Fri-Yay!!

 It has been such a good couple of days for Brody. Since getting the breathing tube our we have been able to get more aggressive with everything and really make some progress. Yesterday they were able to take out his pacemaker wires and chest tubes. His chest tubes were still draining quite a bit but the surgeon wanted them out to help with his rehabilitation and thinks him being up more will be more beneficial. He has not been a huge fan of his BiPap/CPAP mask, but who would. The mask here covers his nose and his mouth and straps across his head. The positioning is problematic because it is so heavy and often pushes down his nose and the straps push down towards his eyes. It is a constant struggle, especially with him trying to be awake more to keep it in a good position. It was definitely adding to his irritability which is why it is nice to say we have ditched the CPAP mask and have been able to transition to a high flow nasal cannula. They started out wanting to switch to high flow intermittently, but his stats have looked so good on it, that he has been able to keep it. Yay!!! In addition to the oxygen switch, they were able to remove an arterial line and are working on starting his formula again. It's so nice watching them remove machines from his room because they don't need them anymore. I am not quite sure from here what major plans they have for him this weekend, but I think it will include increasing his formula tolerance and making sure he is sitting in his chair as much as possible. I would love for him to lose the nasal cannula this weekend, but we will see. I think regardless of the plan, it is going to be an active weekend. He is acting much more like himself with lots of movement in the bed and just wanting someone sitting next to him. Absolutely buddy, anything you want!  It's crazy to think how much can change in just one short week. 

Baby Steps

 It's been 4 days since putting the breathing tube back in and it was a slow and steady weekend. They didn't do a whole lot, but rather kept him nice and comfortable as they worked to break up the junk in his lungs. I was able to go home for the night on Saturday to spend time with the middle and little, who really are proving to be the real troopers in all this. The plan has been to extubate this morning and we were able to stick to that plan. They started coming off of his sedation meds to make sure he would be awake enough to do his own breathing (with the assistance of the BiPAP machine). Once the meds officially wore off and he was awake, he was awake and he was pissed. It took two nurses and myself to hold him steady until the doctor could get there and officially move forward with extubation. The entire process took a good 45 minutes and it was extremely stressful, much like the last time. I try really, really hard to hold it together, but these type of days really test me. Everything all comes out at once. I know he is scared, I know he is in pain, I know he is confused and in the middle of all that, I know he is just trying to breathe. They eventually were able to give him some extra Morphine to settle him down and to calm his breathing. He is resting comfortably right now, but they are keeping a very close eye on him and trying to be very aggressive in clearing his lungs and doing everything possible to not have to put the breathing tube back in. In addition to the breathing, they are also monitoring his chest tube output. Right now he has two chest tubes surgically placed that are draining excess fluid stemming from the surgery. The hope would be that they would have stopped draining by now, but his continue to drain. This was also a problem we dealt with extensively after his first surgery as well. The hope is that the meds he is on to assist will clearing the lungs will also work to dry him up and reduce the drainage from the chest tubes. They plan to do an echo and an ultrasound today just to make sure they aren't missing anything. It would be really nice if we could make some good progress and have Brody in a better place by the weekend to allow the other two to at least FaceTime him. We don't want them seeing their brother the way he is right now and worry them even more, but I also think not seeing him at all, also worries them. Hopefully we are on the right path forward, but I think the next 12-24 hours are going to be huge for his progress. 

And So It Begins

 Night 1 Post Op went better than I anticipated. This was the first time I have been able to stay with him the night after heart surgery. The other two times he was a baby in the baby pod of the old CVICU where you were lucky if you had a chair bedside some days. The new CVICU has individual rooms for each patient with a parent bed. The evening was spent getting him all settled. The plan for the night was to monitor his vitals and if things looked good we would work on waking him up a bit more and take the breathing tube out around midnight. They came in around 11 and said they were good and were ready to take the tube out. It seemed like all at once we had about 5 nurses, 2 doctors and 2 respiratory therapists in the room swarming around. It was an intense 30 minutes of taking the tube out and figuring out the best option for oxygen support. We tried high flow nasal cannula and then opted to switch to CPAP. Once things were settled, Brody would sleep, but any time he would start to wake, he would get super agitated and his oxygen levels would drop. He was on a continuous dose of morphine, but if he seemed in pain or unsettled the nurse could give an extra dose every 10 minutes. I think he ended up needing about 4 extra doses over night. It stayed relatively quiet and I got more rest than I expected, but woke up every couple of hours when he would start stirring and whimpering, but was able to go back to sleep when he would get his extra morphine. 

This morning has played out much differently. Brody has been super irritated and his oxygen numbers have been hanging out in the 80's. They came in and switched him to BiPAP, but that wasn't helpful. The question has been is it the BiPAP, pain or irritability that is causing him to be so restless. I think it's a combination of the three. Overnight Brody had gotten the 4 extra doses of morphine. From the time the day nurse came on until about 9 am, she had already had to give him 8 extra doses or morphine with no real success. 

