Memorial Service

I know in the last post we wrote a tentative time for Owens memorial service.  It is exactly what we thought it would be.  It is tommorrow morning June, 1st.  There will be a greeting period from 9:30-10:30am and the service will begin at 10:30am at Branch Creek Community Church on 100 Main St. Harleysville, PA 19438 .  I know so many have said how awkward it is and many feel like they don't have anything to say to us.  It is just as awkward for us.  It is okay to not say anything and just come out and show your support.  God has given Ian and I amazing peace.  We feel all of the prayers you are lifting up on our behalf.  As we have said many times we are so thankful that the Lord healed our sweet baby Owen.

Service

Owen's service will be held Tuesday, June 1st at branch Creek Community Church. Viewing will be at 9:30 and the service will start at 10:30. Maybe later then that. We haven't worked out all the details yet but, I figured I'd post what we know as of now to help people plan ahead.We should have all the details tomorrow night. Thank you all for your prayers and words of encouragement. There is no way we would make it through this without the thousands of people praying for us. It may be the worse thing for us but, it's the best thing for him. We were just babysitting him for God anyway.

I had a gut feeling when I left the last night and Owen finally smiled at me a few times that I just knew things were drawing to a close. We both just knew it. We never thought a day would as difficult as the one to follow. Ashley had to hold Owen all night because he was just so uncomfortable from the swelling. Then he threw up and after that they wouldn't let him eat. He didn't eat all day. They kept trying to get an IV line in and couldn't do it. They poked him everywhere. It was terrible. He was so dehydrated. I couldn't believe it. We kept telling them there is something wrong with him he can't go this long without eating. This is exactly what happened on Friday night. All day he was just out of it. He wasn't crying when they poked him or being himself.  They finally put a PIC line in him and everyone thought he was out of the woods but, they still wouldn't let him eat. and I was holding him and I put him down because his lead was all weird and he just started blinking weird and then Ashley yelled to me to get out of the way and it was just a blur from then on... They did cpr on him for about 30 minutes with no luck to bring his heart rate back up. As soon as we walked in to see him we said just stop and let him be. He is healed this is God healing him. We love you buddy!Our cardiologist said he was screaming and fighting them before they sedated him to give him CPR. She said he is a fighter til the end.
  Before Owen passed he was reaching up in the air with both hands and I just knew he saw something we couldn't see. He saw God's hand coming down to scoop him up into his loving arms to where he will experience no more pain and suffering. And Owen knows too much about pain and suffering.  He was suffering the whole day, Ashley and I both prayed without knowing it that, the Lord would just take him. I wanted to whisper in Owens' ear so much that it was ok to give up and that I'd still love him regardless but, I just couldn't get myself to do it. I know he knew it.  When I was speeding towards the hospital Saturday morning I saw an ad for a funeral home on the back of the bus. I thought, "That's stupid who advertises a funeral home on the back of a bus" and  "Please God don't let me need that tonight. Not like this!" He gracefully gave us a few more good days with our love before he went home.

 We love you Owen and we miss you!

Branch Creek Community Church
         100 Main Street

     Harleysville, PA 19438
         (215) 256-0100

S

Owen went to be with Jesus. He is finally healed

S

He's dead

Ah!

Owen's heart when down again. We know exactly why and are pissed!  Just pray for him and us. Will update later when we know more. He was awake

OR

Owen is in the OR right now. He is getting a pic line put in. He hasn't eaten since 9 and he threw up before that. Nor did he really sleep.. I'm pretty sure he is delirious right now. They kept trying to stick him and no one can do it. Which we told them every time they tried. We wanted the pic line from the beginning. They think they know every thing. They said they had to have one in to do the pic then after they couldn't stick him then they said, well we could just numb his arm. Hopefully he is okay. With the pic line they'll be able to draw blood and use it as an iv. Its been a crazy stressful day

So Complicated!!

