Happy 24th!!!

Bridger had a pretty good day yesterday. He might be working on another infection, but he is still in good spirits considering. Last night our nurse took us out on the terrace to watch the fireworks! It was great, yet another holiday we were able to celebrate as a family.

Turns out we weren't the only ones with this idea and another mom brought glow necklaces for all of the patients. Bridger didn't know quite what to think. He wasn't that interested in the fireworks either, but more in the kids he saw around us. But it was still fun.

We have been able to take a few short walks with our nurse. Bridger just likes to kick back and enjoy the ride. We have interest from Texas Children's and Pittsburgh Children's to have us go to their facility for evaluation and St. Louis Children's has said "yes" they are willing to evaluate Bridger. We are hoping to have something lined up sometime this week. Until then we are going to keep going for short walks-if Bridger is up to it and maybe even go home for a couple of days before we make our move. Where ever we go the evaluation can take up to a month before they say whether or not they will put him on the transplant list, this means that no matter what Bridger and I will be gone for a while. I guess this is one way for us to see a new city, even if it is just looking out of our hospital window. Always a new adventure!

Extubation!!!!

Bridger went to surgery yesterday, where they were able to place a central line in his right facial vein. You can't see any part of it except where it comes out of the body in his chest. I think this will be much better where he won't have anything impeding his arms or legs. This morning his breathing tube was taken out and he was placed on high flow oxygen (this is what we have at home). Also this morning the cardiologist in the ICU informed us that there are four other centers to send Bridger's paperwork to for heart-lung transplant. So the ones on the list are St. Louis, Texas Children's, Pittsburgh, Philadelphia, Nationwide children's, and Miami. Here's hoping that at least one of them will be able to see more than just Bridger's chart, maybe they will be able to understand his strength and resiliency. After Bridger was extubated, I was able to pick him up all by myself (when he is intubated, it takes 3 people to get him in my arms) what a gift to be able to pick him up again whenever I want! Today has, so far, been a great day!

No go on the PICC

We went down to the specials lab this morning to have a PICC line placed in Bridger's arm so that the infected line in his leg could be removed. The doctor was able to get into the vessels of each arm, but unable to thread the catheter all the way to his heart. Not exactly what we were shooting for this morning, but they were able to switch out his g-tube for a g-j-tube(this feeds into his intestine, not the stomach). That will be helpful because Bridger has been vomiting frequently, so he is not absorbing his calories or his medications as he should be. Since we were unable to get a PICC line, Bridger will go to the OR tomorrow to see if they can surgically place another central line. Keep your fingers crossed.

What a relief!

Every time Bridger gets intubated and paralyzed, we always wonder if we will ever get to see his beautiful blue eyes or his funny personality again. This time was no different, but today, they decided to give Bridger a trial off of the paralytic. I was very nervous, but he tolerated it well. The first thing he went for was opening his eyes and they are just as amazing as I remembered. He went on for about 20 minutes with kind of spastic, but not stressed movements in his arms and legs. I imagine coming off of a paralytic medicine to be like trying to get your movement back after your leg falls asleep. With all of that strange tingly, itchy sensation. I was worried that he might get stressed, but the next thing I knew, he was handing me his foot so that I could kiss it (this is one of his favorite things to have the nurses do). After that I knew my baby was back in action. He continued to play for 2 hours after that, making up for lost time I guess. I asked our nurse to give him a little sedation so that he wouldn't over do it and have to have the paralytic turned back on. Needless to say, today has so far been a great day! Bridger is already back to his old mischief, even with his breathing tube still in.

He has his angry eyes on

Bridger is still paralyzed and he is not happy about it (I wouldn't be either). Over time his body begins to adapt to the paralytic, he seems to muster up all of his energy and get very angry inside. This, of course, is not easy on his body and it shows. I am hoping today that we may be able to lift the paralytic some, and increase his sedation so that he doesn't feel as trapped. Yesterday the bacteria causing his infection was identified, it is a multi-resistant organism, so we had to change his antibiotics again. He also got blood yesterday, which we all know, he loves. I don't really expect too many changes today, but you never know.

I moved back in last night!

Yesterday while I was visiting the PICU, one of the nurse managers made a deal with me that if I could sleep at home one more night and catch up on my rest, they would try and get Bridger moved to a room where I could have my sleep chair back. I said okay because Bridger was intubated and very sedated anyway. As I was getting ready to go bed last night, we got a call from the doctor asking us to clarify our advanced directives for Bridger, this is not a decision to be made over the phone and by someone else's assessment of him. So I asked if I could please come back last night and not have to wait until the morning? Our doctor said yes and so here I am. Shortly after I got back to the hospital Bridger's blood culture showed positive for infection. This is good and bad, we don't want him to be septic, but at least it is a reason other than just his heart for his quick decline. They had already started antibiotics yesterday morning, which is good, now we just have to see if Bridger is able to work through yet another infection. The infectious disease team is being consulted again because of his chronic hospitalizations to see if he needs preventative antibiotics or a longer course of antibiotics. He also had 2 echos this morning, one from the inside of his throat and one from his chest. I haven't heard the official results yet, but there were no masses noted in the heart, that is a relief. We have already had a big morning, I hope we can just keep it quiet for the rest of the day. Maybe we will get our new room today if Bridger feels up to a move.

A lot on our plate

The day started out with a call that Bridger had a quiet night. My next call was that his white count was increased (sign of infection) and his BNP was increased (sign of heart failure), but that he was still doing fine. I asked if I could come see him today, but they were still a little leery of that idea and asked if I could wait until tomorrow. The next phone call I received was from the doctor saying that Bridger had taken a turn and would probably have to be reintubated (put the breathing tube back in), I asked if I could please come see him and she asked to have the chance to intubate and stabilize him before answering that question. Finally I got a phone call saying that I could come and that someone would meet me outside with a gown and mask that I could put on before going into the hospital. After 3 long days I finally got to see my baby boy, I have never been apart from him for that long. He was sedated and paralyzed, but they said he was looking better than he had just before I arrived. I was able to sit with him for a few hours. While I was there, I received the news that Stanford declined evaluating Bridger for transplant, they said he is higher risk because of his multiple heart surgeries. So we are sending his chart to St. Louis and Baylor (the only two other facilities in the U.S. that perform pediatric heart/lung). We have some things to work out in the mean time, Bridger needs to stabilize and extubate, we are going to try and replace his G-tube with a G-J-tube(one that feeds into the intestine, not the stomach) and also get our bearings back. Tomorrow they are going to let me move back into the PICU, it isn't standard protocol, but if we are running out of time I can not spend anymore time away from Bridger than I have to. So we will play a little more of the waiting game for the next few days.