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!

change of plans

Well today was Ethan's cardiology appointment. His oxygen saturations were 66%. This is normal for him, but still concerning for the docs since that is his number at rest. When he is moving around it definitely decreases.

We started off the day with an echo. Ethan was a bit cranky and didn't get as much sleep as he needed the night before, but overall the appointment went well. The echo finished and it appears that his pulmonary artery that was worked on during the cath is still open thankfully! This is a big relief so far!

Next we had the meeting with Dr. Zahka. He discussed the fact that cardiology met after his last cath. They all decided that the previous plan for surgery (the shunt connecting his aorta/carotid to his left lower lung) isn't the best option after all. They are concerned about the fact that if any bleeding issues arise with his aorta they wouldn't be able to stop it. That would obviously be disastrous.

Instead of that surgery, the plan is to replace his current homograft. This is basically the same surgery he had at 5 months. They will remove his old homograft that is now too small for him and replace it with a larger homograft. I assume it will be the same pig material that he currently has, but I'm not positive. I also hope that they will fix the aneurysm that is in his heart since it is in the same location as the homograft currently.

This surgery obviously is more complicated than the first plan. This will be open heart surgery where they stop Ethan's heart and put him on a heart/lung bypass machine. This is also going to be cracking his chest again instead of going through his ribs. They'll have the added complications of all the previous scar tissue to deal with during this procedure as well.

The plan is to do this surgery in about 3 weeks. We have an appointment with pulmonology on Monday. We will page Dr. Zahka during this appointment and he will meet with us then. The timing of this surgery is all based on his lungs. If his lungs are too sick he won't be able to come off the vent easily and will make his recovery that much more difficult and dangerous. He is improving a lot so far, so hopefully a few more weeks with his new medications and breathing treatments will make his lungs much better.

They are also considering when to do another bronch. They don't know if we should do one soon before the surgery to see if his lungs are healthy enough, or if we should do one at the start of surgery with the expectation to cancel surgery if his lungs aren't healthy enough. We'll probably have a better idea of that plan after our appointment on Monday.

Please keep us all in your prayers. We pray especially that Ethan's lungs clear up and we can proceed with these procedures. I don't yet know the date of surgery so obviously i don't know how this will coincide with his birthday and/or how it will affect the start of school. He will need a lot of prayers for recovery since this open heart surgery will be much more difficult to recovery from than the "through the ribcage" surgery. There is a lot more pain involved with the healing of his sternum and everything in this. I will keep everyone posted with the official plans once I get them, but we of course appreciate all of your love and support so much!

And by the way...the big news from the other day was Ethan was able to throw out the first pitch at the Indian's game on July 4th! It was so exciting and he did such a great job! I am going to wait to post up a blog about it until I get the pictures from the Indians and a video of him throwing out the ball. :) Needless to say Ethan loved it and had a great time - we all did!

The hospital

Here's the recap of our hospital stay last week. Sorry it took so long to finally post up!

Monday morning we went down to the Clinic for Ethan's heart cath and lung bronchoscopy.

We did all the pre-op stuff and discussed the plans for the day with all the docs. Ethan then was able to get his Versed (medicine to help with anxiety). After that things were pretty goofy in the pre-op room and he kept Callie and I laughing until cath time!

The docs did the bronchoscopy first. They rinsed his lungs and found that he is full of mucus and his lungs are very inflammed. They took some samples of the mucus and stuff. These came back showing that he has H-Flu and some blood in his lungs. They don't know the cause of the blood, but they think it's probably due to his heart leaking back into one side (the blood is only in one lung). Either way they started him on antibiotics and a LOT of breathing treatments.

After the bronchoscopy they did the heart cath. They found that his homograft (the same one that keeps clotting off) was almost completely clotted again. Dr. Golden (our cath doc) was able to use a wire to break through the clot, then he ballooned open the area three times. He worked his way up from a small balloon to the biggest balloon he's used yet in Ethan. Hopefully this will keep it open for a while!

