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!

A new day

Yesterday they tried to extubate Bridger, he was on CPAP for 2 1/2 hours and was really struggling. He was re-intubated and it took a bit for him to relax, but finally he was able to. We are still not quite sure what happened yesterday or even on Monday. Today the plan is just to give him a good rest and see how it goes from there. Yesterday all of our paperwork was sent off to Stanford, so we will see how this next few days to week goes and if Stanford agrees that it is worth evaluating him, then we will see if Bridger feels like he is up for this challenge.

New plans!

Today has been a very stressful and emotional day. It looks as though we have reached the end of our rope in terms of options for Bridger's medical treatment. Today Danny and I have actively made our request to have Bridger reviewed as a candidate for heart/lung transplant. We have chosen Lucille Packard @ Stanford in California. The head surgeon there was the one who performed the first successful heart/lung transplant in 1985. This is also the closest location for Danny to get to us in case of emergency and the Ronald Mcdonald house there had a specific wing for us to live after the transplant. This is a big decision for us, but we feel that our beautiful son had not yet told us that he is ready for us to just take him home and let him die, so we are going to give him this opportunity to hopefully do the things that babies and toddlers should be able to do. Our paperwork is being submitted and if Bridger is a candidate he and I will be moving to California in the very near future. Please keep your thoughts and prayers with our sweet little man.

Another scare!

We are back in the PICU, yesterday as we were getting ready to come to our cardiology appointment, Bridger turned blue again. He was have a terrible struggle trying to breathe, so 911 was called and off we went. We got to Primary's just in time where Bridger was intubated and moved back into the ICU. It took some time, but they were able to get him stable (as stable as Bridger can be) he is sedated, but at least he is not as stressed today. He is getting a blood transfusion right now, which he always likes, and we are trying to dry out his lungs. So for now it is just the wait and see game again.

Home again!

Sorry I am a little behind again on posting. We are home! It always takes a few days to get settled again, but we are loving it. Bridger is now home on 3 different ICU- only pieces of equipment, but we are so grateful because otherwise we could not be home. So far he seems to be doing okay, usually our first few days home he spends catching up on sleep which is good for him. It is too hot right now for us to go walking outside, but maybe when I get a little more situated we can go at the mall before it opens. We hope you are all doing well. We miss you and love you!