Playing Catch up!

Okay!! Brody's chest was closed last Thursday..

Of course anesthesia was a major set back for Brody. Paralyzed his gut... Lungs filled with fluid... Just yucky. He had his PICC ( line that goes to his heart  for medication) rewired Friday... Then it leaked Saturday... Then had to go for a new PICC again Sunday. Basically because his PICC was leaking he was not getting his meds. Very important meds... Milirinone for his heart, Heprin to keep his blood thin for his mechanical valve and lasix to help keep the fluid off. Now we're playing catch up. Brody didn't do well off the medications so abruptly. His team is working to get him back to a stable place. He was put back on oxygen and Nitric... I feel like we took a huge step back, which I expected. I didn't expect all the drama with IV access which just added even more of a setback:(  Here is Brody going to Interventional Radiolgy for the 3rd time to get a NEW PICC. Seth was able to carry him since he was throwing such a fit about being in the bed... Can't blame him.

Today is Monday and I'm trying to stay positive. The last 4 days have been rough, putting it lightly. I'm going to let it go and move foward. We are now on a lasix infusion which we were off of before, to help get the fluid off his body. He has been extra sensitive  the last few days and is just done with people messing with him. He just cries and says NO. So hard because we have to let the doctors listen to him, touch him, feel his liver, etc. his nurses are busy with keeping his infusions going listening to his lungs and keeping up with the constant Dr's orders that roll in. They are amazing, not only do they take care of Brody but a select few have touched my heart as they try and take care of us as well. Keeping Brody calm is almost impossible unless we give him meds, which unfortunately that is what it has resulted to:( Leaving the room for a bathroom break doesn't happen, he is never without Seth or myself! We are the only thing that gives him comfort, and we will be by his side always!  Hoping this week is a turnaround .

Our Girl is still having summer fun with family! Fishing with Papa is keeping her busy. Uncle Brad delivers kisses for us!

We miss her terribly and really just can't wait to be together!Tomorrow will be better! Kiss the ones you love! 

Big boy!

Big Boy!!! Brody has been doing wonderful!! His surgeon Dr. Spray  returned today from being out of the country for the past two weeks...he was pleased with Brody. It's a hard reality to live in the heart world... Dr. Spray said his ventricle is still "stiff".. But we just need to wait and see... See how he does off the millirone next week, then wait and just see what Brody does! Dr. Spray thinks his function will improve over time, time will tell. I hate time.

Brody is a very special baby, there are thousands and thousands of HLHS babies, but very very few HLHS ( hypoplastic left heart syndrome) babies with a mechanical tricuspid valve. His surgeon can only say time. Brody will let us know! He is letting us know! He looks wonderful, he's eating and being the spunky little man we know.  His chest was closed yesterday, finally!! Brody hasn't had a chance to just recoperate, there is always something that sets him back! Hoping today was the last big thing for a while! They had to close his chest In three different layers, so he has a drain in place ( Seth calls it the grenade) to drain excess fluid from all the tissue layers. He is very sore, still on morphine around the clock but that should be done in another week! Then just Tylenol! Today he had to go to Radiology to have his PICC( line in his right arm) rewired. He did great, woke up and was ready to eat! Even if did fall asleep eating...

Today was a good day! Tomorrow will be even better! Charli has convinced us we need a dog... So when we get home we will be adding a dog to this crazy mix! Kiss the ones you love! Tomorrow is never promised.

Hope

It's been a good last few days! Today is starting off even better! One of Brody's heart friends received her new heart last night! There's always hope! We are reminded every single day how fragile life is... I always end my blogs with kiss the ones you love..... we do not know how tomorrow will end, so enjoy each day! Where there's love  there's life, Where there's love there's hope! I hope each day is better than the day before:)      

 

Brody had a good weekend! We are off Nitric and down to just a little oxygen. The " hardware" on his face is getting less and less. His sump was removed, tube that was draining his belly. He wants to eat and eat but just keeps vomiting. We are working with him... I will clean up and clean up.. If that gets his belly working! He loves eating noodles!! A very special friend  delivered some fancy Italian food yesterday Brody is loving it!! Spaghetti is a big hit!

