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.

Seriously?

Yesterday morning I started having a rumbly tummy. It became more and more frequent and by 1:00pm I was throwing up. Things only got worse, so Danny came and picked me up and took me to the doctor where I tested positive for Influenza A. This is blog is not about me, however it affects Bridger in the fact that I am now quarantined from him until I have been without symptoms for 24 hours. We can only hope that he does not get sick too. He did roll all the way over and back today, all by himself so that is good to hear, I am just sad that I missed it. Stanford called today to say that they have Bridger's paperwork and have begun to look through it, hopefully we can get an idea of what they are thinking sometime this week.

Okay, let's get our game faces on!

Sorry, I had every intention of posting yesterday, but as you know things come up. Bridger was extubated on Saturday and did much better this time. He was extubated to high-flow oxygen this time instead of CPAP, so he was less angry which always helps. He has stayed extubated so far...he didn't really sleep on Saturday because he was so happy to not have the breathing tube in. We also did not sleep Saturday night, Bridger was very restless and uncomfortable, I was concerned that his heart was struggling again (lack of sleep is usually his first sign). Sunday morning, we talked to the doctors who were also concerned and although it is usually heart or lung issues, they wanted to rule out regular old baby issues first. So his ears were fine, then they checked his throat and it was full of blisters. They said he has hand/foot/mouth disease, I just started laughing because finally something that regular babies get. Of course I don't want him to have anything, but of our options this is a better alternative. Anyway, Bridger is returning to his usual self as each moment passes. Yesterday he was throwing his toys out of the crib and laughing as I picked them up and washed them over and over. Right now he is taking a much needed, unsedated morning nap. We are checking in with Stanford to see if they have received our paperwork and I am looking into other facilities in case Stanford declines. Since we are still unable to determine what caused Bridger to crash last week, I believe more and more that as always Bridger is giving us a sign of what he wants. He is telling us to get going on the transplant end because he can hold out, but not for much longer. We have always tried to make our decisions in the best interest of Bridger, but he usually makes the decisions for us. This will be a long hard road, but if our son can do it, so can we!

A quiet couple of days

Yesterday there were no changes made for Bridger. We just wanted to have a quiet day where Bridger could adjust to the changes from this week and maybe get some rest. This morning when I woke up he was more himself than I have seen all week. He was playing with his toys and just hanging out. If he didn't have his breathing tube in, I am sure he would have been chatting up a storm. When I got up I gave him his tambourine which he immediately started tapping on his breathing tube. It was just what I needed to start my day! So on a side note I have not yet learned how to add other heart family blogs to my blog, this other amazing heart mom has them on her blog. It is: whatscookinatthecooks.blogspot.com, you can look it up and connect to other heart families who have been through similar experiences. This mom, Hilary, is so sweet, she came to visit me the other day and share a little of her journey with me. Her son was here getting a heart transplant when we were here in September for Bridger's very first surgery. So take a look if you would like. I have been able to hold Bridger the last two days, which it is no secret that I love holding him. Let's have a great day!