Life takes us weird places sometimes

Devin now! 4 months old

In the last two months we've been on a crazy rollercoaster ride that seems to be coming to an end right now. At the end of March, after a trip to playgroup, Devin started coughing and sneezing (just like Luke was doing). This rapidly turned into about 2 days and nights of unending screaming fits accompanied by fevers of 103 (keep in mind he was only 7 weeks old). Devin would only fall asleep held upright on my chest for only about 20 minutes at a time - AROUND THE CLOCK. Friday at about 5am I packed Luke and Devin up and took them to Andrews Air Force Base ER, where after 7 hours we were discharged with a diagnosis of RSV and directions to give Devin tylenol for his fever.

Not giving the diagnosis much thought - I had never heard of RSV and the doctors made it out to be like the common cold, I went home and dosed Devin every four hours. Things seemed to get better until Sunday evening just before dinner I noticed Devin was trying to cry, but couldn't make any noise. We left right away for the ER, where after I told them Devin was having trouble breathing, they had us wait in the lobby for an hour before taking us back to have his temp taken. Even after they saw that his fever was over 103, they sat us back out in the lobby where we waited a long time to be taken to a room where we waited again to have someone to listen to his lungs. All the while I sat there telling myself that if it was something serious, they would have a sense of urgency. Anyway, after 6 hours there and an x-ray, an ambulance was finally arranged to transport us to Walter Reed Army Medical center. We waited about another 3 hours before that got to there to take us. Devin received NO antibiotics, no treatments whatsoever, except for a 10 minute neb-treatment. In fact, I was told by one of the techs that he couldn't hear a problem with Devin's lungs, which further solidified my belief that I was being a crazy over-worrying mother.

Why am I telling you this? To caution you. Because no matter how crazy you think you are being, you have to speak up and advocate for your children. I think back on both trips to Andrews ER and wonder if Devin would've gotten so seriously sick if I had been adamant that they give him quick and better attention. What I know is that I learned a really important lesson and have an experience to share with other mothers.

En route to Walter Reed, the nurse and EMT decided that Devin was sick enough to go straight to the ICU. About 12 hours later, Devin's left lung had completely collapsed and he was fighting for his life. During a planned intubation (which took doctors 3 attempts) Devin had a bad reaction to vent support and his lungs clenched shut. If you know medical lingo he had a 'hypoxic episode' and 'bronchospasms.' His heart rate fell and in order to bring that up and help save him, the doctors drove an IO needle that delivered dopamine and epinephrine into the bone of his right leg. The doctors breathed for Devin manually with a bag for approximately an hour before they were able to stabilize his blood pressure and heart rate and successfully place him on the vent.

The best way I can describe the feeling of being told that your child is dying is sort of being filled with this impotent energy. Like being in one of those dreams where you are running toward or away from something as fast as you possibly can and not moving. You can't breathe and the pit of your stomach is hollow. That came after the initial shock that my healthy, full-term baby was 'not doing so well.' All along I was being told that this was standard, just give him some tylenol, then just give him some antibiotics and neb treatments, he'll be FINE. The sight of his white and completely motionless body laying on the table with a doctor breathing for him with a bag is forever seared into my memory.

Devin was transported to Children's National Medical Center in the event that his condition would further deteriorate and he'd need ECMO - the heart and lung machine that bypasses both and does all of the work. He was intubated there for two weeks, on a nasal cannula for one, then finally released home where we administered antibiotics and anti-withdrawal medication (he was on morphine while intubated) around the clock.

Devin day 1 at Children's National Medical Center

Withdrawal was a hellish experience and I'm sure he didn't have it as bad as he could have since the medication was very slowly being weaned. Lots and lots of sweating, crying, throwing up. Urine and sweat both have this really strong distinct smell when you are on antibiotics and I think that'll be a memory trigger for me.

Fast forward 8 weeks and Devin is a whole new baby. Happy and healthy, he is doing just what he should, right on time. He is on no medication and is done with his follow-up rsv/pneumonia visits. We are now seeing an orthopedic doctor for injuries that he sustained from medication leaking out of his IO needle during the emergency. Devin has lost feeling in the bottom of his foot (it is dulled in his toes and top of his foot) and is no longer able to voluntarily move his foot or toes. He has muscle and arterial damage, the extent of which we will probably never fully know. The foot, which has curled into a pointed position, will be placed into a cast and then brace to correct the position. As Devin grows and tries to walk, his doctor will make changes to care and assess what needs to be done to give him the most function of his foot and leg. We are told that he will walk and run and jump and play just like a normal child, but with his own special modifications.

We are so happy to have our healthy baby who now seems to be growing way too fast! We're back to the grind, back to normal (kinda), and hopefully back to blogging!

* Please take this story as a caution. RSV is serious, especially in small babies - EVEN IF THEY ARE COMPLETELY HEALTHY BEFOREHAND. You need to be your child's voice. Don't worry about what other people think! You are mom (or dad) and trust your instincts!