A week and a day!

What a week it has been!! Feels like a lot longer than a week that we were DISCHARGED from CHOP. It's been a week and a day! Brody has been loving the outside world! We had to go to the hospital every day except for two different days when we were cut free from everything! Even though we were discharged we spent quite a lot  of time at the hospital. With Brody being on Coumadin we had to keep a very close watch on his INR ( how thin or thick your blood is) because of his mechanical valve. We had to take him for blood work just about every day! Awful! Poor kid does not have good veins so getting blood is a challenge. Usually a few hour challenge with multiple people and multiple sticks just to get a tiny tube of blood.

Regardless... We did it! Brody did it! He is the strongest little boy.. He has been put thru so much... No matter how big or how little this little man prevails! The two days we were free we took advantage. Took our boy to the zoo where we met the CEO of the Philadelphia zoo... He greeted Brody with a cheetah stuffed animal and took Brody behind the scene to meet and greet some of the animals.

One of the cardiology fellows that took care of Brody set up the meet and greet for him! Was such a good time for Him.

We also took Brody to the aquarium so he could enjoy NEMO! His favorite was the ferry ride over! 

Besides our two days of fun our friend Monnie was in town on business, so we had some new company. Brody of course enjoyed her as did we! A new fresh face to hang out with! We walked and enjoyed the beautiful Penn State Campus.

We had our final appointment with our cardiologist on Wednesday!

Dr. Swast said " he looks great" yes he does! Our team here has done amazing things for Brody and for our family! For now his team says he's done! Meaning there are no more surgeries that they can do...... Now we just pray his little heart holds strong... And when it's time for a new plan we will be right there with him! You never know what life is going to throw at you... So we are just going to live, be happy and enjoy each other. We may have a new plan in 6 months or in 10 years... The Dr's basically just don't know how long his heart will last. You can't live on what if's because then you miss all the good that is happening. All we can do is love each other and enjoy life!

For now we are burnt out on Philly! We are staying close for another week before we return home. We drove to Ohio to stay with my best friend Melissa, to get out of Philly, to enjoy fresh air and not city air. A home environment is wonderful! Even if it's not ours. Another week of being close to CHOP then we fly back to AZ! Brody has been either in the hospital or at the hospital and to say the least this little guy has some PTSD going on. Hoping it will resolve completely in time. Last night was the first night Brody did not wake up screaming and yelling to go outside. Outside was his safe place, for the past few weeks he's been waking up multiple times a night just terrified screaming and wanting to go outside.  Being away has been very beneficial to him! I'm hoping it will just improve as the days go on... And the hosptial becomes a very distant memory... For all of us! God is good. Kiss the ones you love!

Trying to BUST out!!

Whewww!! We are so ready to get out of the hospital!!! We have had a pretty good week...including pet therapy!

Few small things... Like withdrawls and temper tantrums and blood draws but nothing we can't handle! Ithink we can handle quite a bit now! We are still needing to have an echo done so we can have a baseline for heart function. We tried a few days ago but Brody didn't cooperate so it was not successful. We are going to try again today with some oral medication to help calm him down!

He is to say the least done!! Done with people... Nurses... Doctors... Physical therapists... Occupational therapists... Just done!! He falls asleep and  when he wakes be it in the middle of the day or middle of the night he losses his cool! A tantrum I have never seen...  He is so upset when he wakes up... It's like he's like really??? I'm still here??? I swear he wakes up the entire 6th floor with his blood curdling screams!! Usually the only way to calm him is to leave the room... So that's what we do!! We  go outside! Or just out of the room to calm him.

Other than torturing him with blood draws and small things like echo's and X-rays we are doing wonderful! Our sanity will be even better once we can leave here! Our boy keeps us busy and we are more than delighted to take care of him... Even if we still are inpatient! His chest is healing up beautifully!! Took some time... But good things come to those who wait!

Please continue to pray for our boy...the love and prayers everyone sends are working!!! 2 weeks ago Brody could barly stand... He is walking and just amazing his team as usual! Power of Prayer!

Today is a good day! Tomorrow will be better!! Love each other... Kiss the ones you love! God is good! Hopefully my next update will be outside of the CHOP walls!!!

Its not Frost from San Tan mall but this gelato put a smile on his face!!! That's all that matters!!❤️❤️❤️❤️

Click click click

We are now in the step down unit!! A whole new team is refreshing! Brody is doing amazing! We are still trying to get some blood levels to a therapeutic range and watching his kidney function. His mechanical valve likes thin blood so we are dosing Brody with Coumadin and trying to find the right dose to get his blood to a therapeutic level. Our boy is fragile... I don't know how to raise a boy on Coumadin.... Help me!! His pain medication dilaudid is being weaned this week and hopefully we will be off narcotics the beginning of next week. Tomorrow B will have an ECHO to check his function of his heart... Off milirinone for almost a week! Hoping he shows them whose boss tomorrow! He now takes all his meds by mouth...  He takes 7 different meds 3x daily... He's a champ

The team said they are shooting to have us home by beginning of September if all continues to go well! They will handoff to our cardiologist Dr. Lindblade in Phoenix and when they clear us we will be on a plane WITH our boy back to Arizona!! Back to our girl!

