False Alarm

So we had quite the eventful little weekend. It started out on Saturday night when our nurse called off and the company couldn't find a replacement.  We thought it was no big deal; we'd hang with Isaiah in shifts. Remember, he needs someone to monitor him since he gets a slow continuous feed overnight (in case he spits up or whatnot.)

All went well during Dave's shift, but of course once it was my turn we had a few issues.  First, he was so stuffy. He's often stuffy after sleeping for a while but I used the suction machine more than once and he'd get all congested again.  Then I noticed he was grunting...grunting like he was having a hard time breathing.  I opened his shirt to watch him breathe and noticed that it looked like he was working more than usual.  I used our little disposable plastic stethoscope and swore I heard something in there.  It didn't sound clear, it didn't sound like last time, (When his lungs were full of fluid in the NICU, I listened to his lungs.  When he'd breathe then, it'd sound like boots crunching in the snow.), but it wasn't clear darn it.

 I wasn't sure if I was hearing something in his lungs or if it was what I was not able to get in Isaiah's nose.  I just couldn't figure it out.  Cue mommy panic attack, waking daddy, suctioning some more, etc.

I ended up calling DuPont NICU at 4am because I was scared but at the same time not sure. The nurse asked if his oxygen was dropping at all (nope) or if his color was off (nope).  She didn't think I should worry if all was good there.  Isaiah continued to grunt and I continued to worry.  At 6am I called our pediatrician.  This doctor asked the same things (everything was still beautiful in terms of oxygen) and said that if I was still worried, that I should call back at 9 and have them take a look.

So we waited.  Dave sat with him while I attempted some sleep.  When I got out of bed at 8, it was time for Isaiah's breathing treatment.  Even before starting that he sounded a ton better than he did throughout the night.

The clock hit 9:01 and even though he was better, I called.  This time I got a nurse who said the doctor wasn't in yet (argh) but if I was really worried about his breathing, we should go to the ER.


So we listened...


So here's the thing...bringing an OI child into an ER, into anywhere he hasn't been treated, is a super scary thing.  Even scarier because he hasn't gotten his RSV shot yet and is so susceptible to catching any bugs...bugs you can easily catch in a place like an ER.  I called ahead of time to tell them we were coming.

The call went like this: "Hi, I'm calling to let you know that my husband and I are on the way in with our 9 week old son.  He has Osteogenesis Imperfecta. Know what that is? It's brittle bones. He has type III and is extremely severe.  He's really really fragile.  He's on a C-PAP and oxygen because he also recently went through a bout of respiratory failure.  We need your help but we need you to know that we'll be handling him and be extremely hands-on. Got it?"

Yup. Helicopter mom.

We got there.  Once they saw us and I started talking they said "Isaiah? Come this way."  They took us right back (THANK YOU Lancaster General!)

We did a lot of waiting but it was alone in an exam room away from everyone.  Dave filled out paperwork while I called Dr. Bober to give him a heads up.  We did more waiting.

The doctor came and in and took a listen.  He swore he heard something in one of Isaiah's lungs.  He had us go to X-Ray to get a chest film done.

We waited for the results.

They believed he had pneumonia.

Pneumonia.

Oh dear God.  This is something OI parents have warned us about when it comes to overfeeding and NG tubes.  But we're not overfeeding; he's getting less than a child his weight would get.   He has a tube because he has to; he'd aspirate for sure if he ate from a bottle with the pressure from the C-PAP.

The doctor spoke to Dr. Bober at my request.  He wasn't convinced on the pneumonia.  He was thinking it might have just been a broncial (broncio?) spasm.  Either way, they decided to transport Isaiah to DuPont.

We were so beyond scared.

I updated Facebook friends and family because I knew they were worried.  I didn't want to mention the pneumonia.

We were on our way.

I went with Isaiah while Dave ran home, packed bags, and drove to meet us at DuPont.

Isaiah fussed some of the way and slept for the rest.  I expected the ride to be smooth; I was wrong.  It was a rocky ride for sure (which made me even more nervous).

When we arrived at DuPont, we checked in at the ER.  The resident came to check him out and miraculously heard nothing but beautiful breathing.  

The attending came and listened.  He agreed.  Just beautiful, clear breathing.

Talk about the power of prayer? Holy macaroni.

Isaiah and I patiently waited for Dave to arrive.  I breathed a small sigh of relief but didn't let anyone  know because I didn't want to get anyone's hopes up.  We still had to get another chest x-ray to verify it.  

Once Dave arrived, we worked together with the x-ray tech and the respiratory therapist to get his x-rays.  Once that was all done, we waited for everyone to look them over.

They agree there's something in his lung, but it's the same as his last x-ray from the last time we were in the nicu so they disagree that it's pneumonia (last time we were in, they gave him antibiotics just in case since the tests to check everything take 48 hours...but everything had turned our negative).

Since they found nothing new, he sounded clear, and because he was acting like his normal old self...they decided we could go home!

We have an appointment with his geneticist and his pulmunologist tomorrow back at DuPont.  We plan to ask them about what they saw in his lung and what that means.  We're also hoping they'll check his CO2 level.

I'll update as soon as I can but I have a feeling we'll be pooped after another day at DuPont so expect that on Wednesday (and you better believe I'm packing a bag just in case; I figure if I have it ready, we won't have some surprise that will cause Isaiah to be admitted. Crazy logic, but it's logic, darn it).

For today, we enjoy our little homeboy Isaiah. <3