change of plans AGAIN

Well, we went in for pre-op testing yesterday morning. We arrived for our 10am appointment and starting doing everything necessary for pre-op. We did a chest xray and that actually turned out really well. It showed that his chest looks even better than last time we checked! Yay! I was really relieved to hear this since he still has that nasty wet cough. At least we know things are improving! Then we had bloodwork and his INR showed that he's at 3.7. That's really good for him since our range is 3-3.5. A little high for him is preferred to try and keep any clots away. :) We met with the surgeon again, filled out paperwork, got all our arrival/medicine change instructions, and ordered and received the Lovenox injections for the weekend since we had to stop Coumadin before the surgery. While we were waiting for the medicine Dr. Stewart (surgeon) saw us in the hall and said we have to talk. Uh-oh.

We went back in the room and Dr. Golden (cardiologist/cath doc) and Dr. Stewart came in to chat. They said that all the docs didn't sign off for surgery. What?! Apparently they need all six to approve it and they wouldn't. They want to do one more attempt at something before opening his chest.

We now are scheduled to have a heart cath on September 24th. It will be a similar procedure to one we've discussed doing in the past. We haven't done it in the past due to the high risk of something going wrong though. They are going to go in and put a stent in his conduit instead of doing the surgery to remove and replace the conduit. This will open it up from 8mm to 12mm hopefully. There is a big risk in this because 2 years after they put the conduit in it started to calcify. Now there is so much calcification and it is brittle. There is a chance of the conduit cracking or breaking when they're trying to open it and place the stent. If that happens they will either have to put a wrap on the stent or take him directly to the OR and crack his chest after all to replace the conduit and control the bleeding. If they get perfect placement of the stent and it works as they think it will, then we can hopefully buy another year before needing more intervention. If they don't get perfect placement or his stenosis continues, then we will have to look into surgery or something else again soon. We just don't know what to expect from this as far as the longer outcome. The docs did mention that they only expect to raise his oxygen saturations into the 70s instead of the 80s that we were hoping for with the surgery. He's currently in the 60s while resting. We'll see.

All the doctors apologized profusely for doing this again. They explained how embarassed they were and how this just doesn't happen. They've scheduled two surgeries and canceled them both at the last minute just this summer! Their reasoning is that Ethan is "one of the most complex if not THE most complex child that they have". They reassured me that even though he's so complex and they're still trying to constantly figure out the best method to treat him they do know what they're doing. We have excellent doctors who love him and care about him so much! I know it's frustrating for them too but they just want to do what's best for Ethan. Still it's very emotionally draining to get all prepared and set for a surgery only to change it last minute. I also had to deal with taking off work, changing school schedules, people coming in from out of town, etc. Oh well, all that is fixable and at least Ethan can start school on Tuesday now! That's a bright side to this! :)

So with that said Ethan is going to school on Tuesday! He's VERY excited! We had open house this morning and he was able to meet his teachers, see his new classroom, and play with some of his new friends. :)

                                           Ethan outside his classroom

                                       Ethan on the rug in his class

                                               Ethan sitting at a table in his classroom

Then this afternoon we were invited to see the Blue Angels practice air show through Make-a-Wish! We were all so excited and it was a great show! Ethan loved it! He was even able to go out to meet, get autographs, and get pictures with all of the pilots! They were so nice and Ethan had a great time!

                                    John, Callie, and Ethan before the air show

                                           Ethan and one of the Blue Angels pilots

                                    Ethan and another Blue Angels pilot

                                All the Make-a-Wish kids and the pilots after the show

Needless to say, please continue to keep us in your prayers. Please pray that Ethan stays healthy even though he's going to be exposed to all these school germs. Also please pray that plans don't change again and this cath goes perfectly! I would love to be able to have this buy us another year before open heart!

dentist is done!

