Brody Just Being Brody

Brody!!!  When you choose a name for your child you choose a name that you like and that you think will suit them well in life. Brody is now known in the ICU as Brody just being Brody. Yesterday was a great day...

He was out of bed.. Played with some monster trucks and just in general did a few of the  old things he loved... Saying Uhhh---oooo or Ohhhh no... Throwing and crashing his trucks:) We were thrilled. When evening rolled around things started to change. He was fighting a fever again... Agitated... His HR was  in the 190's... Making our hearts pound!!! Then his heart started having some ( scary) arrithymas... They are called Bigeminy arrithmias.. Basically comming from his atrium not his ventricle... Which is another positive, since Brody only has his one ventricle and it wasn't comming from that area they were able to get it under control with a beta blocker. Again yesterday we had a giant step foward... Brody out of bed and sitting on his own was amazing..the doctors and physical therapists were impressed with his strength. Our step back was the arrithmias, but we can deal with a beta blocker, which also surprisingly pleasent brought down his heart rate. A two for one:)))) Today Brody had a wound Vac change on his chest and Surgeon think we may be able to close him by Friday!!!!! The tissue is granulated and healing well. They had to use so much sedation because he is Brody being Brody. He is sleeping it off now and having a blood transfusion to help with his blood numbers. Today was a good day... Hoping for a better ( unevenful) day tomorrow!!! Kiss the ones you love!

Big strides!

Ok!! Mr. B is still fighting infection but going in the right direction:) His team seems happy with his progress. His lungs finally showed some improvement today...chest tube is still in place and draining. Will not remove until drainage slows down. His heart rate is still elevated but they are attributing it to his fevers and also to weening of fentanyl... They weene very slow but the slightest change makes a huge difference to Brody. Being able to get his sedation down will help everything.. Just a very slow process. Today Physical therapy came by and Brody sat up by himself... He has been supine for 22 days so his muscles and body are weak... Sitting up is a huge stride for him... They will now come daily and work with him. Perhaps tomorrow they will place him on a mat and see if he is able to tolerate sitting up by himself... Today he sat up but with a little help from Seth!! Big Big strides in the ICU world! They turned of his LASIK ( meds that help get rid of excess fluid)  to see if he can regulate on his own. They also turned off his dopamine ( again this is huge) to see if his heart will tolerate.. So far so good! It's only 11am here so we will see what the rest of the day entails. Last night he received his first oral dose of Coumadin ( blood thinner) for his new mechanical tricuspid valve... Getting his INR into the  right range they want is tricky... They have to find a dose that works but doing so is a fine balance. Once we find a good level we will be able to weene heprin and just be on Coumadin ( this will be life long for Brody).

Brody is showing us how strong he really is! Children are so resilient... Brody is to say the least amazing... And our miracle! We are so blessed to have him! Kiss the ones you love!! Today was a good day! Tomorrow will be even better!!!!

July 5th

Happy Fourth of July Weekend!! I hope everyone is loving the time they are spending with their loved ones. Today was a big day for Brody... He had a wound vac dressing change and the surgical team said his tissue looks great... Maybe another couple weeks and it will close up. They removed his mediastinal  chest tubes ( large chest tubes in his abdomen that were draining fluid from around his heart and lungs, Which was fantastic! Doing so caused stress on his lungs and he ended up with a pneumothorax ( air around his lung space causing his lung to collapse) So another chest tube had to be inserted into his right side to decompress and drain the fluid and air. So again big step foward with a small step back.. The chest tube is small and much "nicer" looking than those two "garden hoses" that we're comming out of his  abdomen.

We are still fighting infection but Infectious disease team is confident that things are moving in the right direction. Brody is stil on many different drips.. Again for all my

Nursing friends.. Dexmedetomidine, fentanyl, LASIK, Dopamine, heprin, milirinone, and of course lots of PRN's. Our boy is making progress. I got to hold him last night after 8 days, Seth too! Was wonderful!! We watched fireworks on TV and we're just so thankful we were spending it with our little warrior awake. Our  girl Charli is camping with family in Az but missing us terribly. Being separated from one child definitely doesn't help this mama's stress. Explaining to a 7 year old that this is only temporary doesn't go over to well. I'm so thankful for my cousin Corrie who has gone above and beyond not only for Charli but our whole family. I have so many people that have helped us. I can't begin to name names but I want every single person to know who has helped us  and prayed for us how much we appreciate your support! We have been blessed with amazing family who have traveled back and forth from all over the country to see us!! We feel the love!! Today was a good day ( minus the new chest tube) tomorrow will be even better! Kiss the ones you love😍 please keep the prayers comming!!!

