My dad and I went down to CHOP tonight to visit Anna. She is doing better...  They took all of her tubes out. She is still on a breathing tube and has one IV in. I think her mom said that one was getting infected; which would explain her fever. They're having a hard time getting her to eat. If they could get past that and her fever breaks they'd be able to go home in two or three days the doctors said! My dad talked to Dave on the phone and he said, "That praying really worked!"  Steph said it's very lonely being there and she was very glad we came to vist them. She cried when we prayed for them.
 Thanks to everyone who brought us meals this week. That was a load off our backs since, Owen needed lots of attention as he was healing. He is doing much better. He doesn't even cry when we change his diapers now.
Here's a fun picture my mom took on her phone...

Owen is doing alot better. I don't think he's cried for no reason yet today. He's still not 100%, but I think he will be there by the end of the week. He still isn't sleeping at night very well. He get's up every hour... sometimes an hour and a half if we're lucky. We keep him in sleepers so it's easy on his wound.{and us}Owen's next appointment is next Thursday with Dr. Flake and hopefully with Dr. Natarajan.

Our church is having a baby dedication on Sunday and afterwards we are going to my parents for lunch.  I'm glad we are able to make it to the dedication; for a while we weren't sure if we would still be in the hospital or not!

We're finally home! We got home around 4:45pm. Owen was very happy to be in his car seat on the way home. He seems to be a little bit happier but, he still must be in alot of pain because he is miserable. I think he is overly tired too. He slept for about two hours this entire day. We saw our cardiologist today and she asked how our weekend was and why we were still around. She thought something might of happened. She did say she would see us on the same day GI wants to see us even if she isn't seeing patients that day. Which is great for us!
 They were trying to get Anna to drink something so that the doctors wouldn't put a feeding tube in her. I think she did end up taking some chocolate milk from a bottle. The doctors said there is some bleeding in the back of her brain, but that's no cause for alarm. {That's not how Dave took it...} Dave is also out of a job right now. Which is good so he can take care of the other kids while the mom stays with Anna, but not so good for the finances.
 We came home to a roof leak in our bathroom which is pretty normal whenever we go away. I'm hoping with this years tax return we can afford to get a new one put on. I'm not going to go back to work til Wednesday so I can take care of the roof and other odds and ends around here. I'm sure I will be helping Ashley take care of Owen and Owen taking care of Ashley.
Our church has meals lined up for us this week which is great because Owen is a little fuss pot and needs attention while he is healing.

I took these fun pictures of Ashley in the waiting area at CHOP.

We're Home!

Owen learned about his hands during his stay at CHOP. Infact it was almost the only thing that would console him when he was in pain!

Owen got really swollen from the surgery.

Look how fat his hand is!

They let us push Owen around in one of these carts.

Owen got his last IV out today. It was really bothering him. I think that probably hurts more then the wound from the surgery. His little fingers are all missing a layer or two of skin from the tape that keeps his hand strapped to the board. Next time I'm telling them they have to put gauze between the tape and his hand.
He gave me a big smile today and then he refused to sleep or let me put him down. They came in to do their rounds on each patient so I had to leave the room and he screamed for a few minutes and the nurse had to console. She said he finally went to sleep. Meanwhile we found "MadMex." It's actually on Moravian St.  not Walnut like it says on their website. It sits way back in the alley not to easy to find. Once we did find it they wouldn't let Ashley in because her ID was back in the car on 34th. We had to walk back to the car to get it. The food was ok. The salsa tasted like my mother in-laws.{which is a good thing} My chimichanga kind of tasted like motor oil at first but, it went away after the third bite. There is alot of other cool places to eat in that little back alley that look really cool. Very picturesque. Once again wishing I had camera that fit in my pocket and took good pictures.
 The nurse said they are just waiting for GI to say Owen can go home. Which is pretty frustrating because I thought they talked about all that on Friday. Hopefully tomorrow will be the day we can get out of here. I'm sure Dr. Natarajan will make sure we do. We better 24 is on tomorrow!
 Anna head some scary stuff happen today. I saw her mom this morning and she said she was doing great but, while I was talking to Dave in the afternoon they were taking her to get a brain scan because she hasn't been responding and is staring into nothing. They wanted to make sure there wasn't a brain clog. It came back negative but, they had to have someone else review to rule it out. Scary stuff! Keep praying for them!