Today was very busy! We started off the morning heading downtown to Tapper Dental Clinic. We arrived, signed in, and sat in the waiting room. After about 10 minutes they called us to the front desk and said we didn't have an appointment. What?!? I calmly explained to them that even though we were there last week, they scheduled an appointment for this procedure. Everything was confirmed and scheduled with cardiology, dentist, and supposedly anesthesiology. Well, their response was you must be wrong. That dentist isn't even working here today. *deep breath* Okay...so I slowly pulled out the appointment reminder card that they gave me just a few days prior. In their own handwriting was clearly written Monday, August 20th at 10am. HA! They made us wait for another 45 minutes while they figured things out, but finally we were called back and bumped right into the dentist (yep the same one that "wasn't working"). Hmm.. Oh well, everyone was very nice and things went smoothly. We sat in the chair and they explained that they just talked with Dr. G (one of our cardiologists). He apparently told them not to pull Ethan's tooth and not to use nitrous oxide. Lovely. Since they weren't going to give him the gas they didn't want to inject novocaine either. That would've made him get all stressed out and upset. Needless to say we did the filling without any drugs, but Ethan was a champ! I was shocked! One of the dentists gave Ethan her iPhone and he watched cartoons while they went to work. He only flinched a couple of times and that was when they were blowing air into the hole they drilled. I couldn't believe how great he did! :)

They got all the cavity out of his tooth and filled it. They're not entirely sure how well it sealed because he kept opening and closing his mouth, but it should be good. And I'm SO glad he got to keep his tooth! PHEW!

After he did such a great job we had a little celebratory lunch. We had a yummy lunch at Cici's Pizza and then headed over to Menchie's for some frozen yogurt. We loved it! :) Then we had a TON of errands to run so we spent the afternoon crossing things off our "to-do" list.

I just wanted to fill you all in on how well his appointment went. Thank you all for the prayers! I know it's just a little dental procedure, but I was very nervous about how everything was going to go anyway! More updates will be coming soon - I know I'm still very behind with our summer!

dentist...

Yesterday we spent the morning at the dentist attempting to get dental clearance for Ethan's upcoming surgery. Well instead of just a quick check-up and "okay you're good to go" from the office, they scheduled yet another procedure for him. :(

As some of you may remember a few years ago Ethan was in a "I'm going to jump off every surface in the house" phase. One time he jumped off the stair and his face hit the floor before he decided to brace for the landing. *sigh* He busted his mouth on the floor and permanently damaged his front tooth. This tooth became discolored and the nerve inside slowly died over the next couple years. This damage also weakened his tooth to the point that he was able to get a cavity in it. We planned on having his cavity filled over this past winter, but with all his sicknesses and caths we weren't able to get the dentist in. Now the cavity has gotten a little worse and they want to take care of it before surgery. Of course. Since the cavity has gotten worse they don't know if they can fill it or if they'll actually have to remove the tooth. I'm really hoping they'll be able to just fill it since that way we won't have to worry about bleeding during the removal and we also won't have to worry about this affecting his permanent teeth! If they remove the tooth now his permanent tooth will come in in about six months they say based on the x-rays. I don't know how this would affect his other teeth though if a big permanent tooth comes in before the other teeth are ready to come out of the way. Oh well, we'll just have to wait and see.

I dealt with cardiology and the dentist this morning to get it all figured out. He has to have an anesthesiologist on hand just in case (they're using nitrous oxide to calm him), but hopefully there won't be ANY complications. Also they'll try to do this whole procedure without stopping his coumadin. This obviously makes it riskier, but hopefully once again they'll just have to fill the cavity instead of pulling the tooth.

Here you can see the discolored front tooth.

This is scheduled for Monday morning at 10am. Please keep him in your prayers that this goes really quickly, easily, painlessly, and without being traumatizing for Ethan! So far he likes going to the dentist because he has really great teeth (well if he didn't break this one), so he's never had to have any scary experience there! Hopefully this won't change his opinion on them!

I also spoke with his school about his delayed return. They said there should be no problem with that, and we'll still be able to do his assessments and open house and all that before surgery. :) I know he's so excited for school to start again, so hopefully being able to see his new class and everything will tide him over until he's able to return.

He also seemed to start getting some kind of cold this week. His voice is all raspy and it keeps sounding like he's going to lose his voice. Nothing else seems to have come of it though, so hopefully he can heal and stay healthy for surgery. We definitely can't afford to have any more problems beforehand!

