Hurray! Extuabtion

Well, Andrew is chugging right along. They were able to extubate him earlier this afternoon & so far he's doing well with that. Thank you, Jesus! Poor Daddy went to work today (we thought he would be intubated until at least tomorrow) so he has to wait for his turn to hold his boy. I thoroughly enjoyed having Andrew back in my arms again. Thank you all so much for your tireless prayers & support. This kid is amazing!

Tuesday

Andrew is doing pretty well today. They are changing all kinds of things to get him started on recovery. It's a scary situation because we really can't know whats going to happen, over the next days or months or years, but I guess the Lord will teach us to live for each day. Today we are excited to see things moving along. Probably the hardest thing about last week was to go from day to day with no change, no plan for him to get better, just keeping him stable until his cath yesterday. We are hoping the Lord will make a way in Andrew's body, that he could be healed. Hoping for a miracle. Thank you all so much for supporting us throughout the past months. Andrew is such a beautiful gift!

Cath complete

The doctor just came in & said the cath was done. Everything went well. They got the stint in & a broviac line in his right leg. We are hoping Andrew can get on his feet now & that the stint can hold up. Thank you for your prayers! Keep 'em coming.

Heart Cath

Just wanted to let you know that Andrew is having his heart cath right now. The plan is to stint the left lower pulmonary vein & also to get a new central venus line to get rid of the one right now (it's in a risky place). I am hoping that they won't have to turn the paralytic back on at all. We'll let you know how things go.

Sunday Night

Well, the paralytic wore off & Andrew has stayed calm so right now it looks like he will be able to keep it off. Right before we went to dinner (Thanks Matt & Lori!!!) he woke up & looked at us, which was awesome after a week of being completely sedated (except for the couple times he woke up to make a statement). Right now he is resting peacefully with little wiggles here & there &, to daddy's extreme pleasure, holding Steve's finger. Sure makes you appreciate each little thing. Can't imagine that we could love this kid any more!

Sunday

Well a few things changed today. They turned off his paralytic a little while ago, so hopefully he will stay calm & be able to keep it off. He is still sedated. So far we can see him triggering breaths on the ventilator, but not really moving around yet. We keep praying for our miracle, but as you can imagine this is a very difficult thing to go through. God is faithful & I am continually amazed at the way he provides strength for Steve & me. Thank you all so much for your prayers for us as well as for Andrew. I pray that the Lord will draw each of you closer to Him through this.

Saturday

Not much new to tell. Just trying to be patient & keep faith & hope up. Thank you all so much for standing with us through this. It is more helpful than you could know. Thank you Jesus for Andrew. Such a precious gift.

Friday

Not much new today. Right now the plan is to keep Andrew as he is over the weekend, then on Monday he will go back to the cath lab where they will try to stint his lower pulmonary vein as well as place a new central line. Please keep praying for Andrew's health overall, but if you need to get specific he needs to pee more to loose the extra fluid he's carrying; his lungs need to clear up some more; his lower left pulmonary vein to open up as much as possible (& the upper one to reopen, if we're asking for things, why not?); pray against bleeds & infections... I'm sure I am missing things. Basically we are praying for a miracle. Thank you all for standing with us through this & everything over the past 4 months.

Thursday Morning

Andrew has made some progress since yesterday. He is still on the ventilator & has to be kept under sedation, but his lungs are looking better & he looks like he is adjusting to his new blood flow. He still has a ways to go before he is back to breaking hearts, but we are so grateful for the progress he's made. Thank you all so much for your prayers, I know God hears them.

Prayer for Healing

So, Steve is going to be at a prayer service this evening to pray for Andrew's healing. I believe it starts around 7 pm. If you can please spend some time in prayer around that time, even find somebody in your house or wherever to pray together in agreement.

Again I say to you, that if two of you agree on earth about anything that they may ask, it shall be done for them by My Father who is in heaven. For where two or three have gathered in my name, I am there in their mist. MATT 18:19-20

Surely this is a mystery to me, but we believe more than ever in the power of Christ. Glory to God! Thank you!

good news

There is no clot! THANK YOU, JESUS! So his blood flow is still open. This is great news, but Andrew is still very sick. Now that they have ruled out the cardiac occlusion it seems the problem is pulmonary. All the cultures have come back negative so it is perhaps viral. This will just take time to heal since there is nothing they can give to kill a virus.

