Thursday, April 29, 2010

Surgery Schedule

Owen will be having the first of his heart surgeries on Tuesday, May 11th.
The plan is to go in on the 10th and get him all vitamined up. We also have an appointment on the 3rd for his pre-admission testing. We're glad we are glad he is getting it done. First we're hoping it helps his liver and his growth. Secondly, the older he gets the more he wants to move around and the less content he is being held.
The Doctors are still confused about Owen. His levels that show liver damage stay the same but, he still isn't absorbing his vitamins like he should be.

Random Photos from Owens first 6 months

Friday, April 23, 2010

We had an appointment with GI today. It wasn't the best of appointments. It was the first time they acted like Owen's liver isn't doing so well. I guess because his vitamin levels are so low. Which they don't have bloodwork since we got discharged last month so, hopefully the bloodwork they got today will show some improvement? The past couple of days he's been looking less yellow to us and that may be a good sign. In preparing for the worst {liver transplant} our cardiologist came in and talked to us. She said they don't think Owen is ready for a full repair of his heart but, to get his oxygen levels better they want to put a shunt in on his Aorta to his lung to help grow his pulmonary arteries. GI said that maybe the extra oxygen will help his liver function better. It's a shot in the dark but, so is Owen. Since Owen's vitamin D levels are so low{as of last month} they're worried about fracture with his ribcage when they go in to do the surgery. We will be scheduling his surgery next week and it should be within the next two months. Our cardiologist said she talked to the leading cardiologist at SIC in Toronto for a second opinion and he thinks it's the right plan for Owen. 
Phlebotomy was a nightmare. Right before they got the last vile of blood, the needle fell out. So they stuck Owen again and couldn't get anything, then again, and then again. Ashley was quite upset and expressed it and told them that's enough! This is on top of the vitamin K shot we gave him a half hour earlier.
 I'm going back to work on Monday which is perfect timing because I don't have anything to do next week.

Saturday, April 17, 2010

Owen had his first day in the big city this past week. My cousin is moving his business to a new location in Manhattan. They were having a hard time getting an electrician so they called me to do a few things. Home Depot in Manhattan is quite the different! The lumber section was about 15 feet long.You can check out some of his amazing cakes at Mark Joseph Cakes Anyways I dropped Ashley and Owen off at a friends house in Brooklyn where they spent the day. Owen did really good on his first long car ride. He woke up right before a rest stop which was perfect so he could nurse. He slept the whole way home!                                             
                                                Here is Owen at his first NY dining experience

We got a call from CHOP yesterday and they said we didn't have to give him his vitamin K shot today! We're not sure why {they left a message} I think the last blood test he got might have shown his levels normal because it was right after he was given blood from his Cath.

Should we get this toy for Owen or should we hold out for a gas powered one?

Wednesday, April 7, 2010

We're awaiting our discharge papers and we are outta heeere. We might even be able to make it out with no traffic! They have a bad habit of releasing us at rush hour.
Owen is doing great! He is still sore around his legs but, he's smiling, happy, and trying to get his hands on anything he can reach. He slept better then ever last night. We'd like to think that it'll stay that way but, it's wishful thinking! GI wants some bloodwork drawn before we leave to check his vitamins again. Then we should be getting out of here. His one catheter spot was oozing a little bit of blood but, it looks like it stopped now.  Hopefully we can get out in the sunshine soon!

Tuesday, April 6, 2010

Owen woke up and nursed and is back to sleep.  I have a feeling another sleepless night is in order...  The plan is to discharge Owen tomorrow.  They want to observe him overnight due to his tendency to bleed. 

Owen is back from his cath. Everything went well. They didn't need to do any interventions. The Dr. said he has two large collaterials and one fairly small one. GI and Cardiology are going to get together now and talk about what they saw and what should be the next move. They had to give him blood which we knew about ahead of time. The doctor said he is anemic and has really thin blood... We are waiting for him to wake up to feed him. He can't move his legs for 6 hours so the longer he sleeps the better. There is a slight possibility he'll be discharged tonight but, we know how that goes; we won't hold our breath.