This was the shortest cath in Ethan's life! Dr. G met up with us around 2:30 (we started at 8am) saying his part was done. They were now working on getting him off the vent and ready to move to recovery. He had some issues with his blood pressure dropping during the cath, but they were able to resolve that with increased oxygen thankfully. He also slipped into SVT again right at the end of the cath, but thankfully again Dr. G was able to stop that by manipulating his tools around. This time Ethan didn't need any extra medication to keep his heart in rhythm! :)

We went upstairs once Ethan was all stable and had eaten a few popsicles. These path few caths have really been hurting his throat (much more than in the past). Needless to say we go through a lot of popsicles during our hospital stays now!

Ethan did well during the remainder of the day/night and had no complications thankfully! We had to start doing the breathing treatments because of all the mucus and inflammation in his lungs. We also started some new antibiotics.

Tuesday was pretty uneventful. Ethan watched some movies, did breathing treatments, played puzzles and games, did more breathing treatments, took medicine, and made repeated escapes to the playroom. This time was a bit different since he was so much more tired (most likely due to his lung issues). He couldn't even walk down the M40 hallway to the upstairs playroom. We did one attempt, but ended up having to return to the room to get a wagon. Any amount of exercise just wore him out and made him really start breathing hard.

During one of our trips to the playroom the surgeon came to chat. After that was Dr. Zahka's turn to meet down there. They both told us that the surgery was going to have to be postponed because his lungs just couldn't handle the heart surgery right now. They didn't feel comfortable sedating him and putting him on the ventilator without feeling very confident that his lungs would allow him to come off the vent. Thankfully he's doing so much better now! Honestly I was relieved to hear that news, even though I knew we were just postponing the inevitable. I still hated the thought of him undergoing the surgery. The docs also brought up the fact that they're going to be discussing all the surgical options again. They want to make sure that there's nothing better they could come up with or revisit instead of doing this shunt surgery. They said it is still their number one plan (attaching the shunt from his aorta/carotid to his left lower lung), but they want to go over all the other options since there's a little more time. They said to wait about a month, but they don't want to wait too long since it only took a little over a month after the last cath before his artery clotted off again. They certainly don't want his artery clotted off before surgery actually happens again. This will have made the cath pretty much pointless.

Tuesday night we went down for a chest xray. Ethan did so great for it! He stood calmly all by himself and earned a prize from the basket. He was very excited and picked a blow up ball. Our poor roommates had to deal with Ethan throwing that ball all around the hospital room for the rest of our stay! Well, maybe that'll help remind the hospital to work on getting PRIVATE ROOMS for the patients! Lol! :)

Blowing bubbles in bed

Wednesday morning we met with pulmonology again. He just went over all the plans and new meds for the month. Then we headed over for a sweat test to check for cystic fibrosis. They were concerned about this due to Ethan's chronic bronchitis, his lung inflammation, and the severe amount of mucus in his lungs. Thankfully the tests came back negative for CF! What an immense relief! After the sweat test we went for a CT scan. Ethan panics for these scans for some reason, so anesthesiology had to come and dope him up with some happy medicine. They started off giving him two doses of Versed, but surprisingly he still panicked. They ended up having to give him Propofol and let him just sleep through the scan. By the time that test was done he was finally able to eat! Yay! The poor boy had been starving and wasn't allowed to eat because of the sedation all day! We celebrated with a McDonalds lunch from downstairs. :)

A few hours after that we had all the paperwork together and were able to go home! He's still doing the Lovenox injections (even now) because his INR is too low. Last Wednesday he was 1.4 and his goal range is 3.0 to 3.5. :( Today he goes into the lab to get bloodwork done. Hopefully it'll show a higher level so we can stop these belly shots. It's so hard for him.

We have an appointment scheduled with cardiology this Friday (July 6). We're doing an echo as well as meeting with them to set up the surgery time and make sure he's healthy enough to handle it now. We also have a pulmonology appointment scheduled for Monday, July 9th. The pulmonologist doesn't seem to have as much say in what happens, but he also wants to give his input on the health of Ethan's lungs. He also wants to make sure that they're improving with all the new meds and treatments.

We also have some very exciting news for tomorrow, but I can't share until after the fact. I'll put up another post either tomorrow night or Thursday showing Ethan's latest adventure :)

Please continue to keep us in your prayers! This appointment on Friday will tell us exactly what to expect surgery-wise and when to expect it. Hopefully we get some really good news. I think he's doing much better - his cough is improving and he has a lot more energy. I pray that his vein from the cath is still open and we don't have to worry about trying to figure out about opening that up again. We appreciate all your love, prayers, and support so much! I will post up again soon! Enjoy your July 4th!

