He was suppose to have his head CT and procedures all at the same time, all after he was put under anesthesia in the OR. After waiting two hours in the holding room before surgery (I'll refer to this room as our 2x2 cell from now on out), we learned Ben wasn't on CT's schedule, but only the OR schedule. To make a very long story short, we were told to take Ben (who was in his hospital gown) and all of his stuff (including his attached pre-surgery items) downstairs in his stroller to get his CT. We then had to register and wait to be called with everyone else in the waiting room. He got the CT without sedation or anesthesia (thank goodness Ben was still and cooperated) and we carted him back upstairs to our "cell". I pity anyone who came in contact with us during that time frame. We are waiting to hear back from Patient Relations to see what happened and what we need to do to ensure this never happens again.
His airway scope showed no signs of improvement. SHOCKING! He has been doing so well, the amount of trach suctioning is so much better and he is able to make noise now... I thought at least it would be improved. No such luck. The ENT doctors don't understand and their only suggestion is to wait until he is much, much older and hopefully it will resolve on its own. I'd like to see if we can get another opinion. I'm just not happy with that advice... something has to be causing this and if I wait 10 years to find out we could have done something earlier I would never forgive myself.
I did ask about a Passy Muir Valve (see below for more information - click on picture to read the text) so Ben is able to vocalize more. They didn't think he would be successful with one considering his swelling, but I think they humored me and sent an ENT nurse down to try during recovery (which the chances of passing right after waking up from surgery are even worse!). A few modifications had to be made, but Ben passed!! Let's hope that lets him get out more of his sweet, little voice.
4 comments:
Can't believe you had to sit there that amount of time....there is no excuse for that. I'm really surprised that there was no improvement in his airway. Thought for sure they would have good new for a change.
We can hardly wait to see you this weekend. Looking forward to "hearing" more from Ben.
Love to all,
Gramma Mo
Oh yuck, I hate hospital days like that. I don't know a lot about the whole trach scene to be honest but I am feeling your second opinion thing big time...that doesn't sound like an answer we'd be happy with, either.
Glad that day is over for you.
A 2nd opinion will never hurt!! I know I have had 3rd opinions sometimes just because I felt like they were not really listening to me just trying to get me out the door.
I hate days like you had at the hospital, I swear there are so many people who do not read all the way to the end of everything that needs to be done and just hope no one notices.
I hope things get better and I am glad Ben was so good at the hospital for you.
Hugs,
Crystal and Eva
Sorry you had such a bad day! We were in the holding room for 3 hours waiting on Katie's surgery a couple weeks ago, so we're definitely feeling your pain on that one. Thankfully, too, Katie was really good and cooperative. I think I would have lost my mind if she was crying and wanting to leave.
That's really frustrating that they didn't have Ben's CT on the schedule, too. We managed to get five different procedures all scheduled for Katie in the same day, so they definitely have the capability to get it right. Someone messed up big time--can't blame you for being upset with that one!
We're sorry to hear that Ben's airway didn't show any signs of improvement. I'd definitely be looking at a second opinion, too--it can't hurt anything. Has Dr. Cotton looked at him, or is that who you were already working with?
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