This week we will be preparing to go back under anesthesia on Thursday. No fun but has to be done.. They are hoping they can close his chest completely! Intubation and narcotics and the whole nine yards again on Thursday! They said it should take under an hour so let's hope so! Get his chest closed so we can focus on getting his heart off milirinone. Next week if all goes ok with chest closure they will start to play with weaning his heart meds. Echo is lined up for tomorrow so they can check his function before chest closure and after chest closure. Closing the skin and muscle will put extra pressure on his heart, echo's will give them the information they need to see how his function is affected. Brody is looking more like himself. He did get a haircut... Still have to look good even though we're in the ICU! 

We've kept busy with physical therapy and even music therapy which Brody thoroughly enjoyed! Was very nice to see him engaging with the therapist! Music is good for the soul.

Yesterday was good! Today is better! Tomorrow I hope will be even better! Kiss the ones you love❤️

Missing our girl! She sends pics everyday! Charli is strong and understands why we are gone... But we miss her terribly and can't wait until we are all together again. Kiss the ones you love!!

One day at a time😍

Ok... Let's see.. Brody had his chest tube removed..hoping his lungs continue to improve:) His internal jugular IV ( in his neck) was taken out!!! He took a trip to radiology to get a NJ ( naso jejunum) line into his intestines because he continues to vomit the other tubes... This one is in the beginning of his small intestines. Hoping he doesn't vomit this one! They are feeding via the NJ, he shows interest in eating and drinking but is just unable to keep anything down. We let him eat and drink as he wishes and just change clothes and linens multiple... multiple times a day.

Gastroenterology was consulted and he will go for an upper GI study sometime this week. He continues to show us little signs of Brody. He says his words... When he feels up to it.. Kisses us and loves to drink Gatorade!  We watch movies, take naps and in the afternoon a wagon ride. He is still very weak and continues being weaned from narcotics so the combination makes him sleepy, or if they wean down the narcotics he still vomits from withdrawing, or he's just a cranky two year old  tied to to many lines! Our little man is starting over... He has to regain his strength to learn how to 

Stand again.. Walk again... Run again... We pray for the day he can jump out of bed!

Every day is different. Today they are starting to wean the nitric, medication that is going with oxygen to help his pulmonary blood flow! A new medication was started to replace the nitric. Small steps... Big steps... One thing at a time. They haven't even touched his medications that help the function of the heart so perhaps next week they may start to wean the milirinone ( medication that helps the squeeze of the heart). His team here at CHOP is amazing, we know he is in the best place, just hoping and praying little by little he continues to improve! Thank you for all the continued love and support. It can be very taxing physically, emotionally and financially  having a child in the hospital. A huge thank you to my cousins Jessica and Corrie and everyone who has contributed to the fundraising  for Brody's medical  care. Words can not describe how thankful we are. Our main goal is to focus on Brody, and this has allowed us to do just that! 

Http://fundly.com/Brody-s-perfect-heart

Continue to pray for our boy! He is Strong!

Pray his function stays strong, pray his liver swelling goes down, and pray that we can start getting up and out of bed more! Food and exercise is good for healing! Some of the most basic things make a huge difference!! We are so loved, Brody is so loved! We try and be happy everyday for him, one day at a time!!  Tomorrow is never promised.. God is good! Kiss the ones you love! Go Brody Go!!!

Chipping Away!!!!

Today is July 17th... Brody's first surgery was June 17th... One month later... 5 weeks later.. A million hours later... However you look at it were doing better!!! His chest X-ray is starting to finally look normal...

The last few days have been very busy. His chest/lungs were not looking well and we were discussing another chest tube, but right now we are GOOD!! Hoping the fluid stays off... Basically a waiting game to see what happens. His lungs have been put thru quite a test... With this new Fontan circulation and the mechanical valve his lungs are needing extra extra time to recuperate. We are in the process of transitioning all his IV drips to oral medications. The problem is his liver is still very enlarged ( due to his new Fontan circulation) so he is unable to keep anything down.  His liver is taking up too much space in his abdomen so He has a ND  (into duodenum, part of stomach) tube in place that goes directly to his intestines, so he is on full feeds via the tube. He vomits multiple times a day.. Occasionally he will vomit the tube and another one will have to be put down. Calories make a huge difference in recovery, along with physical therapy. PT has been working on Getting  Brody rehabilitated, he can sit but  is unable to stand or walk. The doctors say we are chipping away... Piece by piece little changes...

Brody is starting to communicate with us.. He says his favorite word NO... No..NO all day. Poor baby is sick of people always messing with him. He is a trooper, we explain what they have to do and most of the time he allows it... Many times he does NOT! Brody is a warrior! He is strong and is not giving up... He amazes us everyday!! Kiss the ones you love!!! 

