That was what today was like.
Last night I barely slept. I kept going over my arguments in my mind preparing to fight to have the surgery done. I reviewed anatomy and what I knew about your respiratory status thinking of every thing I could to use as ammunition in our war against the Dr's.
Well, knowing the way the hospital works even though our meeting wasn't till 10:30 am I got to the hospital early. I decided to stop by the cafeteria first figuring I wouldn't get another chance to eat till the afternoon.
I had just sat down to eat when my phone rang and it was your nurse Susan asking where I was and if I could get there asap so I could talk to the Dr (I was already out the door before she finished her sentence).
So I got there. There was the ENT, the ENT fellow, tow neonatal fellows, two residents, and me. I took a deep breath and prepared to hear the Dr out and then get ready to argue.
Then the Dr showed me the picture of your throat (looks the same as here) and discussed how your stenosis was only minor and not something that need to be treated but that they had seen the laryngomalacia (extra tissue around your vocal cords) block your airway a few times and he felt, if we agreed to it, that surgery was warranted to treat it.
a video of you blowing bubbles and looking at your mobile
I was stunned. Here the surgeon was saying you needed the surgery that we had been fighting to have done for the last 3 1/2 weeks JUST LIKE THAT!
So he said to me I could go and think about it and let him know if we wanted the surgery done. I of course said I didn't need to think about it. We wanted it done.
The ENT then said when I was ready to sign the consent to contact his fellow and I could sign the consent. I again said no need to wait I was ready. I even tried to convince him to take you tomorrow but no go. At least I tried.
So the consent is signed. You are to have the surgery on Monday. I have also requested that they do your feeding tube surgery at the same time to avoid intubating you more than once. They all said they would try but couldn't promise anything.
Since we have 6 days I will continue to push, beg, whine, complain, whatever it take to get both surgeries done at the same time. Maybe they will agree just to shut me up. LOL
Now we just have to hope and pray that this surgery is what you need to breath on your own or at least well enough to go home on oxygen.
Did you hear that Mason? HOME!
Well there may not have been a battle but I still feel like we won a great victory for team Mason.
6 comments:
YAY! What wonderful news!! You are an awesome Mama:) You have such a beautiful family and you are all staying so strong in this really stressful time. You go girl:)
That's good news! He is so, so precious <3
You go girl....more power to you. xoxox
oh if you were to see me right now ud probly be surprised im not litraly jumping up n down in happiness IM READING SOME GREAT STUFF LATELY today on a few people and ill say this I LOVE LOVE UR NEWS TO
I think you did indeed win the battle - you won it at the earlier, secret doctor's meeting you were not invited to attend! I'm sure they got together, agreed that things were actually possible either way, reflected on you, your personality, and their previous history with you, and took the easier and wiser course. When medics meet parents who are informed, and thinking things through, and articulate, and strong, they usually feel quite energized and encouraged and supported - even if they are trained not to show any of that. As for combining several surgical procedures under one anaesthetic? Well the CHARGE literature has lots of references to the importance of this for kids like Mason. I just love the photos of him - he looks soooo smart and alert and bloody-minded!
Yay! Awesome news! I am so happy he is getting what he needs, what you know he needs. I pray his upcoming surgeries go well and that he is able to go home soon!
Post a Comment