Echo results

Sorry I didn't post sooner, we got the echo results Monday but I didn't talk to the doctors about their plans until yesterday. On Bridger's echo from Monday it showed that the medicine he was started on last week did not make any improvement in his lung pressures. So yesterday when I spoke with two of the cardiologists, they thought it was best to try one or two more oral meds to see if anything changes, and if not then we will try an IV medication to see if that helps. The downside to the IV med is that it can relax the lungs enough that they are not able to protect themselves from taking on fluid, so that would have to be monitored very closely. On Friday I will take Bridger back up for some more blood tests and probably next week he will start a different medication to help his lungs and heart.

Home again!

Bridger was started on a new medication Friday night. On Saturday morning, our pulmonary hypertension specialist called the hospital and said that if Bridger's blood pressure was stable then we could go home Saturday and come back in Monday for testing to see if the medication was helping. That sounded great to us! And since we have our own ICU at home we can pretty much do all of the same things without being at the PICU. So we came home Saturday afternoon, and we will go back in tommorrow to see if this medicine has helped.

Cath lab

Well Bridger made it through cath lab. There were no changes in his pulmonary pressures from two months ago, so they tested some medications again. Bridger also had a CT scan of his lungs to check for any other pulmonary disease that might be causing increased pressures, but there was none. He does have an obstructed pulmonary vein in his left lower lung that is contributing to his struggles. So the plan for now is to try one of the new medicines to see if it helps, they will do another echo in a day or two and we will go from there. So this isn't the quick overnighter we were hoping for, but we want what is best for Bridger.

Just an overnighter

We got to come back home after just one night. Bridger had a blood transfusion and a few doses of IV diuretic yesterday. The doctors said since we pretty much have our own ICU set-up at home that we could do the rest here. So 26 days at home and 1 overnight stay in the ICU, we'll take it.

Our summer home too?

Bridger had a bit of a struggle over the weekend, that continued Monday at our cardiology appointment. He had been vomiting more and more since Friday, and his breathing was getting worse. While we were in with our doctor, he decided that we should be admitted for a "tune- up". PICU here we come- AGAIN. So we are back. Cath lab is still scheduled for Friday, so our plan is to maximize Bridger's diuretics, give him some blood and hope that he is going into cath in the best shape he can be. For now it looks as though our winter home may also double as a summer cottage, but hey we'll take it if it keeps our little boy happy!

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.