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.

We had our first appointment with Dr. Loomes & Dr. Menard-Katcher today. We sat at a dead stop for a half hour on 309 while they plowed it. We left an hour early because of the snow and we made it right on time.  No one else seemed to be on time because we had to wait quite a while for the Dr. That's alright though because we had alot of paperwork to fill out for the research study and since it was our "first time" at GI; we had to fill out alot of stuff for them too. Dr. Loomes said there is evidence that supports Alagilles Syndrome and they want to do some gene testing {which we thought we already had done} to see if they can find anything. Apparently one of the geneticists at CHOP discovered the AGS gene mutation and since Owen is such a unique case; they want him to look at everything and get his opinion. We're thinking they don't really know what they're seeing because it looks to be both BA and AGS which seems like no one has ever heard of. I tried googling it and couldn't find anything on both of them linked together. We should get his bloodwork results back sometime next week but, they're not expecting much change since he is still so yellow. They said with AGS it could take months for the yellowness to go away and that complicates saying if the Kasai was a success or not. So we will be going down there for follow ups once a month on top of going down for cardiology. They can't seem to get their schedules in line with each other.
Owen is a whopping 10 pounds 12.5 ounces and 22.75 inches long and is wearing 3-6 months clothing.
  I heard a rumor on Thursday that Owen was getting his catherization done that day. That is not true. He will be going in for a heart catherization within the next month. Of course they want to have the best Dr. to do it and all that jazz. I think they just tell you everyone's the best so you feel better.
 I was able to buy a point and shoot for Ashley with our rewards points on our credit card. It's super small and perfect for putting in your pocket or keeping in the diaper bag. It's supposedly one of the fastest point and shoots on the market. It was between this one or another Panasonic but, this one was alot smaller and cheaper. You'll also see Ashley's new baby carrier. Owen would over heat in all the other ones and he couldn't look around which as you can see he loves to do.

That's just a couple of the pictures we've taken with it so far. We like it. It has face recognition on it. If we take a picture of Owen it will tell us how old he is in the picture. It also has video and you can record your sound over a picture.

We've been staying pretty incognito the past two weeks and probably will stay that way for a while. There seems to be alot of sickness going around and we can't risk getting sick. Owen has to go to CHOP if he has a fever above 100. Which we don't need any unplanned trips there. We are there enough.

Ashley hasn't been too impressed with our pediactrician so the last time she was there; she was scheduling her next appointment before she went back to see the Dr. and asked to see a different Dr. next time. So they went back and the Dr. came and and said, "So I hear you want to see another Dr. next visit, any reason why?" Obviously a very awkward situation calmly averted by Ashley. "No... just like to try different Doctors..."