Children's Hospitals

First I'm going to begin by saying happy 4 month birthday, Robbie! I took some pictures right before our night turned for the worse. I've been dying to use these Etsy stickers so I'm glad I practiced the night before. The pics didn't come out that great but at least another month didn't get by me.

The last 7 days are all a blur now - several blue spells, two Children's hospitals, two scopes and one MRI.

As you probably already know, Robbie stopped breathing Thursday night. This has been a recurring problem that I've been trying to describe to our pediatrician and GI doctor for at least 2 weeks. Here's the thing: he turns blue for what seems like forever, we assume he's choking so we treat it as such, that doesn't help, all of a sudden his color comes back, he starts breathing again and he's all smiles as if nothing happened. It's so confusing/scary for us. The smiling is what really throws us for a loop. That's why we haven't gone back to the ER since May. Thursday's episode was the longest and scariest though so we decided to take our on-call pedi's advice and take him to Children's Legacy. This is after the paramedics left our house...again. They are beginning to know us.

While Robbie was there for observation, it happened again but this time Doctors were there to see it too. All 6+ times this has happened, he's at the end of his bottle AND trying hard to poop. Side note: Robbie has severe tracheomalacia (a floppy airway due to his TEF birth defect/repair) and what we've learned from this entire experience is that when he bears down to push, his already compromised airway, completely collapses on itself causing him to stop breathing. They call this a valsalva maneuver. He was transferred to Children's Dallas on Sunday because they wondered if there was anything else contributing to his collapsing airway (i.e. his heart, blood vessels, etc). If so, this would call for surgery. So, off to Children's Dallas for a MRI we go. We thank God that the results led the surgeons to decide that surgery isn't necessary at this time. Robbie stayed for observation a few more days and we finally came home yesterday afternoon, with medical equipment this time.

So what are we doing now? Taking a very conservative approach - reducing the amount of volume in his bottle, giving him medicine to help with his pooping and medicine to improve his muscle tone around his esophagus and trachea. Plus, we're buying time. That's the only thing that can really improve Robbie's breathing issues - he needs time to outgrow the tracheomalacia. Doctors say it usually takes 18-24 months. The more he grows, the stronger and longer his trachea will get, the easier it will be for him to breathe.

It's definitely possible that Robbie will turn blue again despite all that we're doing. As a matter of fact, it happened again on Tuesday night while we were still at Children's. I'm not gonna lie, I am scared all the time. But now that we have a far better understanding of what is going on (we got a video to see inside his trachea) and we know our first step now is to open his airway, I feel more prepared for the future.

Please continue to keep us in your prayers. In particular, for us to have the strength and courage to take on each day without being afraid of what could happen and for Robbie to continue to grow stronger everyday, not get sick and...poop more easily :) Thank you!