Oh my is all I can say!!!  It has been quite the day!  Last night Owen's last IV went bad so they had to take it out.  They said he would be okay without it since he is on all oral meds.  Well, then this morning the new doctor had a fit that he didn't have an IV in and said that he needed one.  IV team came in and tried 3 times unsuccessfully.  Then a doctor from the PICU came down to try and put a PIC line in.  UNSUCCESSFULLY.  Then, another doctor was able to get an IV in his foot on the first try.  UGH soooooo annoying!!!  Dr. Natarajan was notified and came to his room all upset?  Thinking something was terribly wrong.  After, all the drama she said she felt like it was best that he be transferred to the PICU, AGAIN.  So, Owen has been in 5 rooms since he was here in the Emergency Dept. last Friday.  With all that said they want him NPO today incase they need to take him to the Operating Room to put the PIC line in.  They, might also stick a needle in his tummy to relieve some of his fluid.  Poor little guy!!  He has had such a rough time here.  He must feel like a pin cushion.  His whole body is practically black and blue.  There aren't very many more places they can stick him.  It is so hard watching or even knowing what your baby has to go through.  Did I ever say the nurses are far from gentle???  Owen just wants Daddy and Mommy and cries as soon as a doctor or nurse even looks at him.  He is beyond exhausted.  He hasn't been sleeping well at all.  I think he got about 5 hours total of sleep last night if that.  They are going to give the lasix another try and if that doesn't work then they will drain the fluid in his tummy.  Hopefully once the lasix kick in or they drain the fluid he will stop vomitting. 

We will let you all know what is going on when we know.  Things are constantly changing.  The doctors are constantly chasing their tails.  They treat him for one thing to have a problem with something else. 

Oh and did I say they want to put a catheter in to see if that will relieve more fluid??  OH BROTHER!!! 

Poor Buddy is all I can say!!!!!!!

Here for the Long Term

It looks like we are going to be here until after Owen get's his new liver. They haven't reactivated him on the list yet. They want to wait and see that he doesn't have anymore episodes. They don't want him to do that when they're in the OR. Our cardiologist is going to continue to talk to the surgeons to debate them on the details of why they want wait. She is convinced it's not going to happen and has strong cases against some of their reasons. But like she said, "These doctors have been doing this for 20 years and know more about transplants then I do and I need to be respectful of that."
They took his ART line out. The nurse bandaged it up and walked out of the room while Ashley went to feed Owen. It bled everywhere. All over Owens face, body, Ashleys' arm and shirt. I ran out grabbed the nurse ran back in an applied as much pressure to it as I could. He then came in and wrapped so tight that Owen was screaming for about 20 minutes until he came back in and loosened. It must of clotted in that time because it seems to be doing well.
 We are being transferred down to the CCU. Which is a good place for us. We know most of the nurses down there and I think we are more comfortable on that floor. He'll be on GI's service though. I guess that means we will have a GI nurse and they will round on him. The cardiology floor has monitors that record the activity while the GI floor doesn't. I think that is the main reason why we will be there.
 Last night Owen was beyond tired and would just not go to bed. There is just too much going on on this floor for him to not be looking out the window at all the people going by. He finally did fall asleep. I forget exactly how we got him to. Ashley said at 3 am they gave him some pain killers and he slept a good long time after that. He is just so swollen and black and blue from the other night that he is just uncomfortable. I'm sure the IV and the ART line weren't feeling to well either.
 He hasn't really gone to the bathroom since Saturday or Sunday and everytime we give him oral medicines he throws them up. I think we are going to have to space them out instead of him getting 5 in one shot.

Has anyone heard of that playground shooting around Temple? We just met one of the moms. Her daughter was shot in the head. She had a very bad experience with  other hospitals before coming here.