Wednesday

Andrew is about the same. Still requiring a lot of support. It looks like there is a clot at his stint, so they are going to do a quick angiogram this afternoon to see exactly what size it is, etc. If it is causing an obstruction, they will put a medicine in his line to break it up. The risk is that this drug goes to the entire body so there is the possibility of bleeds elsewhere. Andrew is a very sick kid at this point. We need as much prayer as we can get. Thanks for sticking with us.

Tuesday

Well, Andrew was off to a running start yesterday, but last night he had to slow way down. They are checking everything to see if anything is hindering his recovery, but it is also possible that he just needs more time. He went through a lot this weekend before the cath, so he may just need to take the recovery extra slow. This is what we hope. Thank you for your continued prayers & keep them coming. We sill have great hope for the life of our son.

good night

Just wanted to let you all know Andrew is doing well with his recovery today. Thank you, Jesus! and thank you all so much for all you love and prayers! We'll let you know how he does step by step each day.

Cathiter Update

The doctor just came to speak with us; Andrew's cath is done. The problem was definitely in his blood flow & much of that was able to be corrected. They will be watching his lower left pulmonary vein as it is narrow right now, but there's a good chance it will dilate with increased blood flow (which will happen because of the other repairs made today). If it does dilate to a degree, but it looks like it is going to progressively narrow they will likely stint it. The upper left pulmonary vein is completely closed off. The good news is that the right pulmonary veins look good, so it is likely that even if both pulmonary veins are closed off (if the lower doesn't remain open on it's own or with a stint), Andrew would be able to survive with his right lung providing all the oxygenated blood. That's a mouth full & I'm sure it doesn't make much sense. The most important point is that Andrew still has a chance at life. Definitely won't be able to fight in the UFC, but I don't think there is any argument that he is the ultimate fighter.

going good

Andrew is doing well in the cardiac cath. The doctor has done some corrections with a stint & a coil and he is talking now with the surgeon & other cardiologists to discuss possibly placing another stint. Please keep praying.

Cath

Well they took Andrew back to the cath lab about 20 minutes ago. It'll be at least a couple hours. We'll update you as we hear any news. Thank you for you prayers!

Sunday evening

Okay. The doctor just came in & the plan as of right now is to let Andrew continue to rest (as long as he is stable) & go for the cardiac cath tomorrow morning. Whether they can completely address the issue in the cath lab will depend on the nature of the narrowing & exactly where it is. Basically, his repair (the Glen) is in the shape of a T, so if the narrowing is just on the l part they can stint it, but if it includes the vertical & horizontal parts of the T they would have to go in surgically, because there's no such thing as a T-shaped stint. The doctor felt according to this morning's echocardiogram that there was a good chance that it could be addressed in the cath, but we won't know for sure until they get in there tomorrow morning. This seemed to all come on suddenly (we were even tentatively scheduled to go home Tuesday), but really Andrew was just compensating for the situation as long as his little body could.
Thank you all so much for your prayers. Obviously, we were very disappointed that our son has to go through so much, but please know that we aren't discouraged. It's very hard & it hurts, but Andrew is our precious gift from God & we continue to praise Him for him & continue to look to Him for strength as well as healing for Andrew.

Sunday Afternoon

Bess and I are up here, just getting the latest on Dizzy. They had to completely paralyse him because he was fighting the vent, they also put him on some Nitric Oxide as well. His chest is still draining (though it has slowed, and his swelling, mostly in his head, has come down. The big news is that he is going to go for another heart catheter within the next 24 hours. They are now suspecting some sort of a obstruction in his Glenn (the area where they rerouted the blue blood to drain from his head & neck from the surgery they just did) as being the culprit. We were told that this would be the best case scenario for Andrew, just because it really seems to explain all the issues that came up yesterday, and there is also a good chance for a fix. The good thing is we have one of the leading Cath Dr.'s in the world performing this, the nurse said he is the absolute best in situations like this. Because of the possibility of Andrew having an infection (so far cultures are negative), and some other issues, this seems like it will be a bit more risky than a usual Cath. But the consensus is that right now, if it is an obstruction (possibly a clot, but looks more like scar tissue at the suture site) the risk of waiting are far greater than going in now. So keep him in your prayers, we will find out in the next few hours when the Cath will be. We are just praying that if they do find an obstruction, that it is something they can address with the Cath, and not have to open him up. We will update you all later. Thank you!

