be like. You can check them out and offer them support at http://www.fretzfam.blogspot.com/

Owens' five month pictures started out okay...

He enjoys chicken just like his Dad...

Then things started to go south... fast!

When Owen starts to throw things... look out!

This is his "what are you looking at me for?" look. "Yeah, I pushed it out of the way"

And what's he going to do about it? He is going to cry like any baby would.

Owen loves his high chair.

Owen's GI doctor called today with his bloodwork results from yesterday.  They aren't too great...  All of his bilirubin levels went up higher then they have been yet and his white blood cell count is still elevated.  As long as Owen is fine they aren't too worried about his bilirubin levels.  I guess if he starts acting up or would get a fever then that is when they would be concerned.  I said to Ian tonight I just wish Owens bilirubin levels would come down and this whole liver thing would be a thing of the past!!!  Owen's liver functions continue to be perfect.  I spoke to his doctor about them doing a liver biopsy.  I told her that I don't want them doing one for no reason really.  They originally told us that if they did one it would be more or less so that they know what is going on, but they wouldn't be able to treat it.  So, I say why put Owen at risk???  It isn't an easy thing putting him under due to his heart condition.  I guess at this point they are still unsure if they will be doing a liver biopsy.  All of the doctors involved with Owen are going to have a meeting on Owen's case and see what the best way to treat him is. 

Specific prayer requests would be that Owen's bilirubin levels would come down and stay down and that his pulmonary arteries would grow as he grows.  If Owens PAs don't grow as they should this could become a serious thing.

~Ashley

We're Home! Usually Means... No Updates

Owen had his blood drawn this morning to check to see where his levels are at. We were scheduled for a cardiology appointment but, she said we didn't need to come in since we were just down at CHOP for a week. Luckily, there is a CHOP affiliate 15 minutes away from our house that does bloodwork.; they just put all the results in the network and our GI down in the city can review it all. That turns an all day trip into one hour ordeal.
 Today was Owen's last dose of his antibiotic. He's very happy about that. As are we. It's very difficult to get a baby to take five medicines at a time so to get rid of one is a great feat.
He still likes to hangout in the middle of the night. If you could pray that he would start sleeping more at night so, Ashley can get some sleep. She'd be very grateful! Yeah, yeah, yeah. I know I don't get up with him. It wouldn't do any good. He doesn't want me in the middle of the night. I guess I just lucked out.
 I got layed off of work last week. We were getting really slow and with Owen being in the hospital and not sure what the next week would bring we decided now is the time. I'm staying preoccupied with side jobs that seem to be popping up left and right. I should have enough to keep me busy for a month or more.
   Anyone get a census form yet? I did... It doesn't specify that you need to answer every question...

We're home! GI came in around 5:30-6 o'clock and said there was nothing in the blood tests that said we needed to stay. Infact his white blood cells and his bilirubin were actually down. They're going to do some cultures of Owen's blood to see if they can grow any viral infection. We'll have to go back again early next week for them to draw more blood and again on Friday for a follow up with Dr. Loomes. I think we have an appointment scheduled with our cardiologist on Tuesday so, hopefully they can do the labs then.
You can already tell Owen is overjoyed to be home. He's laughing and giggling and sucking on his hand as I type. He's learned to turn pages in books too.

We are hoping to get out of here today!  Owen needs to get blood work done, again.  He got bloodwork done this morning, but since he is so small they are only able to draw so much at once.  So, here we wait for Phlebotomy to come by again.  They are supposed to come between 3-4:30pm.  Although, this morning they left him for their last stop because they know he is such a hard stick and it takes them a little while to find a good vein.  Poor baby!  He won't need as much blood drawn this afternoon then what he got drawn this morning.  Depending on the results of the bloodwork we will be able to go home.  I guess if everything is about the same or better then they will send us home with very close follow-up.  Owen got his IV out this morning.  It was so red and irritated and you could tell it was really bothering him.  He also seemed constipated to me so I asked them to give him a stool softener and it really seemed to help.  He isn't so antsy.  Hopefully the next time I post it will be from home!!!! 

Please, continue to pray that they will be able to find a source of infection or better yet that his white blood cell count will go down to where it should be and that Owen won't need to have a liver biopsy!!! 