Surgery plans

We met with Dr. Stewart today. He is our new cardiothoracic surgeon.

The meeting went well, although it didn't go as well for the kids. The plan was to have child life take the kids during the meeting. They were going to take the kids on a little tour and have a little "pre-surgery" talk with Ethan (and Callie). We were really looking forward to this since this will be the first big surgery Ethan's had since he was 6 months old! He's only had heart caths during the past 4 1/2 years. Unfortunately child life never showed up and did anything with the kids so they came into the meeting with us. Oh well. Ethan still enjoyed checking out Dr. Stewart's office and watching him draw "broken heart" diagrams on his whiteboard.

Well, the plan is pretty much the same as my previous explanation. Dr. Stewart plans on going in through the left side of Ethan's chest. They will separate Ethan's ribs. That will give them access to his lungs and veins. The plan is to deflate his left lung, go in through that lung to access his good arteries that are in the bottom left portion. They are pretty much not getting much use currently because his homograft keeps clotting off and the stenosis in his veins don't allow much blood flow down to this area of his lung. They will connect the new shunt to an artery in this portion of the lung and attach it to his aorta/carotid artery. This will allow a great blood supply to feed into his lung. The hope is that if everything goes perfectly with this surgery it will increase his oxygen saturations by about 10%! That will put him up in the 70s and perhaps near 80%! That would be such a blessing!

Dr. Stewart commented that Ethan certainly has "spit and spunk" but his color matched his shorts today. He was wearing his bright blue shorts. Lol. He definitely thinks that is something that needs to be addressed immediately, and hopefully this will do the job.

He did agree that if this helps him out a lot that we can do the other side to help out bloodflow to the right lung. He wasn't agreeing with the plan to connect the pulmonary arteries, but that'll be something to look at later down the road. This isn't a long-term fix, but it should definitely help now and for a while. It will still give us enough time to try and come up with a more permanent solution for him.

And this is a fairly safe alternative. Dr. Stewart didn't want to do anything too radical on him becuase he is so difficult. A lot of really complex plans were presented at the surgical conferences, but apparently he wants to take a slow and safe process. This is fine with us right now since we're still looking at making improvements. If this does not work (like the new shunt lets in too much bloodflow and clots, or gets stenosed and clots) then we're basically right back where we are now. He said this won't damage his lung anymore than it already is. It also won't stop us from being able to do anything different in the future (like changing bloodflow for transplant, separation, etc).

The plan right now is to have Ethan go in for his cath June 18th. We'll do the cath and hopefully everything will be smooth and safe there. The 20th will be the day for surgery. He's expecting it to take pretty much all day. Hopefully it could be shorter since there's not much scar tissue where he'll be working, but Ethan never tends to have quick procedures. Ever. Even his caths take 9 hours! He expects to have a week or two in hospital for recovery. We just pray for a really quick and easy recovery! He'll have a huge horizontal incision (around 4 inches). Dr. Stewart said we'll just add it to the collection there. *sigh* Poor boy.

Please continue to keep us all in your prayers. We have a lot to do to get ready for this and still have to figure out how/how much/and what exactly to tell Ethan to prepare him for this.

I'll post up another blog post in the next day or two about our end of school and zoo trip. :)

Hospital stay

Ethan had another hospital stay this past week.

Two Mondays ago Ethan got some kind of stomach bug. He woke up Monday night with a very high fever of 104.7! We finally got him down to a safer zone and calm around 4am. His oxygen sats were extremely low - 24% so obviously he was put back on oxygen until he recovered from this bug. Tuesday went a little better but still on and off fevers. His vomiting did subside and he started to feel a bit better. Thursday he returned to school and things returned to normal.

Memorial weekend came and we enjoyed a lot of time outside in the beautiful weather. Ethan was able to go to Thomas' Day Out (riding the trains) with Grandma and Grandpa and he had a blast. Monday night (Memorial Day) he started feeling under the weather again. He was very tired and he started getting a bit of a fever again (although nothing compared to the previous week thankfully!). This continued through the week. He'd wake up feeling good, go to preschool, come home and play, then get exhausted and feverish by dinnertime. Wednesday the school called concerned because he fell asleep on the bus and wasn't feeling well. Falling asleep is very unlike him so that really made them worry!