Busy Night

Andrew has been going through the wringer tonight. They ended up having to put a sub-clavicle line in, they had tried for 4 hours to get another IV in, but to no avail. He has been poked and prodded all over his poor little body. They are going to settle him down and try and let him rest for the rest of tonight (morning). There are some pretty severe risk with this line he had put in, just because it is going directly into the artery that his GLEN is in, but that is the only place they could get a line in, and it was nearing a matter of life and death for getting some line in. So, here we are, poor Bess is way too tired to be up here, I got to at least sleep in a little this morning. Thank you all for the emails, texts, phone-calls, visit, and comments throughout today, it has been a rough one, we're hoping we are past the worst of it. So, just pray for NO clotting in his new line, for his left lung to re-flate (i don't know what it's really called, but 'un-collapse'), the infection to go away in his right lung, his heart to beat stronger, and his breathing improvement. We will update as we progress... good night.

Saturday Night

they just had to put in a chest tube to drain out some fluid they found around his lung. What they drained was pure milk, it's a long story, but it is understood well by the Dr and that allowed him to modify Dizzy's management through this time. They also found what appears to be pneumonia or some type of viral infection in his right lung, so they have those anti-biotic running. It looks like now is just a bit of wait-and-see.... he seems to be pretty stable now considering...

Sat evening

andrew is hanging in there. his left lung has opened back up at least partially. they are going to wait until the morning probably to take another xray since it doesn't really change the plan of care at this point (to what degree it's open). thank you all so much for your prayers. please keep them coming. they are going to extubate him as soon as they can because being on the vent actually interferes with the blood flow to his lungs. don't ask me to explain, i only understand the elementary version of his cardiovascular system myself. we'll keep you updated.

Update

Well, they just intibated Andrew (@12:50), they didn't feel it was profitable to wait until 2pm. So he is sedated now and has some more stuff hooked up. They plan on trying to open his lung back up artificially, for the next 24 hours, then see if that will stimulate it to take over for itself. It's just a little bit harder than normal folks for Dizzy because of his heart stuff, so we'll see. I'll update when we get any more news.

Saturday Morning

Quick update....
Dizzy's entire left lung collapsed this morning. They are doing treatments and stuff in the hopes of opening it back up. They are giving him until 2pm today, then they wil have to intubate him and try some tricks from there. We don't know yet what caused it. there are several possibilities, but none conclusive as of now. So, just pray for the little man, pray for Bess, she had to hear the news over the phone while at work (she's trying to get back here now) but she was pretty upset. We will update later as we know more. Thanks for all the thoughts and prayers you can spare

Sweet boy

So I tried to upload this earlier, but it didn't work & I was hungry so here goes the 2nd try. Andrew is doing very well. The anesthesiologist thinks the trouble he had this morning was due to withdraws since he missed his pain medicine at 9am, but the feeding tube is in now and we're excited to move forward from here. He didn't have to have an artery line put in after all. Whoo-hoo! This video was taken when we were first in to see him after the procedure this morning. About ten minutes later he was asleep. He does that a lot, like he's waiting for us before he can go to sleep. I guess he just wanted to let us know he was okay. What a sweet boy!

All done

The procedure is done. Of course it didn't go as smoothly as we would have hoped, but I guess that's Andrew. His oxygen saturation level was low so he will probably have an artery line again for a while so they can monitor that more closely. He is okay though & the feeding tube is in place, so thank you, Jesus. We'll post again later today to let you know how he's doing.

New feeding tube

Sorry for the scarce updates the past few days. The computer has been earning it's keep this week so it hasn't been as available for personal stuff. Andrew is back having his new feeding tube put in right now. They took him back about a 1/2 hour ago & it should only take about an hour total. I will post again when he's all done. Thanks as always for the amazing support & all the prayers! We just can't express our gratitude.

Tuesday evening

Hi all,
Dizzy's doing pretty well today... just kind of hanging out with pops. He is getting better little by little every day. Thursday is still on for his permanent G-J Tube. We can't wait to get it out of the way so we can talk about GOING HOME! We'll see, I know they will send us home as soon as they can without risking anything with Andrew. Not much else is new. Maybe tonight, if Dizzy is up to it, we'll try to get up some pics and\or videos... See ya

Sunday

Okay, so it's not a great video, but what can I say, sometimes the boy just sleeps & we stand around & stare at him. It was good to have his Aunt Gina & cousin Mikala Joy (I mention her middle name because it's mine too : ) come by to see him. We can't wait to go home so we can see our good friends & family more regularly.