~Ashley

Well, Dr. Piccolli reviewed Owen's case and he isn't too concerned about his bilirubin levels are so high.  Apparently when you have a heart condition your kidneys do not function as well.  So, his body will take longer then your typical child with a liver disease to excrete bilirubin.  His liver function is excellent.  The only thing they are concerned about at this point is his high white blood cell count.  They are doing another urine culture and they are also going to be doing blood work tommorrow morning bright and early.  They are looking for a viral infection now.  They were looking for a bacterial infection.  If they can't find a source of viral infection they are going to want to do a liver biopsy.  You can pray that they can find a source of infection so that they don't have to do a biopsy.  The doctors said that they could possibly discharge Owen tommorrow, because it will take a few days to grow the cultures. 

Thanks for your continues prayers!

~Ashley

 Watching mommy update the blog.

 Our view of Center City.

With IV

Without IV

Stumped-Tetralogy of Fallot

Have I said yet that Owen has the doctors totally stumped?  Owen's ultrasound showed no signs of any blood clots.  Everything looks great.  There is only one more doctor to review Owen's case, Dr. Piccoli.  He is supposedly the best doctor for Liver. Owen's liver functions are normal but his bilirubin levels and white blood count levels are high.  Also, from a clinical standpoint he is fine. He has had no fevers, his heart rate, blood pressure and temps have all been fine. Owen is not being consistent with either Biliary Atresia or Alagilles Syndrome.  At this point they are thinking that he might just need to be on the antibiotic for a little while longer.  There is talk of sending him home, but they really hate to send him home without a more defiinative diagnosis.  I don't know what to think of all of this?  Ian and I continue to be at peace with all that is going on. We certainly are not putting our trust in doctors and remain trusting God as He is the only one that knows what is going on with Owen's sweet little body. 

The nurses here are great.  Except for the ones that he had last night...  They kept waking Owen up which in return meant that I didn't get any sleep.  They wake him and quickly leave the room so that I have to take care of him.  NICE!!!  His IV in his foot is about to go bad....  It is red and looks irritated.  I am pushing for oral antibiotics.  Earlier today the GI dr. said that there are oral antibiotics that are just as effective as the IV antibiotics.  So, we remain here until we hear back on what Dr. Piccoli thinks of Owen's case.  We have mixed feelings about going home.  We are happy if we get to go home, but yet we would like to have more answers. 

All of the doctors on Owen's case will be getting together within the next couple of weeks for a big meeting to see what is the best way to care for Owen.  Surgeons, Cardiologists, GI docs and the Liver transplant team.  The biggest thing is when do they need to do the heart surgery??  IF he needs to have a liver transplant will that effect his heart if it is unrepaired?  All things that need to be discussed.  You can pray that the Lord will give the doctors wisdom on how to care for our little baby boy. 

As always I will keep you all informed as we have more information. 

~Ashley

Owen's bilirubin levels went back up to where they were when he was admitted. At 4pm they will be doing another ultrasound to check the blood flow in and around his liver to see if he might have a blood clot.  You can pray that Owen will stay asleep until they do the ultrasound.  He likes to nurse every hour and he isn't allowed to eat for 3 hours prior to the ultrasound.  They don't seem to know what is going on.  Hopefully they can figure it out quick so that it can be addressed and we can get out of here!!!  We still don't know if they will be doing his catherization or MRI during this stay.  I think they might be thinking now to just hold off for a bit.  Owen's oxygen saturation levels have been hanging out around 97%.  They don't know why they are all of a sudden up so high.  They usually hang out at about 79%-84%.  The fact that they are as high as they are is great.  Especially in a baby with unrepaired Tetrology of Fallot (his heart condition). 

Ian went back to work today.  He is working a couple hours a day.  He isn't able to get a sleep room here nor is he able to get a room at the Ronald McDonald House so he is going home every night.  I have been hanging out with Owen.  He is still a very happy baby.  Except when they are poking him for blood, a new IV or not letting him eat. 

Did I say I can't wait to get out of here with Owen? This sunshine doesn't help sitting in a hospital 24/7.  I am looking forward to summer!!  Atleast we have a window room.  We can see all the hustle and bustle of the city. 

Thanks for your continued prayers!

~Ashley

Owen's bilirubin levels came down a little bit more today.  His white blood count is still elevated.  They aren't sure why it isn't going down since he has been on his antibiotic for about 48 hours now.  They will continue him on the antibiotic since it seems to be helping all of his other levels.  Although, they might change his antibiotic to something different.  Poor boy...  His IV came out so now they will have to put another one in..  I hate that!  He hates it!  I don't blame him..  IV's are painful! 