Owen is getting better bit by bit. He's down to getting his pain medications orally and pretty rarely. You can tell by his face he is pretty sore. He did give us a  real smile right before he fell asleep at 7pm. Ashley is staying at the hospital tonight so she can breast feed him. She got a sleep room right in the CICU so she doesn't have to walk to the other side of the hospital. I'm staying at the RMH. Dr. Flake came by today and said from a GI stand point Owen can go home tomorrow. Cardiac wants to make sure he's gaining weight and won't let him go home tomorrow. I think Owen is ready to get home; he looks home sick.
 Ashley and I went to Peronis Pizza for dinner. We were looking for Mad Mex, but couldn't find it and didn't have the address. So we walked around til we saw something. It was good to get some fresh air! I'm going to write it down tonight so we can go tomorrow.
 Anna isn't waking up last time I talked to Dave, her dad. It's probably from all the pain medication. They said they're looking at one or two weeks in the hospital yet.

Owen got most of his tubes removed. He only has his two IVs left in him. I was able to bottle feed him a tiny bit. He can only eat a little bit at a time for now. We will probably be here til at least Monday it looks like. They're in no rush to get us out of here this time. Maybe tomorrow they'll transfer him down to the CCU.
 My dad's tenants' daughter is doing amazingly well they said. They found out where all the fluid was gathering and put a tube in there and now her oxygen levels are higher then they've ever been. She was even able to drink some apple juice today. They are starting to ask my parents questions about their faith too. It's pretty slow around here. We kind of look at Owen hoping he might open his eyes or wake up for a few minutes. It's pretty boring but you don't want to leave at the same time!

Update.

Owen woke up today for about a half hour, they only gave him a half dose of pain medication before we left at 7:30 his last dose was at noon! Yesterday I think they were giving it to him at least every two hours. If he doesn't have anymore breathing episodes and has a bowel movement he should head over to the step down unit tomorrow! They'll remove his catheter, his art line, his oxygen, and his gastric tube.
 One of our pastors came down to visit us today and restated if there is anything we need to just let them know. It's very comforting to know that we have a church family as well as a regular family so eager to help us.
 The family we met in the RMR told us about a movie that is about the man who perfect the Tetralogy of Fallot surgery. It's called, "Something the Lord Made." It looks really good.
 We decided to sign up for a research study they're doing on Biliary Artresia. They approached us about it last week but, since we were still unsure what the diagnosis was and were a little bit overwhelmed at the time we turned them down. What they'll do is examine left over blood samples and stuff and try to figure out why Biliary Artresia  happens and stuff like that. They'll take our blood samples as well to see if there is a genetic link. Hopefully it'll help other babies in the future.
 Please pray for my dad's tenants' daughter Anna, she had complications last night and they had to do emergency surgery this morning. Her heart started leaking somewhere as I understand it. When we left her her blood pressure was really really low. They're whole family has been plagued with one misfortune after the other and I don't think they're christians; hopefully us and my parents can be good witnesses to them, which could be why we are at the hospital at the same time.
 We went to this really cool restaurant a block away from the Ronald Mcdonald House for dinner. It's called, "Distrito." I noticed it last night when we went by because a couple was having dinner in the window sitting inside a VW bug. Of course then we had to eat there. It was really good. It's mexican family style however, the portions are not very big. It's 9pm so we weren't about to eat a buffet anyway and I think we all left satisified. I wanted to take pictures but, we left the camera at the RMH. I think we need to invest in a Panasonic Lumix just to carry around.

I called to check up on Owen this morning and apparently sometime this morning he decided he was going to hold his breath.  His heart rate dropped so they put the oxygen mask on him.  He is fine now.  It only lasted for a short bit.  They said it is most likely because he is in so much pain and all the pain meds.  They checked his blood gases and everything looks fine there and they also did a chest x-ray and that looks fine as well.  If he continues to have these kind of episodes they will need to do further testing.  Pray that the Lord will take his pain away so they can cut back on some of the drugs they are giving him.  It also doesn't help that he isn't allowed to eat.  He is a boy that loves his mommys milk!  Hopefully sometime today if all goes well I can start nursing him or at least give him a bottle if he will take it.  Yesterday, when we saw him he was sucking away the entire time. 

Ian and I got a good night sleep!  I can't wait to get back to the hospital to see our sweet boy!!

~Ashley

We decided since Dr. Flake has never seen anything like Owen's case before that they need to name it after him. "Owie Atresia" was one suggestion, any others? We left the hospital around 5:30 or so to come to the Ronald Mcdonald House. We figured we could get a good nights rest that way and we think Owen hearing our voices was doing more harm to him then good. It would make him stir if we talked which in turn would give him lots of pain. Owen had a male nurse name Shawn taking care of him today and he was the best male nurse we have had by far. {Meet the Parents comes to mind...} It should be interesting to see what happens tomorrow and to see his recovery. We met a family in the Ronald Mcdonald Room at CHOP that had a daughter that is 3 and a half that was having the same heart surgery Owen will have in the next couple of months. They're really nice hopefully we can catch up with them more tomorrow. Also, one of my dad's tenants' daughter was getting her fourth surgery done today so they were hanging out in the RMR too.

