Surgery again

All to familiar..... Again feels like we never left. Brody has had an eventful stressful painful last couple of days. We just keep telling him what a strong strong boy he is!   Power of positive goes a long way. Brody has no access... So until we got the PICC which was yesterday he needed lab work every 4-6 hours because they are trying to get his blood level to a good place for surgery.

Basically because of his St. Jude's valve he had to stop the Coumadin ( makes blood thin so no clots form on valve) and bridge him to heprin. Surgeons are able to easier control blood levels on heprin vs coumadin. I'm just happy we have the picc and trying to move foward. Having to literally hold your baby down to be repeatedly poked it just awful to say the least. I don't have words to describe how it makes us feel.  We do it because it's necessary but still makes me feel horrible.

Brody's gallbladder will be removed hopefully laparoscopically ... They will make 4 injection points in his belly... Air up his abdomen with co2 so they can see the gallbladder and hopefully just remove it with no complications.  Because of the  Co2 they use to inflate the abdomen it could possibly change the pressure in his chest cavity... If it does they will have to stop the laparoscopic surgery and cut his abdomen. Let's hope for the first one:)

Along with all this Brody has started having fevers... High fevers... Makes him so lethargic.. Then the Tylenol kicks in and he's better until it wears off. So far all cultures are negative... They are assuming it's his gallbladder that's causing fevers. Hopefully after surgery Tuesday he will be on the up and up.  Bedsides all the awful here... There is good! We're on the step down unit and not in the ICU!! Brody did a victory lap in the ICU thanksgiving night... He was giving high fives and the Dr's we're hugging us saying how awesome he looks!! The same Dr. That told me to plan for the worst and hope for the best was on that night and in awwww of B!! Was a great feeling!!! For all of us:) 

We spend a lot of time playing in the playroom.. Walking the 6th floor and playing hockey and of course riding in a monster truck!

Brody's vocabulary has really improved the last two weeks. Stressful situations I think increase his need to communicate:) we of course are constantly trying to reason with him... But he's 2... They don't reason... And what two year old vocab should include IV fluids... Picc... abd blood work. NO is still his favorite word! We're keeping him busy and trying our best to keep him happy. Hospital life is somewhat of a norm for Brody so he's ok:) Its cold and gloomy here... We can't wait to get back to AZ! Can't wait to get back to our girl! She's having fun with family and with friends.. But still miss her

Hoping for some easier days for this strong little boy!! His heart is looking great and we have actually took away some meds and went down on his heart meds! CHOP is so amazing... As much as we don't want to be in the hospital I'm so thankful we are able to get Brody the best care possible. We met a family last night from Moscow.. People come from all over the world because of CHOP! That's why we're here!!!

Brody is going to lay low today... Eat chocolate pudding and play with dad!! Today is good! Tomorrow will be better. Kiss the ones you love❤️

Thankful

What to say?? Back in Philly and it's Chilly!!

Brody had a severe episode back home and we jumped on a plane to come back to CHOP. His gallbladder is giving him major issues... Now he has pancreatitis because his gallbladder is not well. Brody is a champ! He's strong... But being here is no fun! We try and make it as non traumatic as possible but that's impossible! Currently Brody is strapped down in basically a straight jacket to do a hyda scan. They inject meds and scan his body to see how his liver digests the meds.. Then they give a med to make the gallbladder spasm or squeeze to see if it empties as it should.

Hearing him say mama and not being able to pick him up and comfort him goes against every bone in my body! I pace back and forth and take deep breaths... This exam is two hours!!! Say a prayer for peace for B. Later today or tomorrow Brody will go for a central line. His IV access is horrible and yesterday he had 8 sticks, two sticks in his arteries in his wrists with no luck. He was severely dehydrated and there's no way anyone was getting any blood from him.  Was not a good day... But then we were done!  We went for rides... Went to the playroom to see NEMO and of course played with Monster trucks!

We've seen about 100 different doctors over the last two weeks... General surgery.. GI surgery... Cardiac... Anesthesia... I'm could go on and on... But I think we're finally getting somewhere.

