Twelve Years

10.25.13

We’ve waited twelve years and three months and for the first time ever we’ve looked our son in the eyes. Plural. They’re aligned. He doesn’t have double vision, a head tilt or dimming vision.

straight eyes post op

Of note: I also didn’t pass out during yesterday’s surgery or recovery… which makes it a very different experience than the other three.

 

It’s Not About the Motherfucking Fax People

05.21.12

I guess I wasn’t clear in my earlier post. You see the fax gave me tsuris but the problem, the real problem is that my son is going to have surgery for the fourth fucking time.

So yeah, HIPPA is a logistical nightmare. The surgeon is a mensch and his office staff is kind but they are in over their heads. That they won’t fax another physicians office (by the way physicians are the only dinosaurs still using those damn machines) is absurd and speaks to the fact that somehow lawyers and MBAs are involved in my son’s surgery.

So I’m pissed and it’s a LOT easier to be pissed about the fax than about the fact that once again my son will be on a gurney, once again my son will cry blood for a few hours and once again I’ll hope against hope that this actually works.

And efax.com isn’t particularly reliable. I know you think your 23943287493 emails are problem solving but they just irritate the fuck out of me. It’s entirely possible that I’ll have no friends left at the end of this next chapter and (no offense) today that seems like it would be just fine.

 

Calling Dr. Freud

05.21.12

fax-machine

I can’t get my fax machine to work and everyone with a chronic condition knows that you must have a fax machine because physicians can’t email anything because of HIPPA. I think HIPPA was written to benefit psychiatrists because I’ll be needing one by the end of the day.

Alexander has a pre-op appointment today. We’re going ahead with surgery #4 for strabismus. I’d hoped that we’d be able to do it in December of 2012 but for a variety of reasons it really needs to happen now. None of the reasons are particularly interesting.

So once again I’m at UCLA hat in hand and begging for a cancellation appointment for my son.

In order to be put on the schedule Alexander must first have a pre operative physical exam from his pediatrician. This is mostly for the anesthesiologists.

I’ve known for the past few weeks that Alexander needed another surgery but it took me until Friday to act on it. I called the office at UCLA and requested Alexander be put on the cancellation list. The folks at UCLA told me they’d fax forms over and I explained that the fax machine was not on and that I wouldn’t be home Friday to turn it on so we agreed on a Monday fax.

This morning they sent the documents over via fax and I didn’t have it set up quite right. I adjusted the settings, called the office and asked them to resend it. They resent the forms and the first four pages are great, the next twelve are blank. My all in one was out of ink. Of course.

So I call to have them try for a third time but no one is answering the phones at just 11.30. I’m pretty sure they take lunch at noon so the lines must be jammed. I ask the service to please fax them a note and ask them to fax me and the doctor’s office directly. They don’t like sending faxes directly to the pediatricians because they get lost she explains and I try to not scream or cry.

I’m picking my son up from school early today to bring him to a doctor’s appointment, he doesn’t know why he’s having it. I didn’t want to ruin his weekend but I did ask him on Friday how he felt about his eyes. I asked him if he wanted to fix them because it’s a close call as to whether or not they need fixing. Medically it’s undeniable but if he wants to learn to live with it I’d be open to that, or at least I think I would be.

I’m back in the world of medical nonsense where gifted surgeons are surrounded by blithering idiots led by a team of lawyers who won’t allow them to simply email me a blank document because someone told them that someone might sue.

All because I ran out of ink.

Someday I’ll Tell You About Kenmore

01.26.12

Traveling to Chicago in the winter is a bear. It’s cold and the traffic is miserable. If there’s only one thing you ever learn from me in your entire life let it be this:

There is a train station in O’Hare Airport. Use it.

I was really happy to meet so many women who I’ve followed online for years. One in particular is Bobbie who had a very serious accident on her way home. Of course I was happy to be with new and old friends but after coming home and hearing about Bobbie, her husband and her kids (just bumps for them, yay!) I sort of didn’t have energy to write about the day.

I will soon.

Baseball season is starting and it’s off to a rocky start. I watch Dance Moms with the kids (just so I can feel smug and superior) and then I realize that the Dance Moms are a little less sociopathic and a little more realistic than the Baseball Dads. The Dance Moms think that their daughters are going to dance their way to Harvard. The Baseball Dads seem to think that their sons are all going to be the next Albert Pujols. It’s possible that one of them will be great, but statistically they’ve got a better chance of being a CEO of a Fortune 500 company than a Major League Baseball pitcher.

I played tennis today and it was awful. I was winning 4 games to one and then we sat down to take a break in the shade (86 degrees today) when my partner asked me how Alexander’s eyes were. I lost set 6-4. In fact I lost some of those games without ever scoring a point.