Must stay awake!

Andrew is still progressing great, he isn't feeling as hot though. He has been a little grumpy since yesterday afternoon, but that is to be expected. He got rid of his artery line & some more meds today. We are hoping his oxygen can go away tomorrow as his saturation has been trending higher now that his body is adjusting to his new blood flow. I want to thank everybody who helped out with the poker run today & those who participated. It was a little overwhelming for me. The generosity will help pay Andrew's medical bills, but it is also very touching. I guess that's it for now. Hope you enjoy the video.

Holding Andrew again

Sorry we didn't get this up last night. Andrew did get his feeding tube in & they were able to start feeding him again, but alas it worked it's way back out early this morning. Theory is he kicked it out or perhaps got it between his toes & pulled it out. Knowing my son, both are very real possibilities. The doctor said he contacted the g-i doctor who is going to come see Andrew on Monday. I am hoping sometime (sooner than later) they will be able to put the permanent set up in. What he's got now is a temporary set up which is obviously flawed given my wiggly boy. Plus, it's one step closer to getting home. I can hardly believe it! No time frame has been given, but it was wonderful to have the doctor bring it up this morning. We'll let you all know as soon as we get an idea of how soon. Anyhow, enjoy the video.

Hello everybody

Happy Friday! Andrew is chugging along. Everyday better than the last. I am really proud of him; he's done a little fussing but much less I'm sure than I would do in his place. Right now they are trying to get his feeding tube back in so he can get some food. His belly is giving them a run for their money though. The last one actually managed to get tied in a knot. We are hoping the 3rd time is a charm. He did enjoy some visitors in between tries. Jerry & JoAnn came by before lunch with their kids. Then Mommy enjoyed having lunch with Cindi, Theresa & Emily. I think everybody agrees that Andrew is a cutie-pie. Sorry Cindi; I think you got the short end of the stick with the view of the 2nd attempt at the feeding tube placement. Actually, I think he was most annoyed at the light being on. He really meant to be sleeping at that point. He is asleep now, much to both of our relief. Thank you all for continuing to love & support us. Your prayers have gotten us a long way. Steve & I look forward to seeing many of you tomorrow at the Poker Run (motorcycle benefit Andrew's Uncle Mike got going for him). Barring any excitement here with Andrew, we'll both be there at the final destination. I'll try to get Steve to put some new video / pictures up later this evening.

Video 1

Thursday Afternoon

Well, Dizzy is doing goo, he is making progress and looking better and better every hour. Not a lot has changed, but I did take some video of him this morning, so I'll just post that up. Thanks

Video, w/Dad translating for Dizzy

Pic2

Pics

Wed Night

Just had a short update and a couple of pictures to put up: Dizzy is doing pretty good. He tends toward high bloodpressure, but that is no surprise to the docs. He has been sleeping all day, they have to sedate him still a little just to keep him from getting all riled up. He has responded well to having the tube taken out, now it's just really a waiting game. His body needs to take the time to adjust to the operation. We still have no idea when we can go home... but at least it is probable now and it's being talked about, I almost can't believe it. We will get to go home soon and see what it's like to be parents in real life. STRANGE!*!*!*! There are so many little details that we never even cared to think about, just due to the enormity of the major issues. All I know is that I have been loving my wife and my son more and more through all this stuff. There has been so much change that has been challenging me and Bess to become stronger people, and also talking to a lot of others who have supported us. It's like these big issues cause us, if we will see it, to address issues in our lives that we have been avoiding or flat out ignoring, and we have the option of dealing with it or just complaining and finding comfort in self-pity... a lot of other things too. But, anyway, Bess and I have been talking a lot about a lot of things and are just finding that there are always opportunities to grow as individuals and as a family. Thank you all so much for your support and prayers.... wait!........ just snagged some video of Dizzy when he woke up and was working his Passi over... i'll post it and the pics right directly

Bye-bye breathing tube

Andrew just got the breathing tube out about 20 minutes ago & looks pretty good so far. Hurray!!!

2 days post op

Hi everybody. Andrew is still being a good boy. His cultures from yesterday did come back positive for infection, but the good news is that it looks like the antibiotic they started yesterday has been effective & his 'numbers' look better overall. They are going to go ahead & try to extubate him today, so they turned most of the sedation off about 20 minutes ago. We're praying he can ditch it today & move on, but if he has trouble they will just put it back in and give him a couple more days. We'll let you know how it goes.