We went in to the pediatrician Thursday and found out Ethan has strep and an impressive case of pneumonia in his right lung. Of course that's his good lung! *sigh*

While leaving the doctor's office we got to see the Life Flight land to pick up a patient. The kids thought that was VERY cool!

Our pediatrician consulted with cardiology and upon reviewing the lung xrays they called and wanted us admitted. So we packed up and headed downtown to the hospital. We started off the night in the pod, but since he could've been contagious and there are children on that floor (cardiac floor) waiting for hearts (like little Charlie across the hall who has been there for almost a year now) they shipped us downstairs to have a private room. I wasn't complaining too much about that. :) By the time we were moved and settled in though it was around 12:30 am! Ethan was so tired and not wanting to deal with anything (like the IVs and everything he had to get). Ethan was actually so overtired that he hardly slept. He kept falling asleep, then would wake up hurting and irritated and cry. The few times he actually fell asleep for a while the nurses would have to come in for vitals or meds. It was a long night.

However, he was feeling a LOT better in the morning. He received two doses of IV antibiotics and constant fluids. His oxygen sats were at 47% upon admission. He spent the day on 2 liters of oxygen and that kept his oxygen sats in the 60% range. He was able to get up and go to the playroom so that made Ethan happy. :)

       A church group made these little craft bags for the kids in the playroom. Such a nice thing to do for these kids. Ethan loved making a picture for himself, then made one for Callie. :) He missed having her there to visit and play with him!

By afternoon Ethan was feeling good enough to eat! He hadn't had much of an appetite this past week so watching him devour his entire lunch (ham and cheese omelette, hash browns, oreos, chocolate pudding, and chocolate milk) was awesome! That really showed me how much better he felt!

He spent some more time playing around in the room, chatting with doctors, and waiting for news to go home.

During rounds I was able to talk with the doctors about upcoming plans. We have a heart catheterization and bronchoscopy scheduled for June 18th. During this they will check out everything in his heart, balloon open anything that needs to be opened, and really get a good look at the potentially clotted off pulmonary vein. Pulmonology will come in at the end of the cath and do a bronchoscopy. They think his bronchial tubes are collapsing when he breathes. They also think there is a problem with the cilia in his lungs. They don't think they work effectively and therefore don't get the "gunk" out of his lungs. This could be a very big reason that his lungs are always so wet and he is so susceptible to pneumonia. Hopefully we'll get some good answers on his lungs during this procedure.

On June 20th (two days later) the plan is to have heart surgery. They plan on putting a shunt in on the left side of his heart. They will go through his left ribcage, deflate his left lung, go through that lung, and connect a shunt (a fake pulmonary artery) from his left lung to the left side of his heart. This will hopefully increase bloodflow to the left lung (his damaged lung) without increasing the pressure to it.

The cardiothoracic surgeon (Dr. Stewart) has cleared his day for this surgery, but it's not officially set until the cath is done. If the cath shows that his heart won't handle the surgery or if there's another problem that needs to be dealt with differently then the surgery will have to be rescheduled or altered.

We will have a meeting with Dr. Stewart at some point before the surgeries to go over the details of the plans and goals. Apparently this surgery is going to be step one of a three step process. If this works out well, they will do the same process to the right side of his heart/lungs. The final step would be putting some kind of connection in the center of his heart to connect the two new "pulmonary arteries" together. This will allow somewhat correct bloodflow to both lungs! Right now they think this is the best we can hope for since the separation surgery plans were vetoed. During our meeting with the surgeon we'll go over all the specifics and a lot more details. That's just the information I have so far.

So I got a bit off track there with the surgery plans! Since Ethan was doing so much better Friday afternoon, the docs decided to let us go home! Yay! We were surprised but so happy to not have to spend the weekend there! :)

By the time we got home my throat was really irritating me. It had been bugging me a bit during the day, but nothing too terrible. I had a sinking feeling that Ethan had shared his strep with me. The kids and I headed out to the Minute Clinic and sure enough, I have strep too. Lovely. I got my prescription of antibiotics filled and we headed back home. Friday night I felt absolutely awful with fever, sore throat, and nausea. Saturday morning I was a bit better but still could barely swallow. Callie woke up and made me breakfast in bed since I was sick. She is so sweet! I wish I could've eaten it, but I just couldn't manage to get anything but the tea down. She sure did make my heart feel good though!