AND...we switched his breathing medications. He was on Albuterol inhalations 3-4 times a day, but now we have switched to Xopenex. We think that the Albuterol was causing his really obnoxious behavior and inability to fall asleep before 12:30/1am every night! He was so over the top hyper and wound up on the Albuterol! This Xopenex has already shown a huge improvement in his behavior, his overall calmness, and a bit of an improvement in his sleeping at night. Hopefully this will continue to get better and better!

I'll keep everyone posted with how the dentist goes on Monday!

Surgery and Walk for Wishes

As usual, I will start off with the latest health information and then move onto some summer fun.

Yesterday we had Ethan's pulmonology appointment with Dr. Royce. The appointment went fairly well. Dr. Royce claims he is disappointed with the lack of progress on Ethan's lungs. He sounds a little better when he listened to him, but he still has a nasty wet cough that just won't go away. We are surprised that all these treatments haven't cleared it up much yet, but we're going to keep doing them until surgery anyway. That being said, he cleared Ethan for surgery officially. He said that it would be riskier trying to hold off on surgery until his lungs were clear. That would have us exposed to cold/flu season and Ethan ALWAYS struggles with lung issues during the fall/winter/spring most of all. He also officially diagnosed Ethan with chronic lung disease. According to him we're going to be using the Smart Vest and doing breathing treatments on a more prolonged basis. Ethan isn't pleased about that decision one bit.

Today we went back downtown and had our surgery consultation with Dr. Stewart. During this meeting we went over all the plans for the new surgery and the reasons for the change. There's really nothing new to tell, but we did go over all the details. Surgery will be open heart through his sternum again. This will be his third chest opening so of course there will be a lot more scar tissue to deal with. He'll have to be on bypass and they expect to have his heart stopped for about an hour. We're not sure yet whether his aneurysm will be addressed during this surgery, but we did bring it up and depending on exposure and how Ethan's doing they'll see what can be done.

They said we can schedule surgery anytime from Monday on. But is had to be soon before germ season hit. We chose September 4th. That allows us to do our open houses for schools, do pre-K evaluation, I can be home for Callie's first week of 4th grade, and I can attend her first soccer game of the season. :) This makes me very happy since I was so concerned about missing so much that week. September 4th is officially the date - and Dr. Stewart commented that Tuesday is his favorite day for surgery anyway. :) Hopefully that's a good sign.

Now I guess we'll move onto the Walk for Wishes we participated in. This was a fundraising walk at the Cleveland Zoo to raise money and awareness for Make-a-Wish. It was a lot of fun and there were lots of activities for the kids to do. Callie's Girl Scout troop participated with us so that made it extra special for Callie.

When we arrived the Make-a-Wish booth gave Ethan a special "Wish Child" shirt and "Wish Family" stickers for Callie and me. We went into the zoo, met up with Callie's friends, and did the 3 mile walk around the zoo. A lot of the exhibits weren't open yet since the walk occurred before the zoo actually opened, but it was still fun. We were able to see some animals out and about.

After our 3 miles and little stop on the playground, we ate lunch and played games in the pavilion. They had a man blowing up balloons for the kids - Callie picked an elephant holding a heart and Ethan picked a basketball hoop and ball. The balloons turned out pretty great! There was also face painting, music, food, group photos, and little games and prizes for the kids.

Callie opted for a butterfly for her face painting, and to no one's surprise Ethan went for a truck and a garbage can. That boy's obsession with garbage is crazy! LOL The girl doing his face said she never got that request before! :)

After that we went over to the Rainforest part of the zoo to check it out. The kids had a great time in there! They especially loved the little monkeys - there was a tiny baby one in one of the exhibits that they thought was hilarious. He was climbing all over the other monkeys and getting into all kinds of mischief. Reminded me a bit of a certain little someone I know... ;)

By afternoon we were all pretty wiped out so we headed home to relax for the rest of the day. It was a great time and we definitely will be doing it again next year. Hopefully we have an equally great or even better time at our Congenital Heart Walk this October 6th! It's at Wade Oval Park in Cleveland. We're doing a team again this year. More information will be coming along with a link to sign onto our website to join our team or donate. Also shirts will be made again so I'll have that info out soon too.