1 day post op

Sorry I'm just getting around to updating. Andrew is doing very well. We didn't have any big excitement all night or today. Right now the focus is weening him off the ventilator, hopefully he will be ready tomorrow morning. The doctors expect he will do better when he is able to get rid of it. We thought earlier that he wasn't peeing, but Kalee must have been doing her thing because he was just tricking us by peeing around the catheter & had a big wet diaper. I think he's on to the system & is trying to get rid of the catheter. He had an echocariogram early this afternoon & the doctor said things looked good. They are also checking him for infection because they suctioned some yellow stuff out of his lungs earlier, so keep that in the prayers. As always, they started him on an antibiotic right away which they will discontinue if it turns out there isn't an infection. I can't really think of anything else right now. Steve & I are extremely grateful for all your prayers and support!

Back in the CVICU

The doctors just came by & Andrew is doing pretty well. No funny stuff. So we are hoping he'll keep it up through the next few days & get on the way to a full recovery. Thank you so much for going through this with us today. We are hoping to get in to see him in the next hour or so. We'll keep you up with the recovery progress throughout the week. Keep the prayers coming! Kalee it's time for those pee prayers again.

DONE

The surgery is over. Andrew is off the bypass now & they are even going to close his chest today. He isn't back to the CVICU (cardiovascular icu) yet, but maybe around 1:30. His heart rate & oxygen saturation is good right now. The surgeon & anesthesiologist will come out to talk to us when they hand him over to the CVICU. Keep those prayers coming full blast these next few days for a smooth recovery. Thanks for the prayers and support through the surgery!

12:15 update

The NP just came by & said they are done with the procedure & are getting ready to take him off the heart-lung bypass. It should be pretty soon so I'll update again shortly.

Pictures

This picture is from yesterday when Christy, Nimish & the kids came by to see Andrew. Nimish isn't in the picture because he's to my right snapping pictures with their camera. Andrew pretty much slept through the entire visit. His Machie & Papa also came by to see him, which he also slept through, but I didn't think to get the camera out. That's okay, I'm sure he'll spend plenty of time hanging out with them in the future. Steve's mom, Grammy T, is also down here in FL right now, coincidentally in time for the surgery.

1045 update

Well, the nurse practitioner came by a few minutes ago & said things are moving right along. The surgeon finished working on his pulmonary veins & they should be moving on to the Glen (2nd phase). It seems to be going quicker than we expected. The NP said he would possibly be out of surgery around 1 pm (we were expecting 2-3pm). Please pray that all finishes up well & that Andrew doesn't have a lot of bleeding. And no funny stuff!

9:30 update

Andrew is doing well so far. He's been on the heart-lung bypass for about 25 minutes & they are bringing his temperature down (to protect his organs as best as possible) so they should be in the thick of it. Steve & I are doing okay. Of course it's really scary, but Andrew belongs to the Lord & we're going to trust in Him. Thank you all so much for everything.

8:30 Update

The Nurse Practitioner came in and said that they have officially started the operation.... that's really all for now, but she said she would give us another update in an hour or so...

Surgery begins

They just took Andrew back to the O. R. about 10 minutes ago. Please pray as you can throughout the day. THANK YOU!

Sunday Night

Well, it's Sunday, we're up here in the room with Dizzy, just kind of hanging out and holding him as much as we can before the surgery tomorrow. Please pray for us throughout the day tomorrow, the operation is going to take literally 7 or 8 hours. He is in a good mood today, with a little gas and reflux stuff, but also has been playful and getting some naps in. It's going to be hard to see him look like he has taken a step back, but it's a necessary step in the right direction. We are just praying for a smooth surgery and a speedy recovery. It's still too early to talk about any specific time for going home, but this surgery is really the reason why he's still here, so if recovery goes well, (the docs said some have gone home after 10 days) we may be looking at coming home soon. (take a breath... one step at a time....). We'll be waiting most of the day tomorrow, so we will load up some pics and vids and updates as we get them tomorrow. thanks to all for the support

Cute boy

Andrew is having a very mellow day. It's rainy here, so maybe that's setting the mood, but Andrew has been peacefully sleeping all afternoon. He did have a visit from his cousin, Joshua & Aunt Becki. Josh & Andrew share the same birthday & actually Josh was born here at Arnold Palmer. It was good to see those boys together at last. We look forward to the day when seeing his friends & family is a regular occurrence. Here are some cute photos for you to enjoy.