 It's amazing after all Owen has been through he is still not as sick as some of the other kids in there and on the outside would apear to be a normal baby! There are kids that have been there for months and probably years.

                                                     You can see Owen's war bandage in this picture

Owen has three IVs, one catheter, oxygen{which should be removed tonight}, and a gastric line. He is on Morphine for the pain so he is really out of it. We went out to eat tonight other then hospital food! Not that the hospital food is bad but, you need a change of pace sometimes!

Owen is out of his surgery! We are waiting for him to get up to his POD in the CICU in the family room.
The surgeon said everything went fine and that Owens' liver looks healthy with little scarring. He said that it is A-typical for his liver to be like that and he's not sure if that is good or bad and only time will tell.  There was no opening between the liver and the intestine and he went in and and made things go where they're supposed to.
We were unsure were we would be staying tonight. The Ronald Mcdonald house didn't sound very promising in the morning but, they called back an hour later and said they had a room opening.

Diagnosis

Well, we just got an update on our little guy!  They moved forward with the Kasai.  So that makes us believe that it is infact Biliary Atresia.  They said Owen is cooperating.  They are thinking it is going to be another 2 hours until they are done surgery. 

Please, pray for no complications, a speedy recovery & the surgery to be effective and that there will not be a need to do a transplant (we should know within 6 weeks if the surgery was successful)

~Ashley

Owens nurse came in about an hour ago and said they were just getting started.  They put a breathing tube in (that is standard) they also might be putting in a spinal for pain and a couple more IV lines.  Everything is going well so far.  I am hoping for an update soon.... 


~Ashley

They took Owen back to the OR at about 7:30am.  We are still waiting to here if they need to do the Kasai or not.  None of us got much of any sleep last night.  Hopefully tonight will be better! 

Please pray for strength for our little guy!! 

We will keep you updated!

~ Ashley

We are all settled into our room at CHOP.  Owen had his echo done as soon as we got here.  We don't know the results of that.   We should know later this afternoon when his cardiologist Dr. Natarajan comes to see him.  The tech that did Owen's ultrasound was a little annoyed that he was crying.  Poor guy was hungry and just wanted to be left alone.  He will get his IV in sometime later today.  They also want to do a sweat test to see if he has Cystic Fibrosis.  I guess since it is such an easy test they are going to go ahead and do it.   It seems like they are still stumped as to what is going on and want to cover all of their fields.  We are praying when they go to do the cholangiogram tomorrow that everything seems fine and the surgeon won't have to move forward with doing the Kasai Procedure.  Although, yesterday when I spoke with Dr. Natarajan she told us that more times then not they end up doing the Kasai.  The doctor said that she thinks his surgery is scheduled for 7am tommorrow.. 

Please pray that Owen will recover quickly from whatever needs to be done to his little body and that if they have to do the Kasai it will be effective and he will not need a transplant!! 

~Ashley

We met with Dr. Flake this morning. Our surgery/test is scheduled for Wednesday. Tomorrow we will be going to CHOP around 10am. They need to draw more blood and check his blood type incase there is a blood transfusion needed during the surgery. Our cardiologist wants to have an echo done on Owens' heart as well as get him hooked up on an IV so he is well hydrated for the surgery. She wants to make sure his heart can handle a backflow of something  from the liver during the surgery.
What's going to happen on Wednesday? Dr. Flake will check Owen's liver by putting a dye in it to see how everything is flowing. He'll observe this through Xrays and a small inscision he will make on Owen's side. He'll also do another liver biopsy. IF it shows that it is Biliary Artresia and he said he can be sure once he see's the liver then he will continue with the surgery known as the "Kasai Procedure." He said he has never lost a patient doing this surgery but, the success rate is only 60% meaning 40% will still need a liver transplant sometime in their lifetime.  He should be out of the hospital five days after the surgery. We pray none of this is needed of course. If he does all his testing and sees that it is not Biliary Artresia then he will close Owen back up and we go back to GI to see what else it could be. Owen has been super happy the last couple of days hopefully this won't rain on his parade.
 We're not sure were we will be staying either. Owen will probably be in the CICU after the surgery which means Ashley won't be able to stay over night with him. I would imagine he wouldn't be able to eat right away either. I think we are going to look into the Ronald Mcdonald House again.
 We went to Taco Bell for lunch today and I was sitting with Owen and old man sitting next to me said, "I bet your life changed with him!" If he only had a clue!

