First family outing

This morning we went with the Hope Kids to see Night at the Museum: the Smithsonian. It was really nice that Danny, Bridger and I were all able to go together, but it was also overwhelming to be around so many people for the first time ever. They had two different theaters just for the Hope Kids, and we sat on the edge so that we were close to all of Bridger's equipment and I could get out with him if I needed to. The movie was funny and Bridger didn't even mind the noise. We have been home 24 days now and each has been heavenly. We check back in to Primary on Friday for cath lab, and we will see how things go from there.

Our first outing with the Hope Kids

We are members of an organization called the Hope Kids. This is a group that works to provide hope to children with life-threatening illnesses and their families. Hope Kids has different events going that members can attend and not be worried about crowds or germs. So on Wednesday this week, we got to go to the Living Planet Aquarium. There were only other Hope Kids there, so I was able to take Bridger and participate in something that most can do at anytime, but we cannot because we can't risk Bridger even catching a cold. Needless to say it was great! We were only there for about twenty minutes, but that was enough and when we were done Bridger was pooped. Next week we get to go see Night at the Museum at Jordan Commons, before the theater opens. Yesterday we had to hold off on our daily walks because Bridger was having more trouble than usual breathing. So we stayed in and turned the high-flow up a bit to give a little extra support. He looks a little better today, so we will just keep an eye on it. We have been home longer this time than we have been in the last five months, so we are just trying to enjoy every moment.

It's been a while

Sorry it has been so long since our last post. Bridger had a cardiology appointment on Monday again, where most everything was unchanged (not worse, so that is good). As far as what we have been doing these last two weeks, yes I said last two weeks! We try and go for a little walk outside every morning and every night so that Bridger can enjoy some outside air, and trees, and flowers. We work on his different exercises between naps, read stories and play. These things probably don't sound very exciting, but to us they are a dream come true! We also want to thank everyone who bought bracelets for Bridger, we never knew that so many were watching over him- THANK YOU!

Doing our best to stay home

We had a little spook a couple of nights ago. On Sunday night Bridger couldn't sleep and was becoming more and more restless. He had an appointment with his cardiologist on Monday and when they checked his heart it was struggling again. So the doctor made some medication changes and increased his oxygen use to see if that may help keep us out of the hospital a little longer. That night at home, Bridger started turning gray, and his lips and nose were going blue. I was scared that we would be taking another ambulance ride back to Primary's, but Bridger was able to get through it and we were able to stay home a bit longer. So we are just taking it moment by moment, supporting him in whatever way we can to be able to safely keep it at home.

Here is Bridger in some of his big boy clothes

HOME AGAIN!

We're home again! We were discharged from the hospital on Wednesday afternoon with high-flow oxygen and IV milrinone (the med that is helping his heart and lung function). So far Bridger is doing well. This morning he was vomiting before his blood draw, so the also tested his level of heart failure which was increased from Wednesday, but still it has been worse. So he sees his cardiologist on Monday where they will check his blood again. So we are hoping to have a nice quiet weekend. I'll keep you posted and try to post some new pictures this weekend.

Bridger's Heart Heroes Wristbands

"Bridger's Heart Heroes"

Bridger wristbands are now available! You can buy one (or more) of these bright red wristbands for $5 each and become one of "Bridger's Heart Heroes". If interested in a great cause, please contact Maura Smith at 801-633-8817 or by email at jomakamcki@digis.net to purchase. Cash or check will be accepted (make checks payable to Danny or Staci Smith). Let's all show our support for Bridger's recovery and for CHD awareness. Thank you to everyone for your continued thoughts and prayers for Danny, Staci and Bridger.

A quiet weekend

Nothing much happened this weekend, the doctors just made some adjustments to Bridger's medications and oxygen. Otherwise we just kind of hung out. Yesterday, Bridger was a little unhappy due to the two upper teeth and two lower teeth that are trying to break through, but today he seems to feel a little better. He still has a couple more days of his IV antibiotics and they are working on getting his blood thinner at just the right level. He is still wearing his big boy clothes and looking so cute!

Big boy clothes

Today I dressed Bridger in clothes (usually he is just in a diaper because of all the lines coming off of him) I am starting to work on his temperature regulation again. Since he is always naked in the hospital, his body regulates its temp without clothes. So when I do get him dressed, he overheats easily. So he is getting dressed now, I turn the thermostat down and slowly turn it back up as his body adjusts. He looked so cute, he had shorts and a t-shirt and cute flip-flops. I'll post the pictures when I get them downloaded. Otherwise a pretty quiet day, they adjusted Bridger's oxygen a bit, changed one of his medications from IV to go in his g-tube, and we got to take a nap together on a playmat on the floor. Not too bad. So just taking things slow- which is fine by us!