The plan for the day is to get a last draw of labs to test for some metabolic liver diseases.  He was already tested for most of them a couple months ago before he had his Kasai (liver surgery to help open the bile ducts).  They think it's abnormal for what he is diagnosed with for his liver to progress so quickly so, our GI wants to check a couple of others, but you have to remember Owen has been atypical from the beginning.  After, they get those labs they'll take his ART line out and we will be able to really hold him. Then hopefully they'll decide what floor they want us on {GI or Cardiac} since they feel Owen doesn't need intensive care.  He is still very swollen and his belly is HUGE.  They are going to give him some lasixs to help him get rid of some of the fluid.  Although, they have given him a couple of doses already and it makes his potassium levels and other levels come down so then they have to give him more fluid.  It is a vicious cycle.  He took 5 bottles really well and then I nursed him once and now he won't  have anything to do with a bottle!  Little Stinker...  I guess I can't blame him it is the only time they want me holding him due to his ART line.  They always get concerned that it could get pulled out and he could bleed to death.  His poor groin is so black and blue and bleeding.  When he went into cardiac arrest they were trying and trying and trying to get central access so that they could give him mega doses of meds very quickly.  They were never successful at doing so.  I am always surprised when they can't get the art lines in and central lines in.  They do it so easy or with only one stick when they are doing heart catherizations.  Although, with his ART line they had to do a cut down in order to get it in his artery.  I won't get into how they do it.  I am sure most of you would rather not know.  I don't think there is a doctor or nurse that doesn't come in here and say he is sooo cute!!  Obviously we think he is the cutest thing too!  He is starting to act more and more like himself.  He smiled at Ian once last night, but hasn't smiled since.  He tends to not smile much when he is in the hospital.  Can you blame him? 

Pray that Owen can get all of this fluid that is making him so uncomfortable out of his body.  It is also making it so much harder for him to breathe. 

We are up in the PICU. It's weird being on a different floor then what we are used. All the nurses are different, they're all private rooms, and their family room is lousy compared to the 6th floor.
Not to mention they were having anxiety attacks when they turned his monitor on and saw where his heart rate and oxygen levels are. Ashley breastfed Owen for the first time. They stopped all the antibiotics and steriods that they were using to fight an infection just incase he had one. He tested positive for Rhino virus. They don't think it's related.
Some friends stopped by on their way to OC and brought us some steaz soda! It's the best!
They're giving him some laseks to flush his system from all the fluid they pumped him full of. Since he looks like the michelin man. Tomorrow morning they're going to start giving him his at home medicines to see how he does and to get him back into the routine. I'm not sure if that means discharge is on it's way or not?

PICU

There is talk that they may move Owen to the PICU.  It appears his heart is still functioning the same as before he went into cardiac arrest and that his heart was not the cause.   They fell like they will be able to better find a cause of what had happened and they will be able to better treat him in the PICU.  Most of his cultures that they sent out to check for infection came back negative.  So, hopefully they take him off of contact isolation.  Although, with him being on that he would most likely have his own room, because they obviously wouldn't want to spread germs.

He woke up for us and Ian was able to give him a bottle.  He is very swollen.  Poor guy!  He can hardly open his eyes.  He is starting to act more and more like himself. 

Owen had a really good night.  He woke up and fed around 10:30 from a bottle and fell right back to sleep til about 3:40; woke up and was reaching for his toys that we have laying next to him. I think the next time he woke up was in the 6 o clock hour. Each time he polished off each bottle. Yes, Owen actually drank from bottles! They did take him off of his nasal oxygen just to see how he would do and his levels went to where they usually are, they put it back on after a while. I think last time they said that they wanted him on oxygen whenever he is here just because it can't hurt.
Ashley and I stayed at the Ronald Mcdonald House again. We decided she should get one more night of sleep while she still can. My mom has graciously stayed with Owen both nights to give Ashley peace of mind.
One thing I don't think we mentioned before was that Owen was very acidotic when we came and they are thinking that the acidosis caused his heart failure. Which goes along with his liver failing. They're still trying to rule everything else out just to be safe. We haven't heard anything about discharge or transfer to the CCU which, is fine by us for now.
Hopefully he'll wake up soon and he'll get to see his parents.

.alagilles syndrome

One of Owens IVs failed. So they came and took it out. They ran out of spots to put another one, I think they are just going to leave it out. One down three to go. Our nurse convinced the doctor to let us feed Owen next time he is stirring. We are going to try a bottle first to see if Ashley can get one more night of sleep while she can. If not the nurse is going to stand next to Ash and hold the art line. Our nurses this weekend have been outstanding.

Dr Natarajan came in and told us that if Owen didn't throw up right before his arrest he probably wouldn't of made it because you can't stick the things down his throat. That's just another testament to God's hand in Owens' life. Everything that happens is "Well if that wouldn't of happened he wouldn't of made it."

They still don't know why he arrested or what he has. They've mentioned a stomach bug but, have no evidence. We told Dr. Natarajan that he is just telling us his heart can handle a liver transplant.