On a side note, please say an extra prayer for a woman who lost her little boy Pierce yesterday. He had Heterotaxy just like Ethan. He was a little over a year and died in his sleep. I know she's just heartbroken and it hits close to home since one of Ethan's defects is the same thing. :(

Also another one of Ethan's heart buddies, Kolsen, recently had surgery. He's not feeling well right now post-op, so some additional prayers for him would be really great.

Please keep us all in your thoughts and prayers. This is going to be a very hectic next few weeks getting all the necessary appointments in pre-op as well as trying to squeeze in our summer fun and prepare for back to school before surgery! Please pray that his lungs improve so that can be one less concern for this whole surgery and it would mean for an easier recovery time post-op. I know with his lungs the way they are now he's at a MUCH higher risk of getting pneumonias and problems post-op. All of your prayers and support are very much appreciated! I'll try and get the rest of our summer fun (family vacation, Indians game, etc) posted up here soon! :)

Medical stuff and some birthday fun!

Well we'll start off with the medical stuff first.

Ethan had an echo two weeks ago. The echo looked pretty good (stent is still open thankfully!). Ethan's overall checkup went well and everything sounded pretty good still (well at least no change).

Ethan at Dr. Zahka's office

The next week on Ethan's birthday (Aug 2) we started off the morning with another cardiologist appointment. Dr. Z decided to skip the echo since the previous week's one was pretty good. Dr. Z commented a few more times about the strength of his murmur and how it's changed since his last surgery. We discussed the plans for the new surgery a little more. He also commented on how he's not exactly sure that this is going to solve our problems. That was a bit of a surprise, but he said he had to be open and honest. This will create more bloodflow to his stent but they're not sure if that alone will keep the stent from clotting off again. They don't really know what to expect until it's all said and done because they're still not sure of the reason that he keeps clotting in the first place. We know that this surgery is necessary anyway because he's outgrowing his old conduit, but we can only hope and pray that this stops the clotting. If it doesn't change anything, then we're kind of back at square one having to do the repeated caths and figure out another surgery to solve the problem. We'll just have to wait and see.

On Tuesday (Aug 7) we go see pulmonology. Hopefully he'll give us the OK for surgery. Once we get cleared that his lungs are healthy enough and pulmonology signs off for surgery, then we meet again with Dr. Stewart (the surgeon). In this meeting we'll just go over all the exact plans and drawings for the new surgery.

Dr. Z thinks that surgery will be set for the week of August 20th. It's not for certain yet. We'll know more after Tuesday's appointment. Dr. Z is out on vacation and will return that week, so that's why he is expecting it to be around then. I'm personally hoping they can push it back to around the first week of September. That way we can at least attend the kids' school open houses, meet the teachers, do Ethan's Pre-K evaluation, and I can be there for Callie's first week of 4th grade! I definitely don't want to miss out on all this! Oh well, we'll know soon enough!

Now onto some better news :)

Ethan turned 5 on August 2nd! We were able to celebrate his birthday with the family the weekend before and Ethan had a great time! Callie also had her birthday at the same time - she turned 9 on July 25th. The kids loved having everyone over and got so many great presents that they've been busy with ever since - thanks everyone!

His traditional birthday breakfast. Each year we just stick a candle in whatever the kids are eating that morning for their breakfast. He gets a kick out of it each year ;)

Giving himself an EKG with his birthday stickers :)

And making a REALLY goofy face for his picture

I finally got the pictures and everything from the Indian's game first pitch. Yesterday I spoke with Meritech (the company who gave us this opportunity) and gave them permission to post up our experience and pictures on their website. :) That should be up soon since they're finishing it up now. I'll work on that post and put it up either tonight or tomorrow (finally!) 

Please continue to keep us all in your prayers. I'll have more information after the pulmonology appointment on Tuesday. Hopefully he'll get some good news that his lungs have been improving. He still has a very wet cough and that doesn't seem to be going away even with all these breathing treatments we do. I'm not sure what else can be done or what to expect if Dr. Royce (pulm) says his lungs aren't healthy enough for surgery.

I have a few more posts to include in here from our summer - it's been kind of busy and I've slacked off on the updates. :( At least we've been having a lot of fun!

Thanks for all your prayers and support. I'll post again very soon with some more information!