I keep wondering if we made a terrible mistake by not forcing Alexander to have the “fine tuning” stitches like the doctor suggested. I’m not sure that his eyes are straight (they could be) but I worry that we cost him another surgery by not insisting that they leave some stitches hanging out so they could tweak the eye the second day.

I’m at a standstill today thinking about that. I might try going for a run later. I’m not sure how to get thoughts like these out of my head, but I’m absolutely unable to focus or concentrate.  

Surgery Day: Stuffed Bears, Smiling Nurses and Nausea

12.15.11

First off, there’s a little business to take care of. I was thrilled to be able to send out this screenshot to Josh over at Dad Street.

kinect_winner

I seldom do giveaways because I’m lazy and it makes me very happy that a parenting blogger has won.

That was sort of the end of the joy today. Alexander had surgery at 10am, which is quite late in the world of general anesthesia. I’m happy that the time got pushed up so late because Mr. G wisely canceled his 2pm meeting in Las Vegas. Had he not been there it would have been disastrous.

When we checked in at 10 there were a handful of other patients there. One was a teenage girl who they quickly moved to a private room. She was sobbing and saying, “I don’t want to do this. I don’t want them to cut my eyes.” A handful of nurses tended to her, an anesthesiologist joined them, her surgery was canceled, and then her surgery was uncanceled. She was the surgery before Alexander. It set us back an hour.

If you ask me who the person is that I could relate to the most today, that teenage girl is the one. I would have had the same fears and meltdown. My heart ached for her as it did for my son.

The nurses in the pre op room were amazing. If you aren’t in a hospital setting it’s easy to forget that nurses go into their profession because they really want to help people. They had a teddy bear for every kid as well as a coloring book and if they weren’t smiling when they were 10 feet away they got a smile on their faces before approaching any patient. Watching these women was inspiring. They make people’s lives better with every smile and they know it.

Alexander wasn’t nervous. I don’t know why, that child has nerves of steel. He’s been involved with every decision along the way and at ten is far more mature than I at 41.

It wasn’t until noon (or perhaps later) that the youngest anesthesiologist known to man came to prep Alexander. Getting yes’ed with Sharpie was a highlight of the day. Does this look like a child who is worried about an operation? 

prep for strabismus surgery

Mr. G looked confused about the Sharpie and then he and the anesthesiologist were horrified when I said, “Uh yeah, how do you think we went to private school? … doctors sometimes remove the wrong kidney.” Mr. G kicked me and the child anesthesiologist took Alexander’s vitals. We were introduced to the anesthesiologist who supervised and Mr. G and I sighed in relief. He was a full on grown up.

Once they wheeled Alexander to the back I dashed to pick up some food for myself. I hadn’t eaten since the night before as I didn’t want to eat or drink in front of my son who wasn’t allowed to. I grabbed some chili, ate a few bites and fell asleep in the family room.

I woke up to Dr. Velez and big smile. We’ve known Dr. Velez for ten years, he trained under Dr. Rosenbaum and has watched my son grow up in those eye exam chairs. I wanted to cry when I saw a friendly face, but instead I threw up. Repeatedly.

Mercifully I was quick enough to vomit in private. If there is one thing you learn from me it is this:

Never eat chili in the hospital cafeteria.

Mr. G did an amazing job of caring for both Alexander and for me. The wakeup was difficult. Even though this is the third time for us it’s very difficult to wipe bloody tears from your child’s face. I was woozy. I’m not sure if it was nerves or of it was the chili but my head throbbed, my stomach churned and I had periodic chills.

It took about an hour for the anesthesia to wear off and for my boy to fully wake up. There was no moaning, no whining, no complaining. It was the opposite of how I would have behaved. He was anxious to get the IV out and opening his eyes was a challenge. He murmured a few things and repeatedly asked when he would get to see his sister.

eyes_after_strabismus_surgery

The post op room was initially understaffed and had me worried. Though everyone was nice I saw an attendant push waste into a trashcan and then grab a wheelchair with no hand washing in between. I saw the same lady come toward my son as he was waking up and I shooed her away. She wasn’t a nurse and I grew up in a home where medical malpractice was dinner table conversation. I know enough about how infections are transmitted and some of the most dire consequences. I’m certain that I’m overreacting, but better safe than sorry. At every turn I was asking, “is that a pediatric dose? Do you see his drug allergies?” It was exhausting, and I’m sure I exhausted them.

Somehow we made it home and it felt appropriate that the sun had set. Alexander and I watched TV and napped for a few hours and he ate clear liquids while I fought off waves of nausea.

We’re still waiting for Jane to come home. We both miss her and we won’t be a family until she walks through the door and sees her brother.