Back to our family! We are thrilled and counting the days!

Each day really is a gift! I was laying in bed with Brody last night and I could hear... Click... Click... Click... It was very quiet.. It was the middle of the night.. Brody was in dream land.. The noise I could hear was his heart! The noise was a very soft precise click, click, click... I could hear his new mechanical tricuspid valve! I could not believe that was what I was hearing... He was laying there just perfect.. Looking like an angel... Looking like he didn't just have two open heart surgeries.. It was a very surreal moment! I took a deep breath and just asked God to please watch over our boy! He's our bionic boy! He is doing so well and I know it's because he's strong... He has a purpose here.. And we are going to make sure we give him the best shot possible!!

He is so blessed to have so many people praying for him.. God hears every single prayer and he is answering loud and clear! 

Brody is a blessed child and I know he has touched many hearts! I hope the message he can deliver is that life is precious! Live each day to the fullest... Don't worry about the little things... Those things will all work themselves out! Brody is  a miracle and doing so well because of his medical team... His family.. His friends.. But mostly because of LOVE! Love makes everything better! Love makes life great! Without love.... You have nothing! We held onto love...and it worked!  We don't know what the future holds for Brody... But we don't know what the future holds for each of us either, we can't live in fear... We can only live in love! Love each other! Love each other every single day! Tomorrow is never promised. God is good! Kiss the ones you love! 

MiliriNONE!!!

This has been a long stressful week! I've never had a week go slower... We started a very slow wean of his heart meds Monday. We went from 1 to .8  the next day to .6... then  0.4.... Then .2! Each day watching for signs of heart failure... Vomiting, crankiness, swelling, tiredness... Everything that Brody has already experienced! Each day was long and to say it made me nervous would be an understatement! Here we are, it's finally Friday!!!! We are turning off the milirinone... MiliriNOnE!!! We're not attached to a pole!!!!

In the mist of a very important week... We lost IV acess ( again) and Brody had to go to Interventional Radiology ( again) to have his PICC rewired! It was  dislodged and later found to have a crack in the tubing... So he went on another round of high dose  prophalactic  antibiotics to be careful no infections entered his blood stream! He will need his PICC until we are discharged... So it has a NO NO on it. Protects his line but limits his mobility. We can deal with that!

The next week we are just going to see how Brody does with the meds off, then his team will wean the diuretics and transfer to oral,to see if his heart can handle the fluid without the IV diuretics , we are headed in the right direction... We are just so happy to see our little man happy again! The non stop Ohhh Noo and uhhhh ohhhhh and biting is back! Never thought I would be so happy to have my boy bite me!! He's his spicy little self and it's just so wonderful to be around! We are so blessed. 

During the day we were granted special privileges to leave the floor. We go right outside the main entrance and watch traffic. Who knew city life could be so interesting!

He even gets to see the helicopters land and take off... The sirens, cars, garbage trucks and the bustle of the city is entertainment enough! The birds come right up and pick up his crumbs... He loves it... Were eating it up to! 

Brody is doing great! Thank you to all of our prayer warriors!! It's working !! God is Good! Kiss the ones you love!❤️❤️❤️

Big Week

The last few days Mr. Brody has been doing good! Labs are good! His INR finally came back therapeutic so he gets to get rid of his heprin IV drip!! We are down to just milirinone, and a few intermittent diuretic medication that go IV. Next week they are going to slowly start to wean his milirinone. This is the medication that is helping with the squeeze of his single ventricle. Pray that his heart is strong enough to come off the meds. If his heart isn't strong enough we will have a new plan in place. Either we will be on the road to recovery or we will start to head down a new road. They have mentioned talking to transplant team.. Which I'm really hoping we don't have to go that route. One day at a time. The team here doesn't give me the feel that all is going to be great. They said plan for the worst hope for the best..... So that leaves me with one day at a time! Brody has really perked up the last few days! He's talking, smiling and throwing things at us just like he use to!!  We are staying positive and making sure Brody has good days! 

His team wants to take him back to the Cath lab to check his pressures and function again, we are holding off and just giving Brody a chance to recoup. He looks great... His numbers are great and he is acting like Brody. Next week when we wean I think we will have a somewhat better idea of what's to come. Right now no one can give me a straight answer... Which I'm taking as they just don't know. As far as Brody goes his team is surprised by his progress even with all the setbacks. One Attending told me that they didn't think he would even come off ECMO! So here we are! 

The next few days were just letting Brody be Brody!! He get chocolate pudding for breakfast... And whatever he wants all day!! We play with lots of Monster Trucks, we watch Monster Trucks...we paint Monster trucks, I'm sure Brody dreams of Monster Trucks!!

During the week if were lucky music therapy stops in, which Brody is very receptive to! One of the few very few people Brody doesn't scream at.

Pleaser continue to pray for our boy! Pray his heart heals and becomes stronger. Today is a good day!! Tomorrow will be better!! Kiss the ones you love.