~Ashley

GI came in to see Owen first thing this morning.  They do not let people sleep around here!!!  I guess that is why Owen sleeps so much better at night, because they keep him going all day.  The day starting at 6am.  GI said that Dr. Flake reviewed the images from Owen's ultrasound and everything from a surgical stand point looked fine.  He didn't feel like they needed to go back in his little tummy and redo anything.  PRAISE GOD!  GI also said they don't feel like steriods will be the trick for Owen.  Owen has been nothing like they have ever seen.  They are a little stumped so it seems.  They are thinking at this point that he has cholangitis.  They are treating it with antibiotics through his IV.  Owen is also on Vitamin K through his IV and many other meds orally.  He is pretty pleasant all things considered.  There is talk that he might have his catheterization done since he is already here and also an MRI on his heart.  They still feel like he is stable from a cardiac stand point but they would like to atleast have some imaging to be sure that they can continue to hold off on his heart surgery for now. 

Ian was going to be staying at the Ronald McDonald house tonight until Owen is discharged, but when I called to make sure they still had a room available they said that they didn't and that we don't qualify because we live too close.  I am not sure why this is just now coming about when we have stayed there multiple times before.  It is a bit frusterating.  We are hoping that Ian can either get a sleep room here or can stay with his friend that lives here in the city. 

I will let you know when we find out the results from his bloodwork this morning.  Just continue to pray that Owen's bilirubin levels will decline and that we can get out of here! 

~Ashley

Here To Stay...

So... Owen didn't cry at all when he got his blood drawn this morning. He was saving his breath for when he got his ultra sound. He cried for about an hour and twenty minutes straight with no blue spells! Which is great for someone with TOF, bad for everyone around.The preliminary results from his ultra sound showed everything looked ok. His bilirubin levels are way up so, that wanted to keep him hear to sort that problem out. Dr. Loomes said one of the problems could be that the ducts around where the Kasai was performed could be inflamed and causing a blockage of the ducts. Which would mean they would start him on steriods but, the surgeon doesn't want to jump to that conclusion too soon; so they started him on an antibiotic to see if it is an infection. Since his vitamin levels are way down they started to give him vitamin K through an IV. We should see results from the antibodies in about 48 hours. If that doensn't do the trick then I guess steriods are next? We are in the CCU on the CICU side. we got our own private room which is very nice. Ashley will be staying here tonight and I'll be going home to get some things in order before coming down to stay at the Ronald Mcdonald House.  We're glad they started him on antibodies so we aren't just sitting around here twiddling are thumbs waiting for Monday to come when we can do all the testings.
 Carly was our nurse when we came in. {She was the nurse that got us out in time for the wedding}
GI wanted to do a cath but Carly remembered from the last time we were here that she was unsuccessful three times. She just held a cup there for about 5 minutes until he peed. Worked great.
 Dr. Natarajan came in after her day was done in the echo lab to check up and see what was going on. She said, any testing for his heart has been put off for a while now thanks to this visit.  She also said she's trying to see if Owen's genetic testing ever came back. She said it could take a few weeks to a few months to get it. That will help us get another step into a diagnosis.
Since it's going to be nice this weekend I'm thinking about bringing my bike down to ride back and forth from the RMH to CHOP.
Please keep Owen in your prayers.

Unexpected Visit To CHOP

We got a call tonight around 5:30 pm tonight about Owen's blood test. His bilirubin is elevated and vitamin D and K are really down.  They said his samples look clotted so it might just be a bad sample. But his eyes are more on the yellow side again and we were expecting his bilirubin to be the same or worse. We will be getting an ultrasound done of his liver to see if his ducts are blocked and hopefully they can tell us if his Kasai did anything. He has been throwing up atleast once a day for the past week. They are going to test him to see if it's a bug or something related to his liver. Another possibility is that his acid reflux is getting worse. Which might explain why he never sleeps for very long, always likes to sit up, and is cranky sometimes? We're hoping to get more answers tomorrow and not more questions! We would really like to have some closure on what his official diagnosis of his liver is too.  Owen is still generally a happy little camper. I think today is the first time I came home from work and he smiled without me having to instigate him.
I had a crazy week at work so I'm able to take of tomorrow and still have some overtime. I also have a super understanding boss who I can call at 6 pm and say I can't come into work tomorrow and get an "Ok, we'll be praying for you." Instead of getting a hard time. God really does work everything out.
 I've added a link for AGS on the sidebar if anyone would like to know more about it.
We'll keep keeping you posted and hopefully it won't be from a bedside at CHOP.

                                               - We don't blame God. We thank God.