Owen, Ash, and panda outside the hospital
Owen likes to suck on the hotpacks that they put on his arms before they put his IV in. {He also learned how to rip his leads off}
Owen sleeping off his procedure!
Just got our 1 o clock update. They're inside and taking pictures. No interventions yet. They're still just poking around.
We met with the surgeon beforehand. He is really really tall and he's got farmers hands. I'm not sure how the heck he works on little babies. Is it me or our surgeons some of the most boring people to talk to in the world? I guess their career is pretty sobering.
Last night we walked from the hotel to the hospital. They wanted us here ASAP!!! When we got to CHOP our room wasn't ready for us. They said it wouldn't be ready for an hour. Just then our friends called and said they were almost here so, we decided to go back out practically walk back to the hotel and eat at the Marathon Grille. When we finally did get into our room there was another baby in it who is sick. I'm not sure if he had RSV or what but, they had to wear masks and gowns. The nurse said he was supposed to be out of the room by the time we got there. They had three hours to get his room all ready! That was fun. Then they didn't have any of Owen's medications ready to give him and he never did get them. That means he has missed 2 doses so far. Ashley said the nurse came in and woke him up everytime to do his vitals and then woke him up at 4:45 to nurse so that he'd be NPO by 5:30. The past times they always woke him at the time he is supposed to be NPO because they know that nothing goes on time here. They really need to work on that. There is no reason why babies and kids should be NPO longer then they're supposed to be. Especially 4 hours longer.
Well, Owen wasn't allowed to eat after 5:30am and they didn't take him back for his catherization until 11:30am.  Poor little guy!  He was very upset just about the entire time.  His night nurse kept waking he and I up..  It was VERY annoying.  Neither of us got much sleep.  Owen's vitamin K levels (aka his clotting levels) went up to 2.05 from 1.9..  In the opposite direction then what we wanted.  They still went ahead with his cath, but they are giving him fresh frozen plasma with clotting factors in it.  I am very thankful for all of those who donate blood for those who need it..  Like Owen!  The nurse will come around hourly to give us updates on our little man.  I will let you know more when we know more!  Please continue to pray for Owen there are alot of risks that go along with a heart catherization.  He will need to lay flat and not move his legs for 6 hours after his catherization.  To keep the risk of bleeding and clotting down. 

Monday, April 5, 2010

In the City...

Owen had his pre-cath visit this afternoon. He had to get bloodwork drawn and a chest Xray.
They didn't check for vitamin K in his labs so, Ashley said something and the Dr. kind of just shrugged it off but, then she went and looked at Owen's file and realized she was right.{duh} So he had to get restuck  to get his vitamin levels which made him not too happy. She just called and said his levels are at 1.9 and they like them at 1.5 so, he's going to have to get a shot tomorrow morning before he goes in for the cath.  If the surgeon goes in and sees that he needs any balooning or stents done to his veins he'll do it. Which means his procedure could be 2 hours or 6 hours. We have to be there at 9am and Owen can't eat after 7am.
We saw Dr. Loomes while we were walking back to phlebotomy for the second time, she said she would check up on his levels.
 Owen King of the King bed.

   The Ronald Mcdonald House was booked up so, we got a hotel for the night at the Sheraton. They have a discounted rate for Ronald Mcdonald families. We asked for a refridge and it was a 25$ charge. There is a 42" LG TV and a desktop PC for free but, 25$ for a mini fridge? Highway robbery. We decided we can just ice his medications!
This just in while I was typing...
CHOP called and want Owen admitted tonight to get his Vitamin levels under control. Looks like I'll be ruffing it at the Sheraton alone...

Thursday, April 1, 2010

Owen vitamin levels are way down. His body isn't absorbing them like it should be. He is supposed to get a shot of vitamin K on Friday but, we are still waiting to hear back on where to get it done. Our pediatrician won't do it because, we'd have to pick it up from CVS and she couldn't be sure it's sterile. Which is stupid, if we have to administer it and it's not sterile, we're going to end up at her anyway! If we don't get it done before Monday I doubt he will get his cath done. He would have too much bleeding without enough vitamin K.They also want him on 6MLs a day of vitamin E. We're still waiting to hear about getting shots of his other vitamins so he doesn't have to take them orally.
We've been watching a DVD CHOP made about AGS. It's five hours long with loads and loads of information. We're almost done disc 1.