I added a text message update link on the side. If you enter your cell we will send out a text when something important happens. That way we can get the word out as quickly as possible.

Thanks once again for everything.

liver disease

They just took Owen off the ventilator. He is pretty cranky. He hasn't gone to the bathroom since before his incident. Hopefully he can start feeding tonight or tomorrow. He is looking alot better. Infectious Diseases came over and went over Owens history with us. He doesn't think it's menigitis like some doctors were thinking. They still have his room under contact isolation though. They did an echo of his heart earlier and said that everything looks good for Owen.

Morphine

Ashley wanted me to clarify on the morphine. They give him morphine not because he is in so much pain he needs something so strong. It's because his liver can't handle other pain medications.

Owen had a good night. He was awake for a little bit at 1am and they keep weaning him off the ventilator. He had some green stuff coming up out of his  stomach tube so they are treating him for an infection.

We slept great here at the ronald mcdonald house on our sleep comfort bed. Of course Ashley hadn't slept since 8am friday morning and I only got and hour Saturday morning. You could say we were pretty exhausted!

We are just about to go over and be with our little man. Thanks again for all of your prayers.

6

I guess post #4 got deleted.

What a day!!!!  Owen was fine, just a little irritable for the past week, but we just assumed it was because he just got teeth.  He was here at CHOP yesterday for routine blood work and a couple of transplant appointments.  Right when we got home we got a phone call from GI telling us to come back in for repeat labs due to his electrolytes being funky.  We were hoping it would be a quick thing and we would be back home in no time..  Little did we know how bad Owen really was!!!  All the doctors and nurses in the Emergency Department were totally frazzled and then once we can upstairs to the CICU the doctors up here were totally frazzled.  At that point they had the repeat lab results and things were getting worse.  They wanted labs every 4 hours to make sure things weren't progressing too quickly.  Well, Owen continued to get worse and worse as the night went on.  Ian left to go home at about 3:30am.  We figured Owen was stable.  Just about as soon as Ian left Owen started getting really unconsolable.  I told the nurses that something was not right.  Owen was in a LOT of pain!!!  He is normally easily consolable.  Poor baby!!  He seemed like he was constipated he would arch his back and throw a fit.  We tried a glycerin suppository and that didn't help at all so then we finally gave him tylen*l.  After, he finally settled down after not getting a good nap during the day and no sleep at night due to constant tests and blood work.  It wasn't more then 5 minutes that he was sleeping and I had just laid down to go to sleep and all the doctors and nurses come swarming.  I had NO clue what so ever was going on.  All I could see is that his heart rate was dropping.  I left the room....  I couldn't be there watching all of the doctors frantic yelling orders to the nurses and have no idea what was going on.  I just told one of the nurses outside the door that I would be down the hall and please keep me updated.  I called all of our immediate family and told them to get down here.  Everyone got here fairly quickly.  Although, as I was trembling alone it felt like forever.  They called on the loud speaker "All attending physicians to room 6 bed 6."  Owens room.....  I was sick....  Then I heard them call the social worker to 6 south.  Owens floor....  I knew something was seriously wrong...  I called Ian and said "Owen died I am so afraid Owen died" it was the most horrible feeling ever....  Then the doctor wanted me to come back to Owens room to talk to me because he was very unstable and she just told me that he went into cardiac arrest and that they had to bring him back once and that if it happens again she doesn't know if she will be able to save him...  The Lord certainly gave me peace!!!  I managed to hold myself together.  Praise God Owen just keeps getting better and better.  He holds true to the meaning of his name "Young Fighter."  Little did we know when we picked his name... 

Owen is gradually getting better!  His labs keep coming back better and better and he is starting to look more like himself.  They just gave him a dose of morphine to keep him calm.  They are doing a head and a belly ultrasound.  Head ultrasound to check to make sure he didn't have any bleeding in the brain that caused anything and then to make sure that he didn't have any bleeding due to the chest compressions.  They are checking his tummy to make sure there isn't any blockage.  They seem to think that Owen may have just got a stomach bug?  Hopefully, that is it!! 

I am running on no sleep in the past 30 hours or more.  Ian and I are going to the Ronald McDonald House to sleep tonight.  We are praying for an uneventful night and that Owen will get better quickly.  I hate to leave my baby.  It is very hard for me, but since he isn't nursing I feel like I should get some sleep so I can better care for him when he is able to nurse.  They are hoping to pull the breathing tube out tomorrow and perhaps I will be able to nurse him?  I guess it depends on who is the doctor. 