One of the ICU doctor's was talking to me and that he was hoping to try some things and keep the breathing tube from having to go back in, but that it could be a possibility. Within about 5 minutes, there was about 15 different doctors and nurses swarming around and they made the decision that they would put him back on the breathing tube. I wasn't really surprised as his oxygen is always an issue after procedures and I am used to proceeding very cautiously with "the plan," because nothing ever goes as planned. 

I had to step out of the room why they got him re-intubated and waited for them to finish. It is so incredibly hard to watch so many people flock to his room and rush around. I am good at staying calm in the moment, but dang. After the tube was in they told me that he had some very thick secretions and he never would have been able to get them up on his own, so putting the tube back in was definitely the right move. Currently, even with the tube in, we are having issues keeping his oxygen up. They are giving him a couple of different treatments through the ventilator, but they are not getting much up. The plan, for now, is to keep working through these treatments and see if we can get his oxygen more stable. Once they can get better oxygen numbers, they will do a Bronchial scope on him and go in with a camera to deliver these treatments directly into the lungs to assist with breaking up whatever is in there. 

It is proving to be an intense day of hurry up and wait. I will say though, I absolutely love his team. It really helps to make the difficult things a little bit easier. 

Surgery Day

 We made it to surgery day!

The day before surgery went super smooth (mostly). I got a call from the kid's school that Colby had thrown up and needed to be picked up. Slightly panicked because if he had some sort of bug, that was the last thing Brody needed. I told Colby he was going to need to stay away from his brother and hang out in his room. Once he got home he said he was hungry and made himself two flap sticks and then stood at the counter eating Oreos. His appetite and behavior the rest of the evening reassured me that he did not have a bug, but we still kept our distance. At one point, I went and checked on him and he was putting on his inflatable halloween costume from a couple of years ago. I smiled at my "sick" kid and when he saw me he told me he had a great idea. He said he was putting the costume on, so he could give Brody a hug before he went for surgery. That kid makes my Mamma heart smile so much. When it was time to go to bed, I told Colby to come sanitize his hands and put a mask on and let him hug his brother before bed. Of course, Zoey needed a mask too so she could do the same. Everyone went to bed with no tears or meltdowns. I think the kids got out all of their built up emotions before the last attempted surgery which really helped it go better this go around. Since Colby threw up at school, he had to stay home the next day, so he got to spend the day with his Auntie. All of it was probably for the best because he just got to just relax with her, was treated with some Olive Garden for lunch and got to play with his cousin that afternoon. 

We had to be at the hospital at 6:30 am and Brody woke up in a great mood. He was "talking" and clapping and helped put our nerves at ease. Once we got to the pre-op room, his demeanor changed a little and he became a little more reserved when we put him in the bed. We signed the rest of our consents and everything moved pretty quick. They gave Brody a medicine to help him relax, but I think it made him feel pretty out of it and disoriented. I was sitting on the side of the bed next to him and once they gave him the medicine, he was trying to crawl in my lap. We gave it about 5 minutes, gave hugs and kisses and then made our way to the waiting room. It was a long day, but we received updates every two hours which helped. 

• Update 1: They just rolled him on back. They gave him some meds to relax him and he was trying to climb into my arms for snuggles. He did great. They said our first real update won’t be until closer to 10.

• Update 2: They have all his lines placed and breathing tube in. Surgeon is working his way to the heart.

• Update 3: They have officially made it to the heart and have transitioned him to Bypass. Time for the surgeon to do his thing!

• Update 4: Surgery is progressing as planned. Surgeon is currently working on replacing the donor valve.

• Update 5: Operation is done and he is off bypass! They are going to start working on closing him up and the next update should be from the surgeon.

• Update 6: Just talked to the surgeon and he said everything went great and as planned. He replaced the donor valve, repaired the tricuspid valve and put a patch on the aorta to expand it. They are getting him settled now and said if things continue to go well they might start trying to wake him up tonight and take the breathing tube out. Should be able to get to him in the next 30-45 min.

• Update 7: Finally made it back to our boy!!! (7 has always been our family’s special number. I love that update 7 is when we are reunited).

Overall the day went smooth and the surgeon was very happy with the results and what he was able to do. Now, will be the real fun as we take a ride on the roller coaster called recovery.

Huge shout out to everyone who sent text messages and reached out through social media. All of the support for our family is always appreciated and means more than we could ever express. Extra big shout out to Auntie, Grandma and PawPaw for all the help with the middle and little. This our first go at heart surgery and an extended hospital stay while having two other kids at home and there is a lot of things to coordinate!

Feeling Good!

Something Seems Up

Post Surgery. I've never taken pictures of him after surgery because those images are always burned in my brain, and not something I really want a picture of.