Zeke on the way home after getting removed from Oxygen

Okay – finally some news, but first some tougher news. 

We met the hearing specialist at Swedish on Sunday morning to go through the next round of tests.  That morning wasn’t any different than any of his other tests; he failed the two different types that they gave him, and his scores were pretty low.  We’re still reading up on all the details, but in a nutshell, there are three types of problems that can lead to hearing loss; blockage, nerve damage and brain interpretation.  At this point, we’re pretty much ruling out blockage, such as fluid in his inner ear, since he hasn’t improved in four weeks.

That leaves nerve damage and brain interpretation issues.  These tests were still somewhat on the screening end – it’s actually good news that he failed both of the tests.  In a brain interpretation scenario, the signal is leaving the ear and traveling up the nerves to the brain, but the brain isn’t translating the impulses correctly.  This is the worst situation, since there is nothing they can do if the brain won’t translate.  If there is nerve damage, the brain will interpret, but the sounds don’t travel up the paths to the brain so it’s irrelevant.  The good news with nerve damage is that you can have partial nerve damage, and they can work with the nerves that you DO have.  Which is why hearing aids work – they can boost volume, etc to translate other sounds into the spectrum that you can process.

So he failed both tests, which is actually good – if the nerves aren’t sending the proper signals, then the brain won’t appear to be processing, causing a failed test.  If the nerves are functioning correctly and the brain is failing, that’s obviously bad.  But, all things considered, it appears that he has nerve damage.  This also explains the situations where we’ve seen him startle, etc.

The next round of tests will come hopefully later this week.  The tests he’s undergone so far have not ventured into the ranges of volume, pitch, etc, so that’s the next step.  If we can see that there is a certain range or volume level that he can operate in, that’s going to help determine the next steps.  They want to get this done as soon as possible, because if there is something that we can put in place to help him hear, they want to do it quickly due to his age.  The next three years are critical to his language development, and he needs to be able to hear as much as possible to help him out with that.  We’re still reading the ramifications if he’s mostly deaf through early childhood, so I can’t comment on all the details yet.

Interestingly, it seems that the nerve damage, if indeed that is the problem, stems from his cord knot and not the anginomas or the bleeding he experienced.  They say that the blood oxygen loss from the knot before and through the birth process almost certainly contributed directly to the nerve damage that we’re seeing now.  It does open up another door – are there other areas of damage from the knotted cord that we haven’t seen manifested yet?

On a more positive note, we had his follow-follow-follow-follow-up doctors visit today.  We were pretty concered with his levels of weight gain at the previous visit and really needed to see 4 to 5 ounces put on.  Turns out he took his challenge seriously and threw on 8 ounces in five days – serious weight training!  So that’s very exciting, he’s starting to fill out a bit and not look quite so emaciated. 

But the really good news came as quite a shock – they took him off the oxygen for about 30 minutes and his O2 levels didn’t change at all.  So rather than the three more weeks that we expected before he was done with the oxygen, they took him off today!  Apparently his lungs did quite a bit of work over the last few weeks and they’re comfortable pulling him off altogether!  We’ve still got all the equipment and we’ll keep it for a while in case he seems to be having trouble, etc, but he’s been off since around 1pm and is doing quite well.

It’s bizarre to carry him around without tubes trailing around and it seems to have made a big difference in his grumpiness levels.  Apparently having those tubes sticking up your nose IS as uncomfortable as it looks when you’re a few weeks old.  It’s obviously a tremendous relief not to have tubes trailing all over the house as well…

So it’s been a good day – hopefully he’ll sleep better with the oxygen gone as well – we could all use a good nights sleep.  Thanks for the prayers on the weight gain, they clearly helped – and what a blessing to have the oxygen off so unexpectedly.  It’s like getting a new baby!  We don’t have another standard appointment with the pediatrician for two weeks, rather than every three days as we’ve become used to.  The next thing on the radar is the next hearing test – please pray!