Where I Stalk The Nurse And Overwhelm You

I have started this post at least 5 times in the past week, but each time set it aside because...well, just because. So I am going to attempt to get all the information from our annual Craniofacial Team appointment down, here and now. The deal is this, once a year we go the hospital and meet with anywhere from eight to ten specialists IN ONE DAY. So you can imagine why I have not been able to complete this particular post. It turns my brain to mush!

Also since a lot of what happens depends on what other doctors have to say or do...it tends to get a bit confusing to piece it all together for a few weeks until all the answers to the burning questions come to light.

Our day started with a bang!

The waiting room was filled with children, from what I could tell most of them were siblings given license to run amok. In order to prevent Austin from being trampled in the play equipment or tossed into the giant fish tank, his Nurse let him run in the hall while I filled out paperwork. So you can imagine the chaos, it was 8am and a bunch of parents buried in paperwork and a bunch of kids gone wild. Sure enough, Austin took a tumble in the hallway and fell on his arm. Perfect.

Our first stop after the crazy waiting room was to take pictures, get weighed and measured. Still fresh from his hallway incident Austin screamed the entire time. He cried and cried and cried until he eventually passed out. Ah, great way to start the morning.

Next up was a visit to Dentistry. Of course. Have I ever mentioned that Austin has a "thing" about having his face touched, mouth pried open and strangers wearing masks? You can imagine the horror show we had ahead of us. So he slept in his stroller with the Nurse in the hallway while I tried to get some work done on my laptop in the waiting room. And lo and behold...who comes waltzing into the room?

None other than Austin's nurse from last year. You might remember, I refer to her as the "Nurse who quit because she said Austin was too aggressive." Yeah her. She quit because my 22 month old son did not want to take direction and on occasion refused to listen to her. Um, ever heard of the terrible twos?? She said he was abusive and that she could no longer work for an abusive patient. She quit so she could go work with adults, because everyone knows they listen and would never lash out at a nurse. {Um, okay.}

So there she was, in the flesh...with a patient who was a CHILD. Big surprise. She saw me and averted her eyes, gathered something and darted right back out of the room. She came back a few minutes later while I was in the hallway checking on sleepy boy. I had some fun for the next 20 minutes making her feel uncomfortable. When she turned her chair to give me her back I switched seats and clicked away on my laptop. When she got up to walk in the hall, I silently considered that a triumph.

So I guess not only am I a celebrity stalker, but I stalk former nurses who call my son abusive. If by staking you consider boring my eyes into the back of her skull, then yes. I'm funny that way. You hang out in my house for nearly a year, eat my food, befriend my family, go with us to Disneyland and then one day out of the clear blue sky QUIT on a morning that I have a funeral to attend because my baby won't follow directions....honey, you've got problems. So yes I will bore my eyes into your skull until you get the willies and leave the room. Made.My.Day.

Dental appointment went ok. Only a few screams and it was over. Next up was ENT. Again no real news here since we had already seen the ENT and gotten our bad news in April. Although this Team doctor did add that Austin's tonsils were enlarged and we should keep an eye on that. Ugh, possible surgery.

Next up, Hearing and Speech. Since we had just visited the Audiologist the previous week {did I mention that yet? It was the hearing appointment from Hell. That is all.} and see our SLP weekly it was quickly determined that we could pass GO and collect $200.

The next phase took us back to the infamous scene of the hallway incident.  Luckily we were quickly rescued by the Nurse in charge of the clipboards and she put us in a room with a couch, a flat screen TV and no one else. Heaven.

First into the room was the Geneticist and the Nurse Practitioner.  Dr.Genetics confirmed all the info from our appointment last Fall with Dr. Genes at the other hospital. He also mentioned that next month he would be visiting the research team in Iowa and would try to get an update on our DNA testing. We talked about all the other stuff we had going on and he was optimistic about Austin's overall diagnosis, especially considering the progress he has made from last year. The Nurse took copious notes on Austin's progress and offered her help if I had any other questions after the appointment was over. She is a dream.

Next up was The Big Cheese. The Plastic surgeon came into the room with smile on his face. He reviewed Austin's sleep study, clucked his tongue and announced that IF the Team Pulmonary doctor gave her consent he would be willing to perform a Jaw Distraction surgery on Austin.

Here's the catch. The Team Pulmonary doctor was not there that day, she had gotten called away on emergency and he would have to consult with her at a later date. Of course.

Now mind you this is no easy-peasy surgery, but he said he would be willing to have it set up within a few weeks. Jaw distraction requires two surgeries. The purpose of the surgery is NOT for cosmetic reasons, it is to improve his airway. The thought is that is we move his lower jaw forward he will have more space in his airway to, dare I say, breathe without the Trach.  I will not go into further details yet because it is not for the faint of heart. {You may Google images, but consider yourself warned.}

Our last appointment of the day was a visit with the Social worker. She basically just wanted to make sure my head was still screwed on straight. We talked about the amount of online support for families like ours and she mentioned a conference I might like to attend. I did not mention that I had stalked a Nurse, I'm thinking she may have frowned upon that.

So all in all we survived the Team appointment and door to door it only took 9 hours. The End.


Psych.





There's more.


A few days later the Nurse Practitioner called me back to say that the Pulmonary doctor agreed to the surgery. Holy moley, you could have blown me over with a feather. For sure I figured they would put it off another year. So now we wait for the ENT to give his approval. If that happens then Austin will be having Jaw Distraction surgery, but not quite as soon as Dr. Plastics promised. It will most likely take place at the end of the summer, before he starts school in the Fall. {Yes, that update is coming soon.}

The End.


Thanks for peeking,