I just took our stuff down to the car when I got back up GI came in... The senior pathologist was taking a look at Owens' liver sample and he said there are some things that are more consistent with BA then AS and that they'd like to do the next test in that direction. They're going to let us go home for the weekend and we have to come back on Monday to meet with Dr. Flake and will probably be admitted on Monday or Tuesday. It'd be another test where Owen would have to be put under. I'm glad they caught us before we got discharged because, that wouldn't be a fun phone call to get. It's still unclear what Owen has and this test will just help us to get closer to figuring out what it is. Please continue to pray for us and that the doctors will have wisdom in what to do.

We just talked with GI and they said it looks like he doesn't have biliary artresia but, they may need to do another biopsy in a few weeks to make sure it hasn't turned into that. It can develop over time apparently.
 He does have bile congestion in his liver. They want to check for Cystic Fibrosis by doing a sweat test and more bloodwork. GI just came back in the room and said she was going over his records and saw the optometrist report and said we could be leaning more towards the Alagilles Syndrome from his findings. She saw some lines or something in the back of Owens' eye that is common in AS. So far it looks like everything will be treated with vitamins and minerals and close monitoring.

1/15/2010

Owen slept for five and a half hours straight two nights in a row. We're hoping he will begin to sleep longer between feedings! They took out his IV this morning. Owen was very happy to have his right arm back.
 We're now waiting for the preliminary results of his biopsy to determine if we can go home today or not. We are getting pretty anxious to get out of here and can't imagine being stuck here for months like some of the families here, who also have other kids at home. It's grandpops birthday today, hopefully we can go out to dinner to celebrate.

Owen is back!

Owen is back from his liver biopsy. No complications. He was pretty disoriented when we got to him so, he is sleeping the anesestia off right. It appears that we will be going home tomorrow!

Liver Biopsy

Today is Owens liver biopsy.  Please be praying that they will be able to get what they need and that there won't be any complications.  I just spoke with the doctor and she said that as long as he isn't having bleeding he will be discharged tomorrow!!!  YIPPIE!!!!!  Owen did not want to sleep last night!  He was wide awake from like 8:30-11:15 until they gave him benadryl!  That knocked him out!!  The reason they gave him benadryl was because he got a rash all over from the antibiotic he is on for his UTI.  If it isn't one thing it is another!  We will update when Owen is out of his biopsy!

Thanks for all of your prayers!

~Ashley

5:15 Update

We got the results from Owens kidney test.  Everything seems to be fine, he is not having any reflux into his kidneys which is wonderful!!  Owen developed a rash earlier this afternoon that we are now monitoring.  He is taking a nice long nap.  Poor guy it seems like everytime he finally falls asleep someone comes in and wants to bug him!  We told the nurse that at night we only want them checking his vitals and all when he is awake feeding.  Otherwise Owen and I are both up all night.  He has been having a hard time falling asleep at night.  Every time when I go to lay him in bed he wakes up right away and starts crying or they come in and want to check something.  Poor peanut!  I can't wait to get him home in his element!!!  He has been fever free all day!!! 

Thank you everyone for all of your prayers!  Ian and I are at peace with all that is going on and continue to trust God!!! 

~ Ashley

1/12 3:30pm

Owen's fever finally broke this morning. He seems to be doing better. He had a test to check to see if his urine was refluxing into his kidneys. We should get those results tomorrow. They moved his biopsy back to Thursday. The nurse said if he is stable and fine 24 hours after the test we might get discharged! They're going to start him on Ursodiol tonight to try to flush out the bilirubin.
 They were supposed to come last night at 8 to draw more blood. No one ever came. The doctor finally decided to do it herself and she couldn't get anything out and she poked him three times. The guy came in to do it at 6am and he got it the first time. I'd imagine when that's all you do all day you're pretty good at it.

Back in the CICU...

