Surgeon appointment update

So after two hours of phone calls yesterday I was able to get us an appointment with the cardio thoracic surgeon on Monday the 25th. The conversation went something like this...

Me: I need to make an appointment for my son to see the surgeon..
Person: The next available apt we have is for August blah blah blah
Me: We the cardiologist feels Mason needed to see the Dr asap because of his echo results
Person: ((sigh)) OK let me put you on hold and go look at the echo results
Me: wait......
Person: Oh OK well we need to get you in sooner than that. Hold on and let me get you the supervisor.
Me: wait...
Supervisor: Well the next available apt we have August blah blah blah
Me: no see echo
Supervisor: hold on while I look at echo
Me: wait....
supervisor: OK we are going to need to get you a sooner appointment hold on while I get the nurse
Me: wait....
Nurse: blah blah August
Me: echo
Nurse: hold on
Me: wait....
Nurse: OK I need to talk to the Dr
Me: wait....

So finally after going through 4 people I was able to get them to make a time for us Monday morning. In fact they just created an appointment for us. I'm so thankful that they are bending over backwards to get Mason seen but my stomach is in knots knowing that Mason's echo results were bad enough for us to get this kind of attention.

The good news is that's George's day off so he is going to be able to be at the appointment without using up any of his vacation days which we need to save up for surgery.

So Monday we will have a better idea of what is wrong and when surgery will be. Till then we wait and try not to go crazy.

Since post with pictures are so much more interesting...

Mason "enjoying" a little sun out in our backyard

and Pierce, because he's just so dang cute and an amazing big brother

and in other interesting news this morning Mason was just crying and crying and seemed to be in pain. Usually when that happens it's because he's having gas pains but no matter what I did to help him he just kept crying. Finally as I went to check his diaper (for the 3rd time) I noticed his Mic-key button was hanging half out of his stomach.

Holy shiitake mushrooms!

Now if your not the parent of a G-tube feed baby then let me explain to you that the G-tube(feeding tube...see black arrow in picture above) is held in by a small balloon filled with saline. At anytime this balloon can get a leak, deflate, or worst of all just be pulled out. They warn you when you get the G-tube that this is not a someday might happen thing. It's a someday it WILL happen thing (as I'm sure all my tubie families are all too aware) and when it does you have about an hour to get to the hospital before the stoma closes up and you have a BIG problem!

So they supply you with a spare so WHEN (not if) the tube comes out you can bring it with you when you go to the nearest ER or GI Dr to get it re-inserted.

Now I watched them when they changed Mason's tube last month (which took 7 minuets and cost us $150.00 but cost the insurance company a ton more than that) and I realized it's not a big deal. Not that unlike putting in a Foley (urinary catheter) which I have done 100's of times as a nurse .


So I took a deep breath, deflated the balloon, pulled the old one out. Checked the new one to make sure it worked and popped it right in. Took me a total of 3 minuets tops and it saved us a trip to the Dr's and at least a $150 bucks!

Mason was unfazed he just sighed and rolled over an went to sleep.

but I was pretty impressed with myself.

I am such a badass!

and since I'm usally the one behind the camera here's a picture of the boys and I on Mother's Day.

Exactly what I expected I didn't want to hear

Well you had your hearing test done today and you failed. In both ears.

From what I understand this could mean a lot of things. That either you are profoundly deaf in both ears, profoundly deaf only one ear with partial hearing in the other, or it could mean that you have only partial hearing in both ears.

We wont know for sure for a few more months and more test but for sure you have a least a some degree of hearing loss.

I read that 90% of those with charge have some degree of hearing loss so I was not surprised but it was still hard to get the results.

I wonder if I will be able to torture you with my singing like I do your brother? Well if nothing else I've been holding you close to my chest so you can feel me singing to you.

Getting the hearing test

The insurance company is fine with us transferring to Loma Linda if our medical group will pay for it. Our medical group is fine with us transferring to Loma Linda if our insurance will pay for it. Both are saying heck no they wont pay.

So it doesn't sound like we are going anywhere anytime soon.

You poor Dad is spend endless hours on the phone with the various case managers and will continue to fight for the transfer but for now we are going on as if we will have to stay here.

The Dr's at CHLA have ordered your sleep study and a GI Dr to see you so we can get your feeding tube surgery done.

We think once these two things are done, and treated as necessary, we SHOULD be able to get home but we don't know how long that will take.

We are going to ask for a case conference with the Dr's to find out what has to be done, and how long they think it will take, till we discharged home.

They have put your feedings back to bolus (larger amount in a shorter amount of time) to get closer to what a regular feeding from a bottle would be like. You are doing well so far, and if you continue to do so we wont have to give you your feedings with a pump.

Daddy practicing giving you your feedings

The nurse giving instructions (note the illegal diet Coke on the table)

Could you be any sweeter?

I learned my first sign today Mason.

I love you Jelly. Always will.