Mason is so close to getting his chest tubes out, and the word "home" was even mentioned the other day, but after a very active day yesterday his draining actually picked back up. So we continue to sit and wait patiently. All the while Mason is turning into a wild man in his crib - especially after last night. He may actually pull the tubes out himself!

Mamma left this morning to go back to Kansas but Granny is flying in today to take her place and help out with Mia. Fortunately for her today is our day off at the Ronald McDonald House. So no chores for Granny today! : ) We hope everything is going well back home. Mason is watching Handy Manny in his crib as we type and talking up a storm. Hopefully the baby next to us is able to sleep through this!

Getting better

Mason continues to get better. At this point he is definitely back to being himself. Which includes melting down any time a doctor or nurse comes around. Needless to say his blood pressure is high anytime they try to take it so mom and dad have stepped in to help out. We are earning honorary nursing degrees as we go through this.

He loves getting out for walks and stroller rides. I think the hospital loves seeing him walk around too because he is so animated. The kid loves exit signs and will point each one out and say "exit sign". He also enjoys the automatic sliding glass doors next to the elevators. He gets so excited when they open up. He does what we like to call the happy feet dance. The walking also helps with his chest tube drainage, which continues to slow down. We are getting close to getting those tubes out. Fingers crossed!

Mason is continuing to get better and as you can see he is up and walking around. He would probably take off running if we let him. We are taking him out for a walk and/or stroller ride a couple times a day. Or as we call it "exit sign world tours" as the kid loves exit signs. His rash is getting better too but its still there and bothering him. All in all he is doing really well. It's great to be able to get him out and about. It helps with both his and our spirits. Now we just need his chest tubes to quit draining before we can go home. It's a waiting game at this point.
Thanks for the continued prayers and support. We feel the love in Ann Arbor.

Out of the ICU!

Mason is out of the ICU! He got his orders to move to the general floor this afternoon. His left lung continues to get stronger and as of this evening his nose is canula free. Hopefully it stays that way. The plan from here forward is to get him stronger and ultimately for the fluid draining from his chest tubes to come to a complete stop. We can't go home until that happens. Unfortunately each kid is different and the draining could last anywhere from days to weeks. They won't pull his chest tubes until he has stopped draining for 24 hours. We don't know if this means anything or not but he isn't draining as much as you would typically see at this point.

One other thing we haven't really discussed is that he has had a bad allergic reaction to something topical. Whether it be the tape they are using for his bandages or the ointments they are using, whatever it is his chest looks horrible. Tonight they put a burn shirt on him to keep him from itching it. Poor kid can't catch a break. He is talking more today and even though papa won't read this he keeps saying he is "papa's boy".

Busy Sunday

Another good night and another good xray this morning. All of this will be followed by what will be a very busy day. They plan to take him off all of his sedation meds today, start feeding him in his stomach (he took care of this himself as you can see above), start him back up on his blood pressure medication, start him back up on his Viagra, and ween him off of the hi flow machine as much as he allows. He is much more alert today and has said a few words. The first being "cheese" after mommy asked him if he was hungry. He is watching tv right as we post this. Let's hope the rest of the day goes as smoothly.

Saturday Update

So far today has been a better day over yesterday. Mason is much more comfortable and is waking up more. Unfortunately his left lung is down even more over yesterday but as long as he holds where he is at he won't need to be reintubated. The plan for today is rest, lots of chest poundings to loosen up junk in his lungs, bringing him down on pain/sedition meds, and removing some of the lines he does not need anymore. It may be baby steps but at least he is moving in the right direction.

Up and down day

Mason is still off the vent but he is needing more assistance than we would like when it comes to breathing. This afternoon they had to put him on a hi-flow machine to get his oxygen levels up. He continues to be on hi-flow as of this evening and will most likely be on it well into tomorrow. He is resting comfortably which is good because mom and dad are not. Hopefully he has another good night an even better tomorrow. We will keep you updated.

Good night and he is off the vent

Overall Mason had a good and more important uneventful night. So far we have been blessed to have great nurses in the ICU. They took him off the vent this morning and he is having some of the challenges we have seen in the past with his left lung not opening up as much as we would like. They are watching that closely and doing everything they can to keep him from going back on some type of breathing device. Hopefully his lung will get stronger the more he starts to come around. They didn't have much of a choice this morning in taking him off the vent, he was going to pull the tube out himself otherwise!

Post-op Blues

We finally made it back to see Mason. Even though this is the 3rd time we have seen him like this it never gets easier seeing him in this state. Overall he is doing okay, or so they try to convince us. His blood pressure is a little low and his pulse a little high right now. Hopefully those will normalize overnight. They are completely taking him off his Viagra and that has dad the most nervous. He was on such a large dose that we hope going cold turkey doesn't cause any issues but they are the experts. He will also be on the vent overnight. Fortunately Mason has no idea what is going on. Here's to a good night and an even better tomorrow.

