Well, it has been 19 1/2 days since we lost our little boy. I think that now the shock is just beginning to wear off and it seems as though this isn't just a terrible nightmare. Danny is back at work, I am starting work next week, each of these steps makes it all seem more real. I know that we are not the only ones who have lost a child, but that sure doesn't make it any easier. One week from tomorrow is Bridger's first birthday, he was so close. I guess I will keep trying to hold on to this fog as long as I can, but who knows how long that can last.

Just a quick clarification

I need to clear one thing up. The heart walk that we are participating in for Bridger is put on by Intermountain Healing Hearts, not American Heart Association, although they are both on the same day. To register for the heart walk for Bridger go to intermountainhealinghearts.org at the end of the walk there will be a memorial service for Bridger, as well as other angels. If you have any questions let me know.

Thank you!

We would like to extend all of our thanks to everyone to has been such an amazing support to us. It is wonderful to know how loved Bridger is. We are very appreciative for all of the beautiful flowers and all of the donations made in memory of Bridger. I will continue to use this blog to document all of the activities that we participate in for Bridger. We would like to thank my uncle Lee for giving us the idea of a tree for the festival of trees. Danny and I are going to decorate one each year to donate, we will also participate in the heart walk this September in Bridger's name. I know it won't be as exciting, but we will still keep posting pictures of these events. Thank you again for everything. I hope that we can live up to our son's impact and strength.

Bridger's Obituary

Bridger James Smith 09/04/2008~08/08/2009 Bridger was gratefully received by Staci and Danny Smith on September 4, 2008 in Salt Lake City. From the moment Bridger entered this world, he had a way of winning the hearts of all those around him. From birth to the end of his time here on earth, Bridger fought many battles and until the morning of August 8, 2009, he was able to persevere with a smile. It was while in Texas being evaluated for a heart-lung transplant that Bridger faced his final battle in this world. Bridger is a miracle to his parents, to the medical world and to all those who had the privilege of knowing him. We will forever miss our beautiful, blue eyed boy and look forward to the moment we see his smiling face again. We would like to give our love and gratitude to all of our family at Primary Children's, because of your love for our son and dedication in your work, we had an amazing 11 months and four days with Bridger. Bridger we are all better for knowing you. Your mom and dad love you more than you will ever know! Thank you for choosing us! Services will be held at Jenkins-Soffe Mortuary at 11:00 a.m. on Saturday, August 15, 2009, 4760 South State Street, Murray, Utah, with viewings on Friday at the mortuary from 6-8 p.m. and Saturday 10-10:45 a.m. prior to the service. In lieu of flowers, a foundation has been arranged in Bridger's name at Primary Children's Medical Center. All funds raised will go toward sleep chairs in the Pediatric ICU. Online condolences at www.jenkins-soffe.com

Coming home

We are bringing our sweet angel, Bridger, home to Utah this morning and I am terrified. As each moment passes, it brings me one step closer to the reality. So far everything has been a big haze with little moments of recognition that Bridger is not in this world anymore, but I fear that walking into our house without him will really smack me in the face..........I don't know what else to say.............Bridger I love you!

The Services

Danny and I want to thank all of you for your endless prayers and support. We love our little boy more than anything and though we have always known this would come, we secretly hoped that he could continue to perform miracles. I think that if it were up to his soul, he would still be here, amazing us at every turn. Unfortunately his body could no longer keep up. I was with him when it happened and was able to hold him for hours afterward until Danny arrived in Texas. We do not regret giving Bridger every chance at life, but my heart is broken that he was not cared for by his family at Primary's in his last moments of life. Even the short time we were in Texas, he had the staff hooked. More than one person came tearfully to our room after he passed. He is just so amazing. The funeral services will be this Saturday, August 15, 2009 @ 11:00am at Jenkins-Soffe Funeral Home (4760 S. State Street) with a viewing at 10:00 that morning as well as Friday evening from 6:00-8:00pm. Danny and I are so grateful to all those who have been a part of Bridger's life, as well as ours. We are especially touched by all of our family at Primary who had a part in helping our boy be so happy, even living in a hospital.

We Love You Bridger

After his nearly year long battle, Bridger has decided to return home. Our special little guy gave us so much to be thankful for and proud of during his short time on Earth. Bridger will be sorely missed and always loved by all of his cousins, aunts and uncles, grandparents, friends and everyone else who had the pleasure of meeting this little fighter. We will be forever grateful for the time we were able to spend with Bridger, even if it was way too short. Our thoughts and prayers go out to Staci and Danny.

Onward and upward

The titrations of Bridger's PRAs are back. There is one antibody they would need to avoid in a donor, but otherwise we are okay. The evaluation for transplant is kind of like a scavenger hunt, you have to research and evaluate one thing before you can move on to the next. Next for us is a chest CT scan on Monday to see what Bridger's vessels look like. He will also have more blood drawn on Monday for the heart end of things, these results could take up to a week. We got moved into the progressive care unit last night. Bridger and I each have our own beds and even our own bathroom and shower, there is a big window that looks out on to the city and an actual door to close the noise out. As long as Bridger stays stable for Bridger, we will stay here. Until Monday we just need to sit tight and do our best to prevent infection or any cardiac/pulmonary crisis.

A lesson in biology

Bridger is standing on the floor and holding onto the chair with physical therapy.

Today we will have a lesson in biology. Bridger's PRA levels are back. There are two classes, class I and class II. If the class I is greater than 10%, they will not list him for transplant. Bridger's class I is 0%, so we are home free there. His class II is 15%, which could be worse, and it is not a deal-breaker for transplant. So now they will further analyze his class II PRAs to see exactly what they are, and for now we continue on with the evaluation. On Monday he will be schedules to have a chest CT scan to look at all of his vessels and he needs a developmental evaluation. We are hopefully moving to the progressive care unit today, where Bridger will not have to share his bed with me and we will have a little more room to walk around. As for our pictures above, Bridger has been working with physical and occupational therapy the last couple of days. He knows that they are new and is trying to get away with fussing at them so they will leave, he has been with his old PT and OT for so long, they knew how far to push him without really making him angry, but this team has to start from scratch. Bridger is sure giving them a run for their money. When I hear more on the PRAs I will post, but for now we are still a go on the evaluation.

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.