Waiting, and waiting, and....

Waiting. There is a lot of waiting around these parts, and its not the happy, fun excited kind. Its the desperate kind.

 

Desperate because it seems like Eddies apnea is getting worse and worse, and were are trapped in a sort of stasis at the moment, and desperate because, the new year is rapidly approaching, and our deductible resets. The deductible is almost 20% of my husbands gross pay. Digest that for a moment.

 

We are still waiting for the date for the new sleep study, still waiting on the home oximitry testing. I called Apria today, and the say they never got an order, but faxed one over for me.

 

So there you go.

 

Eddie stands on his own now, and babbles a lot. I keep wondering when he will walk, but he spends a lot of time perched on his tip-toes, so I think it will be a while.

 

Tomorrow he sees his GI doctor. That visit will be interesting. Mostly because I have a lot to say in regards to how Miller Children's handled things with Eddie; and why I don't want him put there, ever again.

 

I have been getting less and less sleep. I want a different monitor, something for only heart rate, or only o2 sats. Something that warns me that things are bad, not just that he is not breathing adequately again.

 

 

That might seem whiny, but Saturday night I ended up getting up at four am, and giving up on sleep. It went off (what felt like ) two or three times an hour. When it was not going off he was screaming his head off.  You can't sleep through that. Trust me.

 

Last night he slept in my arms all night, and refused anything less than skin to skin contact. That combined with the monitor screeching every hour or so has left me in a pretty lousy spot.

 

He's lucky he's so cute, and such a funny sweet guy.

 

 

 

 

A few steps forward

Today we saw the new pulmonologist . We were in the office for an hour and twenty minutes talking to her, and she's going to review all the information and email me tomorrow with a better idea of what we will be doing.

As it stands, it is very likely that Eddie's central apnea is a result of brain injury that occurred during his birth. When he was born, the cord was wrapped around his neck three times. He was in distress, and I was about to have a C-section when he suddenly made his appearance. I had about a week previous to his birth where labor kept starting and stopping, probably because he was in distress.

The doctor told us it could be brain, or brain stem. One gets better, the other doesn't, but it doesn't get worse either .Either way, we wont know how badly he has been affected by it until he gets older and he grows and develops more.  Right now, that is the best guess, but we will need more testing, another sleep study, and an MRI.

I am not sure how I feel. At least we are going in a direction? It just doesn't seem, fair I guess? That he has problems he was born with, problems that he got from being born... I don't know. I do know that I really shouldn't complain. There are people out there with children who are going through bigger issues.

For us, right now, its just testing , and waiting. Hopefully we will get closer to a resolution soon.

There's not much to tell at the moment.  We have the next doctor's appointment on Tuesday,  and hopefully we will have more then.
However, Eddie is teething,  and standing on his own now. Once I figure out how to add video I have a cute one of him chasing one of our cats. This is just a checking in, I will have a real post Tuesday. 

And so it goes

Life has been pretty tame here. Eddie is working on standing, in an effort to get into even more.

I got the files together for the new doctor. His apnea monitor records were over 160 pages long. Four weeks of recording, 84 apnea events. the most in one night was 12.

 

I got all of his other files as well. I found out from reading his bronch report that he also has something called Innominate artery compression . See image 2.

 

I am really hoping that this new doctor can help us, a lot more than anyone else as. Right now we are just waiting. Waiting for the appointment. Waiting to be able to move forward. I look forward to a night where I don't have to tape up his little face to keep the oxygen on, when we don't have to plan around doctors appointments. When things get normal again. Well, as normal, as normal gets.

 

My daughter is starting school on Wednesday. She goes between being excited, and not wanting to. I think that she will be happy once it starts, and it will be a relief to get away from her two annoying little brothers. Edan doesn't start school for another year, and we still have not figured out pre-school for him. I am thinking we will sign him up after the new year. I am hoping that by then we wont be bouncing back and forth so much, making it easier to keep a regular schedule. I am not sure how he will do without his big sister there, though. He idolizes her, as long as she's not making him angry. :)