We already miss Kansas.

Out of surgery!

Mason is out of surgery and his surgeon said everything looks great. His pressures are in check. It will be another hour before we get to see him.

Update #1

4 hours in and they haven't started surgery yet. His chest is open but the surgeon ordered another echo before he begins to get another reading on the narrowing in his aorta that the cath picked up yesterday. Correcting that was supposed to only add 15 minutes to the surgery but apparently it will add a couple hours. : ( As long as they get it right that is all that counts. Keep the prayers coming.

In Surgery

Mason is in surgery. It should take another 3-4 hours at this point. Unless something is worth noting we will update again when he is out. He was in a great mood when we handed him over. Of course they gave him some happy juice to take the edge off! Keep the prayers going.

Surgery is first thing Thursday morning

Mason's surgery is considered first case Thursday morning. We have to be at the hospital at 7:30, with his surgery beginning around 8:30. The surgery is expected to take 4-5 hours. So please keep Mason in your thoughts and prayers tomorrow morning! Making it past what is considered to be the final planned surgery of this entire process is a huge achievement for HLHS babies. So please keep Mason in your prayers.

Aside from the standard surgery they will be correcting a narrowing in his aorta that they discovered in this morning's cath. He also has an additional vein in or around the heart that they are going to check out as it has gotten bigger in the last 2 years. They don't know how it will react to this next surgery and they may have to obstruct it or something like that.

Mason was admitted to the hospital tonight but they gave us a pass so we could take him back to the Ronald McDonald house for the night. The bed is still at the hospital if we need it. He still has an IV line in so they don't have to poke him again in the morning. He is sound asleep right now from what happened today. He misses and loves you all. Again thanks for the continued support. It has meant a lot.

Surgery is a go!

Mason's pre-op cath went well and he is cleared to have surgery tomorrow. His pulmonary pressures were great. Thank you Viagra. We will provide another update later tonight. Now let's focus on a successful surgery tomorrow!

Pre-op Cath is Wednesday Morning

Sorry for the sudden stop in updates but we are having internet issues at the Ronald McDonald house. So we will do this one over the phone and yes it is painful! We checked into the RMH yesterday. They have done some renovations recently and it looks very nice. It's a wonderful resource for families of sick children, no doubt. Mason had his pre-op xray and echo today. There is no consultation following those. Wednesday morning is the big day as that is when Mason will have his cath. The results from his cath will let us know if the surgery is a go or a no-go at this point. Let's hope there are no issues and that Mason can have this much needed surgery. By all accounts he seems fine and his color looks good. So let's hope his pulmonary pressures are in check and we can all move forward. Even if moving forward is scary in and of itself. Again sorry for the late update but we will definetly update again tomorrow.

Change in Plans

So, the hospital called yesterday to confirm our appointments and said that Mason's xray and echo were on Tuesday not Monday. LET THE CRAZY BEGIN! This actually ended up being a blessing in disguise. It will allow us to stay an extra day in Grand Haven for vacation. We had also planned to spend the day with our dear friends, the Lentines',on Tuesday so that was not going to happen. After a few texts and a brief phone call, our friends have invited us to spend the night at their new house (they move this coming Sunday!). We are so blessed to have such great friends and I can't wait to see Mason's little girlfriend, Jillian, who is about 7 weeks past her Fontan surgery.

Back to vacation! First we went Holland to see the Windmill and buy some wooden shoes (will add pictures later - they are on the other camera). Mia and Mason (and Randy) got to ride on a Carousel. I think everyone had a good time but it was nap time. While Mason took a nap, Randy took Mia to the beach! And from the animated stories she told when she returned, I think she loved it. Randy also took plenty of pics and video for Mason and I to see. I would have loved to been there but Mason needs his rest before his big day. We plan to take him up there later tonight when it is not as hot. Wonder what he will think of the sand?

Mia enjoying the beach!

As many of you know, we have been really selective as to where we have taken Mason especially public places. And I think we have created a monster. He has no idea how to act in a resturant! All he wants to do is run around and find the exit signs. I don't know why but this kid loves Exit signs! Anyway, I feel so bad for the customers around us because he is so excited to walk around and be a wild man. He is very social when he does it and says hi to everyone but that is only cute the first few times. Randy and I have tried to tame the wild beast but we normally just throw in the white towel and give up. We basically just take turns walking round with him. It is that or hold him in my lap while he screams - I tried that and it wasn't pretty and the rest of the customers would not have been happy if I had continued.

Here is my little beast running around the resturant. I have briefly lured him over with a piece of bread - one of his favorites!

On the beach!

Okay first I want to correct myself from last night. Apparently Herbert Hoover was born in West Branch, Iowa. Not West Branch, Illinois. That goes to show you how much I was paying attention and/or how much I was in a trance from driving all day yesterday. Just use google for all of your Presidential facts from now on instead of Mason's website.