We will keep you up to date as we know more of what is going on.  Please, continue to pray that Owen will remain stable. 

Thanks for all of your prayers and support. 

~Ashley

5

He is awake!!!

3

They are putting a real art line in right now. The kind where they cut your wrist so they can actually see the artery. Which i think they should of done first.  Luckily for us our cardiologist is on the floor the whole weekend.

Owen

Sleeping

2

Owen is on a ventilator. His temp is really low so they put a heat blanket on.  He is paralyzed and sedated but they are going to unsedate him to see how he does. They did an echo of his heart and said it's doing ok. Gi just was here and said its a good sign that his belly is soft.   We just have to sit and wait.

Pray

Owen had an attack of some sort this morning his stomach swelled up and his heart stopped. They had to revive him. He is sedated and stable right now but they are unsure what is going on. They are trying to get an art line in his legs to give him stronger meds. They haven't been able to get one in on past tries.

They are also waiting to hear what the surgeons think. Please please pray for owen and us

Back in

We went to chop this morning for lab work and a few other things. As soon as we got home we got a call to come back in. His sodium levels were really low. We are in the er waiting to get our room. They believe this is a sign of his liver failure starting to progress. With all that being said he gained almost a whole pound in a little more then a week. They are quite confused. Can't wait to get out of the er to the doctors that we know and know more about owen. Please pray for the little guy.

Naptime

IF only we could get him to sleep in his crib at night

Dr. Natarajan (Owens Cardiologist) called this evening and told us that Owens liver doctors, liver transplant doctors, cardiac anesthesia and heart surgeon all sat down to talk about Owen.  She said they have a plan in place for Owen and that Owen will go on the PICU (Pediatric Intensive Care Unit) floor after his liver transplant instead of the CICU (Cardiac Intensive Care Unit).  They feel like that is best due to the fact that they know more about the liver transplant aspect and they know some from the cardiac aspects.  The cardiologists will still check up on Owen often.  She also said she wants to get echocardiograms more often to be sure that from a cardiac standpoint nothing changes.  They apparently are going to do a echo when they call him in for a transplant before moving forward with the transplant.  Again, to be sure nothing changed and that he wouldn't be at any added risks. 

GI called and we have appointments on Friday at CHOP.  We have to meet with Social Work & Psychology, plus Owen needs to get bloodwork done and possibly his vitamin K shot unless CHOP homecare comes out Thursday morning. 

Teeth

Owen got his first two teeth, bottom center!!  You still can't really see them, but you can feel them!!  They sure are sharp.  Now he can start biting the doctors and nurses when they hurt him...  haha!!  JK!  He has been really happy up until today.  Any suggestions to help ease his pain without using medications?  Any natural remedies? 

We are still waiting to hear from CHOP about Owens next appointment.  We should be going sometime this week I would imagine. 

Yesterday, as we were driving somewhere we got a call from CHOP.  I guess now everytime I see CHOP's number on my caller ID I am going to be thinking that there is a liver for Owen.  They just wanted to make sure they have the right numbers incase there becomes a liver available that is perfect for Owen.  They also told us that Owens score for a liver is only 35 not 42 like they originally thought it was.  They said because of his weight his number went down.  Although, the weight they have is not very accurate due to the fact that he had leads on and oxygen tubes...  Oh well, next time they see him in clinic they can get a more accurate weight so they can update his status.  Owen will also need to get blood work done weekly to stay active on the transplant list.  I guess Owen won't get a liver as quickly as they originally thought due to the fact that his number is lower then they thought it would be.  Apparently, with adults their number can only go up to 40 so with Owen he would have originally been bumped up infront of any adult waiting for a liver and they thought that he could get a 1B status.  Status 1 would be children that only have days to live and 1B would be I guess children that are stable, but still in desperate need for a liver.  The doctor told me yesterday that they can write a letter stating that Owen really isn't doing well and that he needs a liver quickly if he would get to that point and doesn't yet have a liver.  Owen's blood type is O which is good because it isn't a rare blood type, but then again there are alot of people waiting with a O blood type.  Owen is in God's hands and only the Lord knows when that perfect liver will be available for our little man.  In these days and weeks ahead pray for the dear family that will loose a loved one, but will give Owen a new liver, a second chance.