Today

Today... Today was ok. Overnight was hard.. Watching your baby cough but unable to produce a productive cough is heartbreaking. Him turning 50 shades of purple and not being able to cough it up is..... I have no words... Except awful. He is still extubated which is great, his numbers are good. Heart rate blood pressure etc.... They fluctuate but they are stable. Now we are fighting infection.. Infection in his lungs, infection in his urine and we are hoping no infection in his blood, but unable to tell at this point ( blood cultures and every other culture from his sweet little body has been sent) he is on high doses of antibiotics... For all my nursing friends... Cefepime , Gentamycin , Zosyn.. And vancomycin... I just pray he breakers his 103.1 fever... It's one step foward  and 3 steps back! He is breathing on his own which is wonderful .. He still has high flow nitric oxide and 100% oxygen helping him, but  he is holding strong. This has  been a good day.. Was hoping for a

better day but either way it's a good day. Breathing tube is out of his throat! He can say No!! His favorite word. We are holding our boy soon..... 8 days seeing your boy without holding him is not natural. He wants his daddy to hold him and I can't wait to see it! Pray he responds to these antibiotics... 2 open hearts in one week didn't stop him... This dang infection won't either! He is strong... We are trying to be strong... But we have faith he will prevail! God won't make all this for nothing... Go Baby Boy go!! We love you and can't wait for you to throw all the rocks into our pool you want. God is good... He is hearing our army of prayers! Today was good... Tomorrow will be better!

Kiss the ones you love! Go Brody Go❤️

We have to try!

No new developments since yesterday.
We are still intubated, he is holding steady but really upset because of the tube down his throat. Imagine breathing thru a straw... I can't imagine that is at all comfortable. His team explained that his lungs still have fluid but due to the pressure the ventilator is putting on his Fontan pressure ( pressures that are new due to last surgeries) we have to try. So he explained a code cart would be set up... Meds drawn up so they would be prepared if he did not tolerate extubation. Pray he can breath on his own... Pray pray hard. Today was a day...Hoping tomorrow is a better day. Kiss the ones you love!

Chest Closed!!!!!❤️❤️❤️❤️

What a stressful morning... Brody's chest is closed! Closing his chest bones puts pressure in the heart but his bones are back to where they are suppose to be.. And his heart is tolerating so far. His skin is still open ( not a huge deal) and they put a wound vac on to help the tissue heal since he was open for so long. The wound vac is an amazing machine and I'm happy it's on. The black you see in his chest is the foam they use for the vac.     He still has chest tubes multiple central lines ( lines going directly to his heart) for assess, and still intubated. Dr. Spray is airing on the side of caution due to Brody's last eventful week. He did open his eyes... Beautiful blue eyes... We can't wait to hold him! It's been a week since our baby was in our arms... Soon... Very soon we hope! God is good.. Thank you for hearing our prayers! Please continue to pray... Pray... Pray.... Today is a good day!! Tomorrow will be even better! Kiss the ones you love❤️❤️❤️❤️❤️

Rest Up Big Boy

Not much has changed since yesterday. Keeping Brody sedated has been a challenge for his team... But they finally got him to a good place. Imagine a two year old waking up while his chest is still open and intubated... Not happy. Although it's a great sign he's a fighter we need him to not struggle, relax and let his body heal and rest. Tomorrow am  they will take Brody back to OR to attempt to close his chest... Once his chest is closed we can make bigger strides ( I hope). He will most likely have a wound Vac applied to his chest, a wound vac will help his tissue heal since his chest has been open for a week. Pray for the fluid around his lungs to improve and for his little body to be strong enough to close his chest tomorrow.  Our little girl left yesterday to go back to Arizona. We already miss her! Can't wait for the day we are all back together and sleeping under one roof. Today was good... Tomorrow will be better...kiss the ones you love!