MRI

Trev had his cardiac MRI today. He needed to be under general anesthesia because the test is 90 minutes long and he has to be completely still. They did the dye contrast to check the function of his heart. Depending on the outcome of this test he may have open heart surgery this year.

We got an early start and left at 9:30am. Good thing we left so early... There was no parking!! We finally found a spot to park and it was a compact spot of course... I had the truck which is not so compact :) After about 15 minutes I finally got the truck to fit in that small space! We got checked in and had about 15 minutes before our appt. About 12:30 Trev was finally prepped and ready to go to sleep in a big machine! He was pretty excited about the whole thing... He has been telling his friends for days all about it :)

I got to go back and watch as he fell asleep to root beer flavored gas. I have never watched him fall asleep before as cardiac kids can not have their parents in the OR with them. It was hard to watch him.

After 90 minutes he was wheeled back to the room and was sleeping soundly. It took him about 30 minutes to stir. Another 30-40 minutes to wake up. He was really funny waking up :) He tried eating his popsicle and kept missing... He was a happy camper though as he got popsicles, juice and pop in recovery.

After he got his wheelchair we went to the playroom and he played XBox for about 20 minutes then we headed to the cafeteria and he got something to eat. We had another fun day at Childrens. It was about 5:30 when we got home. Next time he misses school though hopefully it will be something a little more enjoyable :)

Again he was a ROCK STAR!!

Stress Test

Trev went in for his stress test last week. He was a ROCK STAR!!! We started the day early and picked up Grandpa on the way. Trev ate a light breakfast and snack so he would be ready for his big test! This was a first so we did not know what to expect. Overall it went pretty smoothly.

When we got to Children's we headed for cardiology and were ready to go. Trev was measured and weighed. As soon as he was measured they said we might have a problem. He was 1.5" shorter than needed to be on the bike. The nurse decided to have him sit on the bike to see if his legs were long enough. Luckily the boy has long legs!!

He had the EKG leads put on then went to the room for the stress test. He did some breathing exercises to get some base line tests. He then got on the bike with his EKG leads, mask, head band and blood pressure cuff. He was a trooper throughout the whole thing!

He ended up making it 7 minutes on the bike with a lot of resistance. Great Job Trevor!!

When I grow up....

If you asked this question a few months ago the answer was: A builder: Trevor, a doctor who works on Trevor's heart: Kara and a teacher: Allie.

Well A LOT has changed in those past few months. Trev still wants to build everything from houses and hospitals and schools and the tallest building in the world. The girls however have different plans.

The girls have been obsessed with Ariel lately. So that is where their new dream has grown. I was informed when they grow up they are turning into Ariel and Daddy will turn into Prince Eric and they are going to marry Prince Eric! Oh yeah, first I need to dye their hair red so they can turn into Ariel. I wonder what they will want to be next week!?!

I wish to be...

... A Jedi during Star Wars Weekend!

We found out last May that Trev will be receiving a wish through Make A Wish. It has been very hard to accept the fact that he even qualifies. He has been doing so well right now that we tend to "forget" all that he has gone through. I have always had it in my head that it is for kids with terminal illnesses. After talking with the wish grantors that is what it USE to be when it first started. Now they grant wishes for kids living with life threatening medical conditions which Trev does have. I found out that most kids who receive wishes go on to live healthy lives.

We met with our wonderful wish grantors back in June. They brought a small gift for each kiddo which was wonderful. Scott and I filled out a ton of paperwork while one wish grantor spoke with Trevor. They asked him all kinds of things from his favorite color, food, restaurant, sports. Trev's official wish is to be a Jedi during Star Wars Weekend. He is just mildly obsessed with Star Wars :) His back up wish was to go to Lego land.

Right before Trev's birthday we found out his wish was granted. What a wonderful birthday present! Now we sit and wait for dates for Star Wars Weekend to be announced... Finally, a couple days before Christmas dates were announced! After the New Year we were once again contacted by MAW to figure out some dates we may want to go. Now we wait again to hear when we will be going :)

It has taken us awhile to accept the fact that he qualifies. We are now starting to get excited and we are very honored that Trev is being blessed by such a wonderful organization! Between Kara's surgeries and Trev's extra cardiac tests it really has become a blessing and gives our whole family something to look forward to besides hospital visits and surgeries.

Cardiology

Trev had his cardiology appointment a couple days before Christmas. I was brave and took the girls with me too... What was I thinking!?! Kara was only a few days out of surgery and still not feeling that great. This is the first time the girls have come. It was interesting to say the least!

