We're here

Well, we made it to Houston last night. The "kangaroo crew" arrived at Primary's just after 4pm and we got to Texas Children's about 10pm local time. This is the plane we flew on, it had just enough room for Bridger's stretcher, the doctor, the nurse, respiratory therapist and me. Bridger was strapped into a makeshift carseat on a stretcher, I was worried that he would get stressed out being strapped in for so long, but he did great! Half way through the flight I was able to hold him for a bit, but he was too busy playing with the medical team to be held down by mom. Flying in, we were able to see the medical center, it is as big as Salt Lake-just the medical center! It is all very overwhelming. One of the big reasons we chose Texas was that they said I could sleep at the bedside, as I have been doing at Primary's. When we arrived, however, they said that I would have to sleep in the waiting room. After all that had happened yesterday, this about pushed me over the edge. I explained our situation, and how in the last 11 months I had only been away a handful of times, and in the end we worked it out. I had to sign a release to let Bridger sleep in a big bed with me, but we did it. I am ordering a sleep cot that I can tuck away during the day, so that he can sleep in a crib, but until it gets here, Bridger is stuck sharing with me. This morning, I went to start some laundry on the 16th floor and grabbed something to eat, but I got lost on my way back to the PICU. This hospital is 22 floors in itself and there are bridges to all of the other hospitals as well. I am not sure what I am doing, but I guess I'll figure it out. A couple of the benefits here are that I can eat in the room with Bridger and I don't have to leave for shift change. So even though, we are very far from all of our support and love at least Bridger and I can be together other than when I have to shower, get food or do laundry. We miss you all so much. This is the scariest thing that Danny and I have ever had to do, but when I get past my fear, I still fell that this is right for our son.

TEXAS- here we come!

We got the call this morning, the critical care team from Texas Children's is flying in to pick us up tomorrow morning. The evaluation can take up to a month, but hopefully at the end of that time, Bridger will be able to be listed.

After 11 months of life in and out of the PICU, the staff decided that Bridger is part of their family. Yesterday, we were able to go down to security and have his very own badge made.

Let's catch up....

We have been so busy talking about the boring stuff, let's catch up on all of the fun things that have been going on this week..... One of our nurse practitioners is also on the life flight team, last night she took us up to the roof to watch the sunset and while we were there a helicopter came in. We were able to check it out, they are quite small, there is only enough room for the patient, the pilot and two nurses. Its a good thing that this isn't what we are taking to our new destination. P.S.--Daddy will be so jealous!

The sunset was beautiful and it was even quite nice outside.

On Monday, a therapy dog came to see Bridger, her name was Rosie. She is not the same as our boys at home, but we sure enjoyed her company.

Since Bridger had his central line taken out of his leg last week and placed in his chest, he was able to sit his lower half in the bathtub. At first, he wasn't quite sure what to think, but then he decided it wasn't so bad.

Texas?

I spoke with the coordinator from Texas Children's this afternoon and due to some communication issues, they were unable to setup transport for tomorrow. Now, the plan is for their head physician to talk to our head physician in the morning and unless something comes up we will either fly to Texas on Thursday or else we will go home tomorrow for a few days and check back in Sunday to fly out on Monday. I'll let you know what I find out tomorrow.

Webcammin'

For months my sister has been asking me to setup a webcam so that she can see Bridger from wherever she is living. I kept postponing it, but finally with the possibility of moving coming our way we setup skype videocalling. Yesterday we called my sister back east, one of our nurses who is in New York and some of the grandparents. It was so fun, Bridger was able to see them all and they could see him too. Today I talked to Texas Children's who said that there are some details to work out, but we will know tomorrow if they are coming to pick us up Wednesday morning. It was a lot to take in, but we are grateful things are hopefully moving along. I'll let you know if we need to get out our cowboy hats! :)

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.

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!