We are blessed to have so many wonderful friends and family members that are so ready to serve us and help us out with anything and everything.  We love you!!

Home

We're home!!  It feels so great! 

We were able to meet with the liver transplant surgeons today at HUP after Owen was discharged from CHOP.  Apparently, over the past couple of days since Owen was admitted at CHOP the hepatologists and cardiologists were going back and forth if it was even worth it to do a liver transplant on Owen.  We weren't aware that they were thinking that his prognosis wasn't good enough to even enlist him for a liver transplant.  When doctors look over Owens medical records and see where his INR, bilirubin, ALT and AST numbers are they think that Owen is really not doing well.  Little do they know how much of a normal baby he is.  Doing exactly what he should be for his age.  Dr. Natarajan and Dr. Loomes wanted the doctors, surgeons that weren't for doing a transplant on Owen to see him.  See how sweet of a little boy he is. Dr. Loomes told Owen to smile at the transplant surgeon.  Steal his heart.  Well, Owen talked the entire time the surgeon was talking to Ian and I.  Now, everyone is on the same page and Owen is offically listed on the transplant list as far as we know.  Dr. Loomes said you can get a call anyday for a liver although, they are going to be super picky with the liver they are going to take for Owen.  We need to have our phones on at all times because when they call and tell us there is a liver for Owen we need to get to CHOP in a couple of hours. We are aware that both a liver transplant and open heart surgery is higher risk for Owen due to the multiple conditions Owen has.  Liver transplants are 90% successful and his heart is fixed with a good long term outlook although with the two things together become very complicated.  The doctors feel Owen could do pretty well being there are no complications with either of his surgeries.  This morning Dr. Natarajan (Owens Cardiologist) came in to see Owen and was happy.  Happy that they were able to convince the transplant doctors that Owen's heart is stable enough to withstand a liver transplant without any heart repairs.  The plan at this point is to get Owen a new liver and after he has a new liver and his INR (clotting numbers) come back to where they should be a little while after the transplant they will then do a full repair.  They told us the normal hospital stay period for a liver transplant is 3-4 weeks, but with Owen we could easily be there longer.  Owen will need to come home on like 8 different medications.  They said that 2 of them are to help his liver and the other 6 are to treat side effects.  He will be on immune suppressant drugs.  To help his body accept the new liver.  I am sure there are many things I am forgetting.  We will update as we think of things we are forgetting or as we have updates. 

Thank you for all of the prayers, e-mails, notes, cookies and flowers.  It means alot to Ian and I knowing so many care and are praying for our little guy!! 

Going Home.

We met with the transplant team this morning. We talked about everything that will be happening over the next few weeks or months. They told us Owen will most likely be on the top of the transplant list because of his levels being so high. They also didn't think he needed a feeding tube and actually said he had some good chunk on him.  Owen doesn't have to go home on oxygen, they decided they can get his stats up with oxygen when  they'll need to so, he doesn't need it at home. We have to go over to HUP when we get out of here to meet the transplant surgeon {if he is available} That way he can look at Owen. Our cardiologist came in and said, "I hope my email to him didn't scare him into meeting with you." She is the best! Owen can tell he is about to go home because he is very happy and talking. Which he wasn't so much the last few days. 
Thanks for praying and please continue to do so. This is just the beginning of a very long road.

Nothing new really tonight. We were supposed to meet with Dr. Rand who is the medical director of the liver transplant program but, she had a family emergency and will be meeting us first thing in the morning. A friend of a friend of a friend had a contact up at the toronto hospital that reviewed what we have said about Owen. They said we are better off here then there and what CHOP is doing is what they would do. Which is nice to hear from someone that isn't directly through CHOP. Owen still has to be reviewed by nutrition, who was here and said she was going to review him but, we haven't seen her since. She'll probably come in late afternoon tomorrow and want all kinds of stuff done so that'll keep us here another day. There is talks about putting a feeding tube in to fatten him up for the transplant. She'll be the one who determines that or not.