I was hoping to get in have the tests done and hear nothing has changed... After the echo, EKG and his cardiologist looking him over he had a funny look when he looked at me and then looked back at Trev. He asked Trev how old he was and when his birthday was... He wants to begin stress tests now! We were hoping to wait until Trev was 10 to start this! He is only 7! He said that his right ventricle had grown larger and it is time to start the tests to see how is heart is dealing with the stress of exercise. He wants the tests completed within the next two months. Depending on the outcome of the tests will determine if Trev gets a valve and conduit this year. (He currently does not have a pulmonary valve or conduit. They took those out when he was a baby.)

His cardiologist also wants him practicing on a bike so Trev will be comfortable riding a bike for his stress test. Since we do not have one we were able to rent one for a month. Trev can barely reach the pedals :) He is able to ride it for about 10 minutes before stopping. Hopefully that is not putting stress on his heart! We have the test scheduled for the end of January. In February he will go in for a cardiac MRI dye test. For this one he will be under general anesthesia.  Between him and Kara will be seeing the inside walls of Children's a lot these next couple of months!

Trev has had some anxiety about these tests. We are trying to talk him through it and showing him pictures online and talking to people that have had these done. On a good note he is in the 75% for height! He is growing like a weed... I think that is a good sign :)

Recovery

Recovery was tough! She had no balance at all! She could not stand up let alone walk. So we set up her bed downstairs and Daddy stayed with her each night until she had better control of her balance and she no longer needed medication at night.

The first couple days she was on 5 different meds with over 20 doses a day between them all! We were waking her every couple hours at night. We were EXHAUSTED! I forgot how tough it is to sit and cuddle your baby all day. She enjoyed many movies, shows, popsicles and ice cream during her recovery. She had so much I was afraid it was going to become a daily need for her. But one day she just stopped asking! So we were not about to ask her if she wanted any!

After being on meds round the clock the first couple of days we could finally start weening her. By the end of the week she was only on 2. She took them without any complaint. Except for the ear drops... But I think I would complain too :) She had those for 3 weeks 3 times a day. The biggest challenge by far has been keeping water out of her ears while bathing. We have to keep this up for another couple months! The other hard part is making sure she does not get her ear hit or is too active for the first 3 weeks. 4 year olds are hard to keep down!

Kara now has a surgery ear as she calls it. We haven't told her she is having another one yet. I wonder how she will react to that news!?!

Kara's BIG day!!

Kara has been SO excited for her surgery and to get a "line" just like big brother! Well that day has finally come!

Our wonderful neighbors took care of Allie and Trev while we headed down to the Children's Hospital for Kara's ear surgery. We left around 7 to get to the hospital for check in time at 8:30. Well we ran into a little snag along the way! A semi truck had rolled earlier that morning so we were not going anywhere! We called the hospital and told them what was going on and they said that was fine. We still had plenty of time. We finally arrive at the hospital a little late. Kara has her Rudolph with her and is ready to go!

We get called back to go in for prep and Kara gets to put on a gown (that is WAY to big for her) and socks (which are WAY to small for her!) We ended up getting new socks and Rudolph easily fit into the smaller socks :) Kara was a rock star as they got her height, weight, blood pressure and all that good pre op stuff. She enjoyed sitting in the chair watching tv while we were waiting. Surgery ended up being over an hour late! Kara was getting very hungry and thirsty! We tried to take her mind off of it. I too was very hungry and thirsty as we couldn't really eat either as we were with her the whole time. Finally it was time to head back to the OR. Scott got his has mat suit on and took her back until she fell asleep. She was a rock star throughout everything! SO brave!

My Dad had met us there so we hung out with him there. Surgery took longer than expected so that was nerve wracking. In the cafeteria they had tables set out where they were selling gifts for the uncompensated care fund. We did a little shopping. Ok. Maybe more than a little. But it was close to Christmas and we still needed gifts. PLUS it went to a great cause!

We decided to get something to eat and of course as soon as we sit down to eat our pager goes off! Time to see our baby girl :) We first meet with the surgeon. He said she did great BUT it was a lot more complicated than expected. Instead of one growth in her ear she had SEVERAL all over her ear. He explained this is rare and he has NEVER seen anything like it. As of now he was able to preserve the ear bones and reshape her eardrum but we do not know if this will last. She goes back in 6 months for surgery number 2. They will no more then. He told us we have a long road ahead of us and we are not out of the woods yet. He also told us to decide who was staying over  night with her and that visiting hours are over at 8pm. If there was a child that would have trouble keeping things down it would be her as they had to do so much extra work in her ear.

We then go back to recovery and get our baby girl. She is just waking up and has a big blue bandage on her head and her ear is covered with guaze and bandages. 20 minutes later the nurse tells us we will be going home!?! Um... The surgeon just said she is staying the night... SO it turns out that Kara is handling everything well enough that we get to go! I'm not too sure about this... Kara doesn't care as long as she gets a wheel chair ride :)

So an hour later we are discharged and on our way home! She is a rock star just like her big brother!