After this scan they will be able to determine if his gallbladder needs to come out... Which I'm pretty sure it does. We're also struggling with Brody's blood work... He got sick quick so his kidney and liver need to recoup as well. 

We had a little scare with his blood pressure but was resolved with fluid. He was not eating or drinking so his blood pressure tanked! But he better now!

We are here and making the best of it for Brody... This is his norm so some of it HAS to be fun.

Missing our girl terribly...but thankful we have such great family to take care of her! Grandma Di is staying with Charli....we know she's well taken care of but miss her so!! She had her first dance performance and we missed it... But she did awesome and looked beautiful.

Be thankful today! Im thankful for my family...family is what makes us hold strong. Thankful we were able to travel here for Brody. Thankful we still have this beautiful beautiful boy!!

God is good.. Kiss the ones you love

Not so simple

What to say??? All I can do is kind of just laugh... I mean seriously what two year old gets gallstones? So here we are inpatient at Phoenix Childrens. Brody was experiencing back pain for about two weeks, we kept stalling to come in just because of what it would entail. Couldn't be avoided. We were in the car running errands and Brody just started screaming in pain, then he acted like he was going to vomit, then he passed out in my arms from pain. He was ok but scared me so right to ER we went. 9 hours later we figured the gallstones out by abdominal ultrasound... Belly X-rays, back X-rays and all lab work were normal.  We were admitted and told surgery would most likely happen. On that note I was prepping myself saying he's been through so much this will be easy.... Apparently not. After a very long day of going around and around with cardiology and gastroenterology and surgery it was a final consensus of risks outweighing benefits , I absolutely agree. Brody is perfectly happy besides the bouts of pain here and there. Of course the stones can cause more potential problems, serious ones, liver and pancreas damage. Brody needs his organs to stay as healthy as possible so he will be able to be a candidate for transplant. So on that note, what to do??????? With all his issues with the mechanical valve, being on coumadin( blood thinner) and just the recent past he's endured he will need to have all input from his entire team east coast team and west coast team to make the best decision for Brody. 

During a laparoscopic gallbladder removal there are usually four puncture sites in the abdomen... They inflate the abdomen with air to help visibility to see the gallbladder, pretty simple. EXCEPT the pressure in the abdomen will change the pressure if his one pumping chamber putting him at higher higher risk! Not to mention there is a 50% increase in the occurrence of thrombus ( blood clot) 6 months after a mechanical valve has been put in. Again another huge factor for Brody since is valve is new, and since they will be playing with his INR for the surgery... INR tells us how thick or thin the blood is... Brody's blood needs to be much thinner than ours due to the valve preventing thrombus hence why he's on Coumadin. But for surgery it can't be to thin.. The gallbladder has to be slightly separated from the liver, again another risk of bleeding for Brody.  We talked to CHOP and Brody needs to be evaluated by a Fontan ( last surgery Brody had) liver specialist to evaluate his liver before surgery. We will most likely head that direction in a few weeks to get this taken care of! 

Besides the pokes Brody is happy! He's loving all the attention and has made me do about 200 laps around our unit!

Other than this admission Brody has been doing fantastic.. Last echo showed a slight improvement in function which means the meds are working and his heart is somewhat trying to regain function. We are in the process of being established with the heart failure team at Stanford in Palo Alto, CA, since we have not been evaluated we will continue to see CHOP and have them manage Brody from afar until we bridge our care with Stanford! Whewwww! Hope that's not to much info!!

God is good every day!

Sister Charli came and stayed till 11 pm with Brody then was still a champ and made it to school and dance the next day! Seth was out of state working and made a 17 hour road trip to be here for Brody❤️❤️❤️ He is so loved!

Kiss the ones you love😍❤️😍❤️God is good❤️

Heart Failure

I have always said God is good!! He is!! Having a baby is the most wonderful thing I think any woman can experience (my opinion of course). Having a baby and wondering how long you will have him should not be part of the equation. So what to do?? Take a deep breath... Sometimes a few more and live life! Love each other. Brody listens!

