Late Sunday Night - A Josiah Update

Again, I apologize for the long pause. The wireless @ Easter Seal House has been down all week and I'm not too keen on tying up the computer in the NICU (just doesn't feel right). So, anyways, here is a recap of Josiah's week.

The week was going very well f0r Josiah until Wednesday hit (isn't that just an ominous beginning?!) Wednesday was basically a double-whammy for him. First, unprovoked in his sleep Josiah's heart stopped completely for about 7-10 seconds and then restarted on its own. It seems that it was related to a long pause in his breathing that occurred just prior. Josiah commonly has pauses in his breathing while sleeping (lots of babies do) but this stop was longer than normal and led to his heart stopping too. Uh SCARY! Josiah has since had two heart tests and I don't think any results have back yet (the weekend plus a universal closure day got in the way).

Further, that same day just after this Josiah went in for a CT scan to get a better understanding of his respiratory make up. We don't know all the details, but the CT technicians handled Josiah very aggressively (probably suctioned too deep, too strong of suction volume and so on) and the nurse that accompanied him (one of our teachers) was LIVID with their approach and attitude, but they refused to head her instructions and request to help out. We're hoping that this week we can sit down with her and see what changes can be made over there.

Anyways, as a result of this Josiah's trachea is very inflamed, so much so that he's having a hard time maintaining a constant airway. On a typical good day Josiah has a hard enough time getting enough oxygen; this just made it that much worse. Not only has his trachea swelled (narrowing his airway), it also must burn like fire when he coughs and sneezes, and now pretty much any cough will send him into a dying spell.

So the doctor's have put Josiah on CPAP. What this means is that when Josiah is resting or coming off a rough breathing moment he is hooked up to hose that provides 'pressure support': Josiah still does his own breathing, but there is a little bit of a push so that his airway can stay open. While this has really helped him to relax and he's getting deeper and longer sleeps than ever, it causes other problems. CPAP causes Josiah to swallow a lot of air, which means Josiah has been throwing up A LOT in the last few days because his belly can't handle all this air and food at the same time. Today the nurses have put Josiah pretty much on continuous feed (a non-stop slow dribble of milk) so that there's room in his tummy to handle all this extra air.

Hopefully, now that we think we've figured out his throw up woes, it will only be a couple more days until Josiah can come off CPAP altogether, although there is a slight possibility that he could end up enjoying it which means he might go home with it (lot of trach cases do). But time will tell. It's really unfortunate, but the head doctor told us that if Wednesday didn't happen Josiah could have been home in a month. Sigh.

The results of the CT were very interesting. The CT scan provided a 3D image of Josiah's anatomy (mouth to lungs) and we could move the camera in and through his body from multiple directions and perspectives. It was very reassuring to see that although Josiah does have an artery crossing his trachea, it will not occlude his airway (there's enough space between the artery and the trach so that the artery will never collapse against the trach). And we also discovered the source of Josiah's dying spells: it's not his tracheal malaysia like we once thought because he trachea stay open (albeit it does get really narrow at times). The problems lies at the intersection, where the trachea breaks into (in Josiah's case) the three bronchials. Two of Josiah's bronchi are quite floppy and have a really hard time stay consistently open, and one seems to pretty much close every time he breathes out.

Fortunately, people grow out of this. Unfortunately, this takes time. It can go two ways: either Josiah's anatomy changes so that the bronchi don't collapse any more (or as much) or they grow bigger so that even though they continue to be floppy, it wouldn't close the whole way.

We also discovered that Josiah's heart is pretty much midline (not off to the left like the rest of us). This means that Josiah's trachea is also pushed slightly to the right (because there's no room for it to go straight down), and this is the reason why the artery crosses over his trachea.

So that's a lot of stuff to process. Thankfully, Josiah hasn't had a spell since about 9 this morning (but that one lasted for about 20 minutes - bagging, suctioning, giving extra oxygen, repeat as necessary). You can pray that his trachea will heal and that his trachea/bronchi will also grow to the point he is stable. Also pray in regards to his heart: the doctors don't know if this is a heart or a brain problem, so Josiah will be going through more tests over the next couple of weeks.

Visitors oh visitors: my parents are out this week, Jenny L. & Naomi R. dropped by, Leanne K. who I always forget because I haven't been at the hospital the same time as her in the last two months, and our anonymous 'Tuesday-dinner-donator'. Thank you all.

In God's Graces & Peace.
- Andrew, Marie & Josiah