In the Beginning – Part Six
Update Week 5 by me:
Here’s the latest on Aidan. He currently has two major issues going on with him and lots of little issues within that.
First on the list is his breathing. He has frequent episodes of desaturations and apnea. The first means that he isn’t getting enough oxygen in his blood and the second means that he stops breathing. He is on monitors all the time which is standard in the hospital so these things can be caught and dealt with. Aidan’s color does change, which is an even more accurate detection of these episodes than the monitors. (Holla if you hear me moms who have ignored alarms!) He is able to get himself out of these fixes after a few seconds or with a bit of a shake or repositioning of his airway. Each episode in and of itself is not too scary. The scary thing is that he does this a lot and no one knows why. He is NOT is a coma, nor does he flatline, nor has he ever been resuscitated. (There was a lot of misinformation going around, understandably.) He does have a little tube in his nose giving him oxygen but NOT because he doesn’t breathe on his own. He just needs the extra stimulation. He has had x-rays of his lungs and a test to check out his diaphragm and they are working fine. You can tell by looking at him that he works very hard to breath and then gets tuckered out and just takes a break. He just had an MRI that came back clear. (Oh gosh I remember that. We were told he was at the bottom of a long list to get an MRI. We came back to the hospital in the morning and were told he got bumped to the front of the line, as in, your kid is in trouble and we need to look at his brain STAT. Then when the docs said his MRI was fine and I should be glad, I think I had a little hissy fit and said something to the effect of, “Something is clearly wrong and his brain is not fine.”) The structure of his brain is fine. In this regard, since his body isn’t doing all the things it needs to, he is a big mystery.
The second thing going on with Aidan is that he is hypotonic, or floppy. He does kick his legs around a bit more and he moves his arms too. This means that he is also mostly asleep. He does respond to stimulus and he does cry, although very infrequently and never on his own. Somehow connected to this is the fact that he’s not eating orally. The doctors say he has a good suck but he is too tired to make use of it. He is gaining weight because he gets fed breastmilk through a tube in his nose. It’s not indicative of any specific muscle disease but is again a mystery.
For those of you who have been following the saga, he does have reflux but that is no longer a major issue. He gets continual feeds slowly all day instead of feeding every 3 hours so it’s easier to digest. He may also still need surgery to fix the reflux. He may still get a G-tube so we can feed him directly into his stomach if that is the only issue keeping him from coming home. He also had Transient Neonatal Tyrosinemia (the amino acid thing). That has not been a cause of anything else going on but it is now gone.
So in summary, Aidan is in Boston now awaiting a diagnosis (still waiting folks, ten years later) He basically has all the world experts stumped. When they figure out what’s going on, Aidan will be sent back to Maine to be fixed. We’re very pleased with the medical care he has been getting. The nurses are so wonderful and the doctors have worked hard to look at Aidan’s problems from every possible angle. So there is a long haul ahead of us since my boy has decided to educate some already very brilliant people.
That’s all for now – Drs. Heather and Garreth Bowie (not real doctors of anything)
*This is the story of Aidan’s first few months. It starts here. My present day thoughts are in bold.