Making Ourselves at Home

You may have figured out from the title of the post that we find ourselves back in the hospital. Just after the last update, Struthers began showing signs of respiratory distress that weren’t being alleviated by our home regiment of tweaking the oxygen intake and taking the nebulizer every 4 hours. Nor had he responded to the steroid boost started Tuesday. And sometimes, only minutes following the nebulizer treatment, he would begin wheezing again. Then there were a few scary coughing/choking/gagging spells during which he turned all kinds of colors and couldn’t catch his breath in between. So after several phone calls with the pulmonologist and trusted medical friends, we decided to drive him to Rocky Mountain Hospital for Children in Denver. Our pulmonologist said we could either wait until it was a true emergency (and we wouldn’t have time to get him to HIS physicians), or we could go ahead and come in for assessment. That was four days ago, and the only time I’ve even been outside these walls was when I moved my car from the ER lot yesterday.

Quick shoutout to this place–we were escorted directly back to an ER room from the front checkin (keep in mind we weren’t in acute distress and Struthers was sleeping soundly in his carseat). Struthers was quickly awakened, assessed, connected to monitors and was given a chest xray within 5 minutes of arrival. As it turns out, our pulmonologist had greased the wheels and was in contact with the ER physician. And though we still weren’t in acute distress at the moment, the ER physician did decide to admit him, as she could see his periodic desaturations and hear his wheezing already at the 2-hour post nebulizer point.

All of this came on quickly, and I’m learning that’s the way it goes with preemies. We really can’t be too careful, as the mildest of illness is enough to overwhelm Struthers’ still-immature system. Thus the obnoxious sign on our carseat that says “STOP! Don’t Touch–I’m a micro-preemie and your germs are too big for me!”…and I’m amazed that coughing strangers in a waiting room still reach out and touch (or let their kids).

–HAHA SO I STARTED THIS POST 2 DAYS AGO———–AND WE’RE CHANGING DIRECTIONS HERE–

So I started out this post very detailed, but now, after 5 days here, we are finally getting some answers and it probably just makes more sense to fill you in on where we are now.

• Struthers does not have a cold as we originally thought. It turns out his extreme congestion is from the reflux he’s struggled with all along. That explains the sporadic ‘clear ups’.
• Reflux is a funny thing for these preemies with chronic lung disease, because often it is difficult to distinguish what’s really going on. The reflux can also cause bronchospasm, which in turn irritates the lungs and doesn’t allow them to move air efficiently. Not to mention, they will eventually aspirate and accumulate liquid in their lungs leading to pneumonia. Most of the time, reflux is a problem babies outgrow as the sphincter ‘learns’ how to close after months being held open by a feeding tube. Unless there’s a structural problem that will prevent that…like a hiatal hernia. My little guy likes defying all the odds–don’t know where he got THAT from!
• You may recall from the last post that we did see a surgeon last week about a procedure called a Nissen that would repair the hiatal hernia and create a ‘tube’ around the esophagus with the top of the stomach, tightening up the sphincter. But doing that procedure on an infant (it is done often, though) presents its own set of issues, especially in a child that may have some underlying GI issues as well. So when we left the surgeon’s office last week, it was with a GI consult in hand and hopes of being able to put it off or at least minimize issues from it. But let’s just say the answers have become very clear. We have to do something about this. We can’t even sort out what is primary respiratory now because the reflux is so bad, and my sweet little boy’s voice sounds like he’s been smoking for 70 years. He’s also refluxing continuously (it doesn’t start/stop around feeds), and none of us can protect our airway all the time, so he’s aspirating a bit and his little inflamed lungs just can’t handle that.
• So surgery tomorrow (Friday 5/22) will be at 7:30am and will include the Nissen procedure/hiatal hernia repair, a G-tube (feeding tube) placement, a bronchoscopy and umbilical hernia repair. It might not solve all of our problems, but it will allow us to eliminate a complicating factor and take a look at his lungs in one fell swoop. A deciding factor in this is that it’s something that would have to be done relatively soon anyway, as congenital hiatal hernias that are symptomatic in infants are likely to just get bigger and cause more problems as he gets older, and there’s no medical management that will help (no amount of Prevacid or Nexium).
• Struthers will have the G-tube in for 6-9 months, or as long as he needs it. It will mostly be used for venting, but also guarantees that he can get the sustenance he needs to continue thriving. While he looks chunky and healthy, he is still only 11 pounds at 6 months old, and we have no room for him to go backwards in that. Weight gain is also the #1 indicator for getting through the preemie respiratory issues in the first 6-7 years.
• We have been incredibly blessed that our physicians we’ve been seeing outpatient have been visiting and consulting us here. Everyday. Have I mentioned I love them? They are amazing and coordinated, and they love my kid–so much that he smiles when he sees them, making them wonder how this kid could be so happy.
• So speaking of incredibly blessed by medical professionals…We are not at the facility where Struthers was born. In fact, we’re clear across town, which in Denver translates to at least an hour away from the other facility. And yet TWO of his NICU nurses (night primary and day primary) have come across town just to see ‘their’ little guy. What an amazing blessing those two ladies are in our lives, and I look forward to Struthers growing up knowing how special they are!So please pray for a safe procedure and God’s hand to guide the surgeon’s hands, and all who care for him tomorrow. Thank you, once again, for keeping us going with your encouragement.