Okay

Big morning already. Our lung transplant doctor came by, as well as the heart transplant doctor this morning. Their two teams met with the surgeons early this morning about Bridger. The main surgeon came by last night to talk to me and take a look at Bridger. The general consensus is that this is a very high risk procedure, and the challenges that we would face would be many. The pulmonologist is optimistic, the surgeon is on the fence and the cardiologist is much less optimistic. Throughout this journey, Danny and I have always been clear about our wishes for Bridger. If it is something that can offer Bridger and improved quality of life,then we would like to be able to offer that to him. The problem is that we need caregivers who are willing to provide that care and are able to trust us in doing what is right for our child, not what they think they would do for their own. When it really comes down to it, you will never know what you would do until you are in that position. Okay, I'll get off my soapbox now. Anyway, the big thing today is waiting for his PRA level to come back, if it is to high, then he will not be eligible for transplant because his antibodies would attack the new organs. If this is the case, we will be coming home as soon as possible. If they are low enough, then we will proceed to further testing. As for Bridger, he is having a good day so far. He is talking to all of the physicians and nurses, if they are not paying attention to him, he just talks louder and louder until they can't help but notice and then he just laughs at them. I think it is pretty cute. We are off isolation now, no more masks and gowns. They always test for viruses whenever there is a change in condition and along with this test comes isolation precautions. So at least now, Bridger can see everyone's faces and smiles. I'll let you know when we hear about the PRA.

Happy 11 months old!

Bridger is 11 months old today! Our little man is growing up. Bridger slept pretty well last night and was up bright and early today. Dr. Mallory (head of lung transplant) came in this morning and said that since Bridger is AB+ he is a universal recipient for his organs. That is great news because he will be able to receive a heart and lungs from any donor, not just specific blood types. He started working with physical therapy this morning and did well, he has been standing more and more. Bridger now has 7 teeth that have come through his little mouth and seems to get taller every day. The teams are meeting about Bridger tomorrow morning and we should have some more definitive answers after that.

A better day today

We made it through the weekend and had a better day today. Bridger was able to have a break from his CPAP mask today and did awesome, so he is able to stay on high flow as long as he continues to look good. We met Dr. Mallory today, he is very assertive, which you all know I like. He came and asked how the weekend was, I told him my concerns about the equipment and different things and immediately he had me call Primary's to find out what they used on Bridger. Before I was even off the phone, he was looking things up and having the department heads order the supplies so that Bridger could have what he is used to. That immediately lifted my spirits. Bridger has been sitting up again today and flirting with the staff, so I know he is feeling better. He has also taken quite an interest in standing today, we have always tried, but he never liked putting weight on his feet until now. It is kind of fun, everytime I pick him up, he just wants to stand. Hopefully today will be sign of good things to come. The lung transplant team ordered his bloodwork for the evaluation today, so he will be giving a lot of blood and will probably need a blood transfusion this week. So far that is all that I know. We miss you all!

time for a change

When we first got here, Bridger looked pretty good and the doctors were pleased with everything. I am glad they saw that first because today he has changed, quickly, as usual. Last night is when it started, he just didn't sleep well, and couldn't get comfortable. We couldn't keep his oxygen levels up and his heart was increasing. This morning it all just continued, his oxygen sats kept creeping lower and his heart rate was up to 190. All of the equipment here is different from ours, I asked for nasal CPAP, but they only have that for small infants-we all know Bridger is not small. We tried it but he was too big and it couldn't keep his pressures up. We ended up changing to a CPAP mask that covers his entire nose. That is what he is on now, so far he is handling that okay, with some ativan. They are starting a continuous drip of lasix to help keep fluid off, so hopefully that will help and he can go back to the nasal cannula oxygen. His heart rate is still up, but his sats are better. I guess we will see.

24

We made it through our first 24 hours here at Texas Children's. Everyone has been very nice here, things are just very different. Bridger is already making friends with his sweet smile and his professional plastic tambourine music, one nurse asked if he was a rock star :). The plan for now is just for the team to get to know him better, because his health history is so complex that may take some time. Hopefully this week, the heart transplant team and lung transplant team will meet and discuss him in detail to map out a plan. We will let you know as things progress.

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.