Owen still has a fever hovering around 100.  He was up to 101.5 last night when we first got here. We didn't get transferred from the ER to CICU til 3am. They put us in our own room this time with a couch, sleep chair, and a shared bathroom. I'm not sure if I will be staying here or not. They typically only allow one parent to stay overnight.  A friend of mine has an apartment near Temple and said I could stay with him while we are down here.
  They started him on antibiotics for his UTI and are planning on doing the liver biopsy on Wednesday; assuming his fever breaks. They said there is a small chance that the UTI is causing the liver issues.  The reason they checked his eyes last week was for Alagille Syndrome Which he checks out on alot of the facial features and heart problems. I guess they'll be able to diagnose that officially after the liver biopsy.
For the next few days it'll be more urine samples, blood samples, and they're going to test his bladder and kidneys just to make sure his urine isn't backing up. I can't imagine it is, he pees too much!
 We had to do our first rectal tempature check. That was a less then thrilling experience for both of us.

CHOP called...

Owen has an Urinary Tract Infection which explains the fever he's been having today. It has nothing to do with his hydascan they tell us and that he needs to get his kidneys checked out again. Kidney problems run in the family. My dad only has one and I have kidney stones.  I get to run out and get some antibiotics for him.
So much for an early night!......
Owens fever just spiked so now we are heading down to CHOP at 10pm. Poor little guy! Please pray for him!!!!

Brianna and Josh's Wedding.

Here are a few photos I snapped while at the wedding...







They took all of their photos outside in 20 degree weather. The wedding photographer didn't seem too
concerned with peoples health and comfort; which I thought was one of the first rules of photography...
  Owen had alot of fun at the wedding. He was happy the whole time well, til' he needed food.

 Owen spending time with Mommy at CHOP


Owen with all his wires and IV in having fun on a bouncy seat.


Carly getting ready for Owens' fourth Catheter, while Grandmom looks on.

We're going home for the weekend...

We are waiting for the optometrist to come up and check his eyes out before we get discharged. We have to come back on Monday to meet with cardiac anesthesia to figure out what anesthesia they need to use for his liver biopsy later on in the week. The hydascan showed that his liver bile ducts are blocked going into the intestine. They don't know why they're clogged or if it's not even an issue for him. The liver biopsy will rule out Biliary Atresia. Hopefully we will get out of here soon in time for the wedding rehearsal so, Ashley will know how to walk down the aisle properly. Oo yay! Optometrist is here. Carly {his nurse} just came in and after three failed attempts, they want to try to do another Catheter. The last one he pee'd right after they cleaned everything up and I went to grab the cup to catch it but, they took it away already. Keep praying for us and Owen and for perfect peace.

We are waiting now for the Dr to come in and give us the results of his hydascan. If that test is negative he should be able to come home today and do the rest of the testing outpatient. We still have to do some kidney and eye tests today.

Update?

There is nothing really new to report. The ultrasound didn't reveal anything abnormal. We went down to the radiology department for more testing and we were told not to feed him for four hours before. You can imagine how he liked that... When we got there the tech said that not feeding him wasn't necessary.  It's an hour long test and he screamed for about... all of it.  We are going back down there at four to get more testing done. They put some sort of radioactive liquid in through his IV and see how and where everything is going. The tech said it sounds bad but, using dye has side effects and this radioactive liquid doesn't.
 Dr Natarajan has been checking in with us a couple of times a day and explaining everything to us. Which is great because the nurses can be not so helpful when it comes to what's going on sometimes. She's also genuinely concerned with him. If you ever need a cardiologist she comes highly recommended.
  Sometime today he is going to get a Catheter because, the urine sample they got earlier was contaminated.
   They did say his bilirubin levels have gone down but, not out of the margin of error. Now they want him to see an optometrist tomorrow.
On a CHOP side note:  The cafeteria looks like it's all done with construction. Now you can access the Carvel stand from the exit which was it's downfall when they were working on it. Who would want to get ice cream when they get their meal? Now you can get it after you eat.  The chinese is good there but, today I just got turkey and cheese on multi-grain bread and that could be my new favorite. Oh and they don't take Discover which is a pretty big bummer for us because that's all we use.
Time to go get more testing...

In ICU...

Owen went to the Pediatrician this morning for an Emergency visit. He hasn't been feeling good and we've been noticing in his eyes that they were getting more yellow. They had some blood work done and found something wrong with his liver and set us down to CHOP with instructions not to eat. This was at 12:30pm. Around 6:30pm he got an ultrasound and was able to eat after that. He also got an X ray. We are waiting to hear from the GI as to what is going on with his liver. We don't know anything else. Dr. Natarajan {our cardiologist} is going to try to get Owen fixed up and out for Ashleys' sisters' wedding this Saturday.
Tomorrow they will do more testing and possibly a liver biopsy. Please keep us in our prayers. Ashley will be staying at the hospital overnight with Owen tonight. I'm not sure what we will be doing the remainder of his hospital stay. I guess we will find out more tomorrow.