Training Video

This is from tonight up here in the room...

Surgery scheduled

Andrew's next heart surgery is scheduled for Monday. They will come get him around 7:30am and it will probably take until about 2-3pm. They will complete the second phase surgery that is usually completed around 4-6 months old & in addition they will be widening the sections of his pulmonary veins that have narrowed. Our hope is that this will take care of his pulmonary veins for good - that they don't narrow again. It's a big surgery, but we are hoping Andrew will have a much more stable circulation after his recovery. The mortality rate for this surgery is about 3-5%, so much better odds than his first heart surgery, but then again we know Who is really in control. Please keep the prayers coming! And we will keep you updated more frequently as the surgery and recovery progress. Thank you all for everything!

A Poem for Dizzy

This us a poem that was written for Dizzy
and sent to us today... it was a blessing to us
Andrew, Andrew, baby from God
many questions surround your little bod
is your heart right? is your heart strong?
how long will your fight be before you move on?
so many things we do not know
but we hope and we pray that soon it will show
so many thoughts run through our minds
how can this be?,... what was his crime?
sometimes it's not for us to understand
but just to believe in the One God who can
comfort your mommy and daddy no matter
Andrew my child your body looks battered
the poking, proding, cutting, and sewing
a lifetimes worth of pain you're showing
but, so far away, I don't get to see
the day to day happiness that you still bring
The wandering eyes, the chubby cheeks
the smiles and giggles when your parents speak
Andrew, I love you that's all I can say
and when you get home, I'll be on my way
To see you grow up to be who you will
I know God's got something in store for you still
a man of God I know you'll be
I believe it with everything inside of me
so, for right now keep up the fight
to show those doctors that God's making you right

Cath is done

Well Andrew made it through the cardiac cath very well. I think he will even be able to be extubated by the time I get back to see him. We received wonderful news! For a little background ... I apologize that I was purposely vague with you all this morning. We were aware this morning that it was possible, depending on what they found in the cath, that there wouldn't be anything more they could do for Andrew. I guess that was just something I wasn't willing to put out there unless it was certain. Well, at this point it is still a very complex situation but one they are comfortable going ahead with surgical intervention with. His next heart surgery may be as early as Monday & will be a difficult case & a difficult recovery, but praise God, there is still hope. I need to be completely honest with all of you, Steve & I are not amazing people, we are not this strong. No one possesses the strength within themselves to go through things like this. The Lord provides each day, just like manna. I promise, there is no other way. This morning my heart was torn, it doesn't get easier to face these things, but about 12:30 I was given peace. I'm sure I'm not explaining it right, but that's the best I can do. I certainly felt scarred & nervous after that, but I had a peace in my heart. Thank you for those of you who hold us up in prayer - it has gotten us through so much. Please keep it up! We hold to the hope that we will bring our boy home to live.

Thursday Morning

Just wanted to let you know that Andrew will be going for his cardiac cath around 2-3pm. He's having a good morning. He got to sleep in Mommy's arms for a while (his favorite) and then Daddy came up & we all went outside for some fresh air. Right now he & Daddy are playing. Also newsworthy, apparently he was rolling around his crib last night. The head of the bed is always elevated because of his reflux, so they build a cocoon around him with blankets to keep him from sliding down & falling to the side. Well it looks like he's now able to roll over the bumps as he was found down closer to the foot of the bed. Of course this poses a practical problem, especially when he has i.v.s going, but I can't help but to be proud of him. We will let you know the results of the cath when we can. Please keep us in your prayers. This is a pretty big deal with what they can do from here & how to approach.

Wednesday

Sorry you didn't get an update yesterday. I blame steve entirely : ) Andrew's procedure went well yesterday so he has a little bigger tube in his belly & a smaller tube running through that into his intestines. This isn't the permenant set up (he still has to go up one more tube size for that) but it did allow him to get rid of the feeding tube through his nose. So far he seems to be doing better with less reflux.
He is going tomorrow morning for another cardiac cath. He will be the 2nd case of the day, so I would guess he'll go back about 9am or so. They are particularily interested in his pulmonary veins. We are hoping they won't have to work on them anymore (they did some reconstruction during his 1st heart surgery) but if they do need to it should be at the same time as his next planned heart surgery.
Right now we are praying for a great report from the cardiac cath tomorrow. We are thankful for our precious son & we live in hope & faith that God will bring him through all this. Thanks for keeping us in your hearts & prayers!