Small steps.

Drained! Easiest way put it. Brody has a chest tube in place that is suppose to drain the fluid from around his lungs. The fluid is so thick it clogs the tubes, now instead of putting the medicine ( altepase) in his tube they are putting it into his pleural space( space around your lungs)  SCARY to say the least... Altepase is a medication that is used to dissolve blood clots, but In turn when The team administers the medication it beaks down the fluid inside his lung space that contains parts of blood called fibrin. Basically it just makes the fluid thin and it drains. Works great but comes with great risk. Brody is already on a  heprin drip.. And on Coumadin, both blood thinners. Doing the altepase could cause an internal hemmorage, so when they do it it's a big deal and of courses causes major stress, anxiety, whatever you want to call it... Sucks!!! Keeping a close eye on the chest tube is priority, along with a million other things. Since Brody has been here for so long he is basically addicted to the narcotic drips and getting him weened off is disastrous! He is withdrawing and it is awful to watch. His chest still is not closed so I finally said no more wening anything until your done with his chest closure. I see no point in putting him thru withdrawals when he has to go back to OR to have his chest closed, he will just come back on all the narcotic drips anyways.

So we are leaving his drips alone, a 10% decrease was done yesterday to his fentanyl  drip and made him withdrawal, we are giving what they call rescue meds to keep him calm. Ativan is helping. He is ok, he is STRONG, they stitched his chest tube to his skin today to make sure it was secure... Was quick and over with but still having to watch it happen to your baby is nothing I wish on any person! He is strong and making us Strong! Today his is getting another blood transfusion, an NG was put in place to start feeding his belly and multiple dressing changes. He is exhausted, and it's only noon:( If I could have one wish.. It would be to rid the world of all CHD's, our babies should not have to endure this! I know many of you follow my boy but there are so many babies who are suffering, just like Brody. Some waiting for hearts, some on Berlin hearts, you can see the hurt in every single persons eyes in this place. Please when you pray for my boy pray for all the beautiful babies who are sufferining from CHD. A huge thank you to my family for all the love and support. We appreciate every single prayer and feel the love! Thank you Thank you Thank you!!! Kiss the ones you love, tomorrow is never promised.  God is Good!

Roller coaster!!!

I thought roller coaster's  we're suppose to be fun.... This one definitely is not FUN!!  Brody... Brody... Brody... One day he looks fantastic, he is eating noodles... Then the next day 360 degree turn. I'm almost leary  to post anything positive because it almost like  I KNOW it's short lived. Uhhhhh... What can I say that I haven't already said. Yesterday Brody had to go back to the Cath lab... Cath lab gives the most accurate data.. Better than an echo.. Better than lab data... Better than the screens ... So with that said nothing new was found. His team did widen his fenestration ( little hole In his heart) basically it helps with pressure. The Fontan ( 3rd surgery he had) now has applied new pressures, along with his new mechanical valve. His heart was use to a leaky valve so putting in a competent valve adds pressure to his heart. Catch 22... He needed the valve but now that he has a great valve it's causing to much pressure which is making his pleural effusions ( fluid around his lungs) worse.  Chest  tube that is in place keeps getting clogged because the Fluid in his chest is draining thick. I'm eyeing it like a hawk an I'm sure they think I'm crazy.. I don't care... Call me crazy...it's like I'm at work but not getting paid!! Lol!! For all my nursing friends I will be an expert at chest tubes when I return:))))) Brody did come back intubated ( on a ventilator) of course... But we were able to extubate him last night... Every time he goes under anesthesia it takes him 24 hours to recooperate from all the meds they give him to sedate him. He had to get a new ART line ( line in his artery) but it's in his groin now so of course that's super uncomfortable too. We were hoping to close his chest today but that's a no go... Really no big deal just the skin ... And I love the wound vac... Looks awful but tissue under the black foam looks great!!! Which is exactly what the wound vac is suppose to do!  Pray for his Fontan pressures to come down and his lungs to recooperate! I looked down and realized I didn't even know what shirt I had I under my hoodie... Seth and I have been to say the least sleep deprived! We are now taking turns.... He does night shift and I do day shift if Brody permits. Sometimes.... A lot of the times he won't even let Seth leave the room.  Today is a day... Hoping he wakes up and wants noodles again! Hoping for a better day tomorrow! Kiss the ones you love!! God is good!