The Rest of the story:Heart Catheter Story

Burke got discharged from Primary's Wednesday around noon and we headed home immediately. Burke was really tired from the heart catheter and not getting a lot of sleep in the hospital. I was likewise tired, because I slept on a fold out chair in the tiny little room at the hospital with Burke. Jan, my mother in law for those who don't know, traveled with Burke and I and she was likewise tired from the long drive and also staying at the hospital with us all day long. Burke fell asleep in Layton area and he slept almost to Mountain Home! It was crazy- we only made one stop in Mountain Home! Burke traveled well the rest of the way home and was anxious to see Emma and daddy.

Burke is doing well and is pretty much recovered from the procedure. This heart cath. was hopefully going to help with Burke's oxygen levels and his overall quality of life. But, we are noticing he is still huffing and puffing a ton, like he did before the cath. and he also gets tired really quickly. The tiredness could still be due to him recovering from the cath, but we were hoping there would've been a more noticable difference. We are still hopeful that over time the arteries will grow and his oxygen levels will go up in order to sustain his life as he grows. Needless to say we still have tank. And we probably will have tank for awhile to come. It's Burke buddy and that is no joke, he walks over to it and just hangs out with it. He is the sweetest little boy.

liquids again and we don't have to thicken all that he eats. We will be getting a swallow study done to make sure that he is not aspirating the liquids but we are so excited for Burke to drink again. He had water the other day for the first time in almost 2 months!! He did great. FeedingI guess I never mentioned the other tests that they did the morning after the cath. He had a comprehensive ECHO done and he did awesome. He was expected to lay on the table while the tech did an ultrasound on his chest. He fell asleep within 10 min. and was asleep for about an hour. He was a champ and the test looked great. He also had a scope done to check his vocal chords and the right vocal chord is vibrating again!! That was the greatest news I had heard in a long time!! They must have just stretched the nerve in his neck when they had to put him on ECMO in December. Since the vocal chord is moving now, we can try to get him to drink thin Burke is still a huge ordeal and he basically doesn't eat anything by mouth anymore because he is afraid of it going down the wrong tube and hurting him which I don't blame him at all. We are still working with our speech therapist Sharon which has helped a lot. Here are some pictures of our little trip.

We stayed with Martha (Burke's aunt) down in Orem and this is Burke when we first arrived at her house- he immediately found the piano! Thank you so much Marth for letting us crash at your place, it was great to see you like always and I think you have to move up to Idaho because that massage you gave me was awesome! She pulled out her massage table (she is a massage therapist amongst many other things) and worked on my awful back. I seriously haven't felt that relaxed in a long time. Here's B in the same day surgery waiting room at Primary's. He has no clue what is going to happen. I just hate that.

These next few are in the room where he gets checked out by the nurse before the cath. I love pictures of him in his hospital jammas. We had to wait awhile in there, but B was a trooper. And I was so glad that Jan came down with me, she was a HUGE help and played with B when he was getting antsy. B loves gwamma and we are grateful for all her help she gives us! Here is a classic Burke picture, him sucking on his fingers while holding and smelling his blanket. I love it because it gives him so much comfort through all he has to go through and deal with. So a HUGE thank you to B's girl cousins and gwamma for making such a perfect lovie for Burke. I am sure he appreciates it too!