Anyway, we made it to Grand Haven, Michigan today. We got a hotel on Spring Lake right off of Lake Michigan and it's decent. We took the kids to the beach this evening, checking out one of the light houses while we were there. We then hit up an Italian restaurant before calling it a night. Surprisingly for how tired and out of it Amy and I were from driving all day, the beach recharged us. It was fun just to walk along the beach and take the view in. Mason was confined to his stroller so I don't know how much fun he had at the beach but he got plenty of running around time in at the restaurant. I know kids running around a restaurant can be annoying to others, but knowing what I know about Mason and his underlying condition, it's fun to watch him be a normal little boy!

Kids on the pier!

Lighthouse off of Grand Haven State Park

Mia posing in front of the "be careful walking on the pier sign"

Mason not wanting to pose for the camera!

Michigan Bound

We are off! We left for Michigan Tuesday evening stopping just north of Kansas City for the night. We traveled another 8 hours today and are staying the night in Ottawa, Illinois. Tomorrow we will be heading to Grand Haven, Michigan where we will be staying for a couple days before arriving in Ann Arbor on Sunday. We can't wait to get to Grand Haven so we can unwind for a couple days before the big week. Although seeing how the kids are still bouncing off the walls at 10 at night, unwinding may be a bit optimistic.

If I had to describe today's trip in one word it would be: presidential. On Mia's 5th or 6th restroom break we stopped in West Branch, Illinois which is apparently the birth place of former President Herbert Hoover. Who knew? Well outside of Herbert and his parents, who knew? They have a Presidential Library there along with his birth home. Anyway, we drove by the library quickly so we could say we've seen a Presidential Library. He is also buried there I believe. Then we pull into Ottawa and apparently it has some significant connections with Lincoln as his face is painted all over the place. I also saw a sign along the way saying "Ronald Reagan's Birthplace". Which has me wondering how many Presidents are connected to Illinois? That makes at least 4 for those of us that follow the news. ; )

Mason has been a handful so far. He won't sit still at all. Next week should be a lot of fun!

The Next Surgery

I've had several people ask me what this next surgery entails so I thought I would write a post on just that. Of course in terms we all can understand. Even for those of us who supposedly know what it is going on it's amazing how much we really don't know or understand. Of course if you ask Amy she will tell you she knows exactly what is going on, I go to her for clarification. To think I once set the curve in a pre-med class in college. ; )

This next and what is the final 'planned' surgery of Mason's journey is called the Fontan procedure. There is a little more to it than that but I will keep it at that. This next surgery will reroute the blood returning from the lower half of Mason's body through the heart so that it goes straight to the lungs for oxygen. Currently that blood is mixed with already oxygenated blood and gets pumped out to the body. Thus the reason Mason and HLHS babies like him have lower blood-oxygen levels during the first few years of life. Obviously the catch is this blood is being rerouted through one-half of the right side of his heart. As the left side of his heart does not work. This surgery will essentially complete 'asking' the right side of his heart to do everything including pumping blood out to the body which it was not designed to do. We can only hope and pray it can. We also need the pressures in Mason's arteries and lungs to be ideal before he can have this next surgery. So please keep him in your thoughts and prayers the morning of his pre-op cath. As that will tell us everything. Asking these little hearts to function in this manner is asking a lot. This is the reason they do this reconstruction in 3 different stages over the first few years of life.

Hope that helps................

Happy 4th of July!

We hope you are having a good 4th of July. The summer is passing by too quickly. With that comes Mason's next surgery, the Fontan procedure, which is scheduled for July 21st. That's right, Mason's next surgery is less than 3 weeks away! We are planning to leave for Ann Arbor next week! We are actually leaving a couple days early so we can stop along Lake Michigan for a couple days so the kids can have a 'normal' family vacation (expect updates!). This will be the 3rd summer in a row we have spent time in Ann Arbor. Hopefully the next time we return, it is only for a visit! I think all of us are looking forward to the mini-vacation, the surgery itself not so much.

As for Mason himself, he continues to amaze/impress/aggravate us. He's about as typical a little boy you can get. If you don't believe us, you should see the scotch tape all over our TV! Right now if there is something you have that you don't want thrown down the stairs, colored on, thrown in the trash, etc.......you keep it out of Mason's reach. Sometimes I step back and think to myself, how fortunate I am to be aggravated at my son. It's probably strange to read that but for those of us with heart babies, you know what I mean. These little kids are blessings in disguise.

With less than 3 weeks before Mason's next surgery expect more, frequent updates. We will be arriving in Ann Arbor on the 17th. Mason is schedule for a pre-op echo on the 18th. He has his pre-op cath on the 20th (pray for good news on this one). With his surgery being on the 21st as previously mentioned. Happy 4th!