Brody had more appointment and the consenses is his heart function has still not fully recouped to where his function was prior to Philadelphia. We are still hopeful he will show improvements in the next months... But regardless it is known as heart failure. When he was born he had heart failure, obviously he was missing part of his heart, when I receive bills in the mail his clinical diagnosis is heart failure... But when a cardiologist flat out says heart failure it seems to hit home like it's the first time hearing it! Brody is in heart failure, again this is not new but having your cardiologist send you to be evaluated by a heart failure team is new! The past two years of our lives have been spent wrapped around hypoplastic left heart... Now even though B has HLHS, the palliative surgeries along with his new St. Jude's valve is as much as they can do. There are no more surgeries to help improve his heart. 

What to do? We make the best decisions given the information at hand... We take him to the best Dr's and we love him and believe that everything will be ok! Everything will be ok! 

At our last appointment when the words heart failure were used...more so than normal, Brody was started on a few new meds. Digioxin and another diuretic to help with his ventricular function.the combination of 9 different meds is know as a heart failure cocktail... I need a cocktail:)

In 5 weeks we will do another whole work up with echo's and ekg's to see if the meds are helping? To see if his function is improving? Regardless we will be referred to a heart failure team.  We are still   researching but it looks like we will take Brody to Stanford in California to be evaluated and treated by their heart failure team. In the heart world after the Fontan... The last of the 3 staged palliative surgeries, the time is known as the honeymoon phase. Everything is usually good for a time before the inevitable comes up.... Transplant. Unfortunately I  dont think will get that phase. The unknown will eat you alive... So with that said I am really going to try and let it go! We can take Brody to the best team make the best decision and love him... The rest is in the hands of the man upstairs! When it comes time all we can do is pray.

As for now our plan is to enjoy each other! Enjoy life...enjoy my handsome  man! My beautiful girl! And my amazing little man! Brody is here for a reason... And we intend to give him as many good times as we can!

God is good! Live for today! Kiss the ones you love... Tomorrow is never promised

We're home!

Of course were home!! Everyone knows we're home! It's wonderful to be home! The welcome back was so heart warming! We felt so much love when we returned home... Could not have been better❤️ Getting back into the home life is busy! Being gone for almost three months and then just being thrown back into normal life was a bit of a shock... A good shock! We have been busy with appointments for Brody... So far he has good reports!

We are still monitoring Brody very closely... His INR finally reached a somewhat steady number. I'm still of course very nervous with Brody. A simple fall which toddlers do all the times... Could mean a trip to the ER. We of course do NoT want any unexpected hospital visits so paranoid parents is what we will be! 

I've always been somewhat overprotective... Like all mamas.. But mine was just kicked into overdrive! Brody is enjoying life, his sister and his home. Adjusting will take some time, but each day is a little better. He still has some Post Tramatic  Stress from the hospital, so nights are long. He wakes up scared, we turn the lights on, show him

his sister sleeping, I sing to him, we go outside, then all is ok. Time heals all wounds, he just needs some more time to FORGET it all! I hope he doesn't remember anything! The next few weeks will be busy with appointments. Speech therapy, physical therapy, and of course more cardiology appointments. All we can do is hope for the best and love him!

Home life is perfect! There is no place like home! There isn't! We are so happy to be home with our girl!

Brody is full of life! Every day he makes us smile... Charli is enjoying us being back of course, but even Charli needs some time to re-acclimate to home life. Our family is so blessed to be surrounded by such supportive family and friends. This journey was tough but the love that surrounded us made it possible! I truly believe love is what brought Brody thru... What brought us thru... We all have our struggles... Everybody has different struggles in life, if we have love we can get thru it! Love each other, help each other and all things are possible!! The proof is right here!

Just to keep things exciting we held true to our word and we are now +1 in our family! Charli picked out her new puppy last night! She is a Queensland Heeler and proving to be a perfect fit to our family! People keep saying ohh your Crazzy for getting a dog...if we can handle our little boy in the ICU for 9 weeks, we think our little pup will be a piece of cake! Dogs are good for the soul❤️

Happy Friday to everyone! I hope the weekend is blessed. God is Good kiss the ones you love❤️

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!