We're back at Scottish Rite

Reece and I made the decision to bring Holden to the Scottish Rite Emergency Room on Monday evening, as his work of breathing and oxygen requirements had increased. And we could just tell that something wasn't right. He has struggled and in my opinion has never fully recovered since his reflux/hernia surgery. Doctors admitted the little guy so they could take the time to try to figure out what is going on. They quickly ruled out RSV, Flu, etc. Based on an echocardiogram, it does not appear that his pulmonary vein stenosis has gotten any worse - of course the cath in January will be much more exact. After discussing things, Holden's specialists think his medication for the pulmonary hypertension may be the cause of his lungs getting wet and thus creating some of his recent respiratory struggles. Although it would seem we could just stop giving him the medication causing the problem, we have to be very careful and mindful as we make changes as Holden is still fragile and sensitive to change. And so much of this is relatively new territory for doctors as pulmonary hypertension and pulmonary vein stenosis are new conditions and certainly not very common. Doctors plan to keep the little Monkey here for a couple more days so they can monitor him as they slowly begin weaning him off this one medication. The hope is that he will respond favorably to the weaning and his lungs will no longer store the excess fluid. This should mean he won't have to work so hard to breath and that slowly we'll be able to reduce his oxygen levels to where they were post surgery.

Holden seemed much more himself today and was flashing his sweet smile at all the nurses and doctors. We were able to wean him a bit more off his oxygen and slowly his work of breathing is improving. Hopefully we'll be home by the end of the week. And in the meantime, I just continue to pray for Holden's healing.

A tough week for the little guy...

Holden had some respiratory issues this week and we are not exactly sure why. We know his lungs were wet and he was requiring more oxygen. It could be another cold or it could be complications from his ASD (hole between his heart's upper two chambers) or our worse fear, it could be his pulmonary vein stenosis progressing. We feel like we had one foot in the emergency room all weekend, until this afternoon when the little Monkey seemed to start feeling better.

I pray for and expect a Miracle for Holden, however, no matter how positive I stay, weeks like this scare the heck out of me. It is a reminder of how fragile the little guy is. And a reminder that we need to enjoy each and every day. I gladly left the house a mess, so I could snuggle with the little Monkey when he felt poopy. It has never taken me so long to decorate our Christmas tree - but that suddenly did not seem quite so important. I know y'all are already praying for Holden, and I thank you! He's in God's hands so I am convinced he can make it through all this.

We plan to schedule an appointment with his cardiologist, so we can hopefully determine why he's been struggling more this week.


On a lighter note, our friends Ken and Carol brought Holden a gigantic singing "Happy Holiday" balloon on Friday. Today, as he started feeling better, he was obsessed with it. He would pull it close and try to wrestle with it. And without realizing how, he would suddening make it "sing". And that would put a huge grin on his face. And even when he wasn't playing with it, he wanted to know where it was at all times.

I love how such simple things like a balloon bring him so much joy!