1

The dad next to us was just transferred over to HUP. I think they said he was having a heart attack. Young guy too.

5-11-10

Owen will be going home on oxygen. Hoping that it will help his liver the same way the shunt would have. When he is on oxygen his stats go up to high 80s even saw some 90s. Without it he is in the 70s. We are supposed to be meeting the transplant team today and other people related to that sort of thing. We might get to go home today if everything gets taken care of. Our cardiologist came in and made sure we are aware of the risks again.

Deep Breath

I'll try to explain this all the best I can but, forgive me if it's more of a rant and out of order.
Owen is a very complicated case. Infact they've never seen a case like Owen before. They've been looking through literature for a case to compare Owens' to and they can't find anything. The closest they've come to is a patient that had a different heart condition and a liver transplant. But of course Owen's heart condition is way different.
The surgeon expressed concerned about excessive bleeding and the risk of clotting in the shunt when Owen would have a liver transplant. Which he before he came in the nurse practicioner came in and said he was on the liver transplant list. {which was news to us! we didn't even know he didn't one} He basically said he didn't feel comfortable doing the surgery because he doesn't know enough and it seems to risky. He wants to wait it out since Owen is stable and do a liver transplant first. So this had us going around circles not sure what the heck is going on. So we told the nurse we want to get a second opinion and asked for papers to release his medical records. Then the Dr. on the floor came in and told us that our cardiologist and GI doctors were coming in around 5 to talk to us.
They talked about a few different scenarios. One: do the temporary shunt which is what we originally came in for and hope it helps his liver grow. The downside to this is if he is on bypass for too long it could kill his liver.
Or we wait until a liver becomes available and do a transplant and the shunt on the same day. This seems to be the best scenario even though the risks are incredible.
Three: Is do nothing and enjoy him while we have him...
They said that the surgeon hadn't talk to the liver transplant team yet and that's why he doesn't feel comfortable doing it. We asked if we could get the top surgeon to take over.  They said the best place for both cardiology and GI would be in Toronto. They are emailing some contacts there to ask their opinions.  There are a few doctors there already that know of Owen's case.
They both said the best way to get things done is to stay here, that way everyone is not procrastinating on his case because he isn't in the hospital. The transplant team is supposed to come meet with us tomorrow and they're supposed to meet with the cardiac surgeons and figure out what they think is the best thing for Owen.
They put Owen on oxygen just to see if it'll help his stats go up. I wish they had an oxygen chamber.
We'll see what happens over the next couple of days. Please pray for us and the doctors for continual wisdom and peace in what to do.

alagilles syndrome with tetralogy of fallot

Our surgeon just came in and talked to us. He said he took us off the schedule for tomorrow. Apparently Owen's liver is failing pretty rapidly. More rapidly then they have been telling us. He is not sure if the heart should be addressed first or not. He also said something about going on the liver transplant list. This is all a huge shock and we are thinking about getting a second opinion we just don't know where or how much time we have. Not too mention what insurance will cover.  I guess the surgeon is going to talk around and review owens file more and see what his labs are like today before any decisions are made.

5-10-10

We are here getting settled in here at CHOP. They are going to draw a bunch of labs. That seems to be all that will be going on today. I did get a room at the ronald mcdonald house, that is a huge blessing. Owen is sharing a room with a tiny little baby, hopefully one that sleeps through the night for Ashleys sake.

liver disease

GI called on Friday night and said Owen's vitamin D levels went up from a 3 to a 9. He was at 13 at one point in his life but, they want it still higher then that. His liver functions went down 400 to in the 200s. Which is progress! They want it lower then that but, it's a start! Hopefully things keeps going the direction they need to go.
We also got a letter in the mail from CHOP explaining that the Phyllis Recca Foundation payed off our remaining balance from when Ashley was in the hospital delivering Owen! That was a huge blessing and just another reminder that God takes care of his children.
Last week we changed cellphone providers. We thought we were going to have to dish out a couple of hundred bucks for phones and  activation fees until we talked to my dad's cellphone salesman. He hooked us up with all free phones, no activation fees, and 100$ for each line we transferred over. The company store wasn't anywhere even remotely close to that! Not too mention we are getting all the bells and whistles for the same price we were paying for just phone service. Sometimes God finds creative ways to show his goodness!