Thankfully we're both feeling better - still on the mend but doing better. Ethan is on and off of oxygen still. Last night he needed it since his oxygen sats were in the 50s, but today he's been off all day and still in the low 60s tonight. :) He's happy since he hates wearing the oxygen.

Please keep us in your prayers that we can continue to heal and get over this strep and pneumonia. Ethan is going to school tomorrow since it's his last day for the year. He's having a party and concert so I get to go with him. I'm not sure I'd feel as comfortable sending him if I wasn't there. Tuesday is his class trip to the zoo. I get to take him to that as well, so hopefully everything will go smoothly and we'll have a lot of fun! I know he's been looking forward to it for weeks!

I'll let you all know how everything is going and what Dr. Stewart says at our meeting. We also have INR bloodwork for Ethan tomorrow, so hopefully the antibiotics aren't making his INR too high! He started off a little low for him at the hospital. He was 2.5 and his goal range is 3.0-3.5. Hopefully that will give us a little leeway since antibiotics make INRs go up. We definitely don't want a repeat of his sky-high INR from earlier this spring!

Thanks for your continued prayers and I'll keep you all posted!

Day 7 - Last Day

So it came to my attention that I forgot to post the last day! Sorry!  :) 

DAY 7 – Last day

Today was the last day of our trip. L We woke up to yet another sunny, hot, gorgeous day!

                                     John and Ethan snuggling before the day gets going :)

We had our last yummy breakfast at the Gingerbread House. After filling up with eggs, pancakes, sausage, donuts, and tons of fruit we headed back to the villa to pack up our things and clean out the house.

We loaded all of our suitcases and belongings into the car and went to do a final walk-through of the villa. Unfortunately Ethan decided to close the door at 11:01. The door automatically locked us out at 11:00. Thank you Ethan. We had to flag down an employee to open our door back up to let us in and finish getting our things (purse and stuff). Thanks Ethan! J

When we were finally all packed up I went to the front desk to check out. They gave me a going home package filled with all kinds of wonderful things. We got so many nice things like tickets for personalized scrapbook, a copy of the star Ethan had, and something called a World Passport. This passport gives us free passes to a long list of theme parks, waterparks, zoos, and entertainment places around the world! It is such a great going away gift! I know Ethan will have a blast checking out Cedar Point this summer (since apparently he enjoys roller coasters now!) J

After that we decided to spend the day at the pool. We just didn’t get enough the day before and it was another 90 degree sunny day!

                                                       These were EVERYWHERE!

John and Ethan waving

Callie posing by the pool

                                                                     John and Ethan

relaxing in the water :)

                                                                         Ethan

Callie and Ethan by the pool

 

We of course hit the village ice cream shop after the pool. Then we toured the village one last time. L

John and Ethan walking around the Village

After our goodbye to the village we headed over to the Walmart down the road. We picked up some souvenirs at their Disney section and had to find some more suitcases to bring all of our new gifts home! We accumulated quite a lot of gifts during our stay!

Then it was off to the airport to head back home. Unfortunately our trip back home was just a normal trip – nothing super special like the way down to Florida. Thankfully our plane had little TVs in the headrests. We bought each of the kids TV access to keep them quiet on the flight. It worked thankfully! Our flight was delayed 40 minutes so we were definitely late by the time we arrived. Our poor limo driver waiting for us had to stand around much longer than planned! And it was quite a shock going from 90s to 30s in a matter of 2 hours! We arrived in Cleveland in shorts and had to break into our suitcases to dig out some winter coats and warm clothes! Lol!

Finally we made it back home and got to sleep in our own beds – it felt so good to be home even though we were definitely going to miss Florida so much!

We had the most amazing vacation and it is something none of us will ever forget! I can’t thank Make-a-Wish, Give Kids the World, and all the people and organizations that donated to help give us this experience enough! We are so blessed to have been given this gift!