Sorry for the stretch in between updates.  Where to start?  First, Trey is at about 75% healthy and he’s sleeping in the other room right now!  I brought him back to the hotel from the hospital today, with lots of meds and orders but he’s here.  He’s exhausted – hospitals are no place to rest or recouperate. 

He had a rough few days.  He narrowly avoided a blood transfusion, had partial collapses in both lungs and spent the entire weekend zonked out on morphine.  On Monday, when he was awake for more than 10 minutes, I was doing my silliest everything to get a little smile.  He stared at me like I escaped from “One Flew Over the Cookoos Nest”and then finally rolled over gave me his back!  Whatever, Trey…seriously, I was really sad that he was so miserable but that was pretty funny….a definitive “get the hell away from me statement” from a 3-year-old…gotta love it.

Despite all of that, they were prepared to discharge him on Monday because “surgically he’s fine”.  Even the nurses agreed that he wasn’t ready to go and told me to fight for him to stay. So after a very loud exchange with the attending physician, during which I used a few well-placed phrases like “is this how you treat all of the black families here?”, “My Dad’s a lawyer and his best friend’s a judge”, “I know the Pastor at Obama’s church”, “go get your boss’ boss”, “I might be tired but I’m not stupid.  I can see what’s going on here”…Somehow all of that caused the nonsense to stop and Trey stayed.  By the way, feel free to use those phrases in any situation that’s not going your way – at work, at any retail establishment, restaurants with poor service, in hospitals – it doesn’t even matter what race you are! 

Tuesday, when I came in, Trey had a HUGE smile on his face and was clearly on the mend. He let me hold him for the first time since the surgery so we watched about 6 hours of Discovery Channel, both equally riveted by “America’s Deadliest Catch” and did you know that baboons eat small animals like rabbits???  What the hell?  Anyway, when I came in this morning, he was good to go and so we went…

I will not bore you with the insurance craziness that has gone on over the last few days but I’ll share one thing that a doctor said to me when Trey was recommended discharged on Monday, “it’s so much cheaper for you if he goes home.  Do you know how much this hospital bill’s going to cost you? You can’t afford this.”  I just said “Do you know how expensive it’s going to be for you, your colleagues, Children’s Hospital, Blue Cross Blue Shield and everybody related to all of you if I sue because you prematurely discharged a baby on a vent that just had major surgery…so you could save me some money?”.  Cricket cricket.

I want you all to be the first to know that my next book will be called “Wow.  You Have To Work Really Hard to Be This Stupid:  The People In America’s Healthcare System”. 

So Trey’s back in the hospital on Monday for the second part of this procedure.  I expect him to come out on Tuesday.  In the meantime, I’m going to take him for a walk to meet some of the people here…it will remind him to brush his teeth at least 2x a day or he’ll lose them; always eat healthy so you don’t have to walk sideways through doors; he’ll learn that McDonald’s is not considered a nice, sit-down restaurant; learning how to read is not optional; and neither is learning how to speak.

Will check in!

Love,

Tami

Quick note from Cincinnati.  We had a drama-free flight from Newark, NJ to Cincinnati yesterday, except for the massive amount of turbulence…you feel everything in those little planes (3 seats plus Trey’s gurney).  The soothing bumping and altitude dropping (and me going “ah..is this normal?”) put Trey right to sleep.  I was looking for a flight attendant for a drink!  Alas, nobody but Trey, the 2 pilots, the 2 air medics and me.  Drink?  Cricket cricket.  Nerves…rickety rickety

Trey was in surgery today for 6 hours.  The surgeons removed part of one of his ribs (anatomy lesson to follow at a later date) to create a new airway for him.  They said the surgery went as expected but won’t be able to give any sort of positive/definitive info for 3 weeks, when the area begins healing and they remove the stint.

Trey is heavily drugged for the pain.  He opened his eyes long enough to look at me as if to say “what the  &&^%$#@$  ?”  I don’t blame him.  This is all very surreal.  He got a pretty high fever an hour after the surgery and is retaining water.  His respiratory and heart rate are significantly above normal but no one will get concerned unless the situation lasts 24 hours…so we’ll see what’s what tomorrow night. 

I was able to Skype with the kids tonight from the hospital room so they got a look at Trey and we all felt better being connected if only through a webcam and a laptop…gotta love technology.

Other than being sleep-deprived, food-deprived (brown gravy on EVERYTHING) and east coast-deprived, I’m well and keeping the faith that this is the beginning of the last leg of a very long journey.  Trey still has a few other issues that need to be dealt with but nothing nearly as significant as this one. 

Thought for the day – every day should be Mother’s Day!  We just do what we have to do for those we love the most no matter what.  I met a mom today who has a 13-month-old daughter (full-term, no issues) who was born with no ribs and a spine that’s missing the majority of its vertebrae.  That means she can never be upright, breath normally or walk.  The mom had come from working an 18 hour shift and we met in the waiting room while I was waiting for the OK to see Trey after his surgery.  I told her my story first and she got very emotional for me.  Then she told me hers and I felt sad and foolish. Despite all I’ve gone through, I’ll have 4 healthy kids eventually.  She won’t.

No matter how bad our situation might seem, someone else’s is always worse.  Be grateful for your time here; your connections; your blessings – live life in a way that honors the opportunity to simple be here.  Do what you need to do, want to do and are compelled to do right now.  Tomorrow is not guaranteed.

Thanks for the well wishes and calls.  Will try and update in the next day or so.

By the way, I told that mom that the doctors are just men and women.  They aren’t God and they aren’t in charge of the Master Plan.  Keep the faith.

Love,

Tami

Hi Everyone,

Sorry for the impersonal email but there’s just not enough hours in the day to reach out to everyone individually!

As you know, I’ve been working with Trey’s medical team to wean him off of his ventilator and get rid of his trach.  The local docs finally referred me to Cincinnati Children’s Hospital where I took him in May.  After a battery of tests and hours of meetings with various specialists, we found out good news and bad news – but it’s all good info. 

The good news is that Trey’s lungs are bad but not as bad as we thought.  They are healing and have demonstrated that they’re stronger and work better than we’d been led to believe. We’ve been taking him off of the ventilator for an hour a day and he’s done great!  Within a year, we should be able to wean him down to only needing the vent at night – very exciting!

The bad news is that Trey has no upper airway.  Airways are several inches in diameter to allow airflow into our lungs.  Trey’s airway is about half the size of the opening of a straw.  This explains why the situation becomes critical when his trach comes out.

I’m taking Trey back to Cincin. tomorrow where he’ll have airway reconstruction surgery on Thursday.  This is a very delicate procedure where they take cartiledge from his rib and create a new airway for him.  Trey will be in the hospital for about 2 weeks and then we need to go back every 5 days or so for additional testing.  We’ll be in Cincinnati until early September.  After that, we’ll go back every 6-12 weeks.  Yeeha! J

I’ll have my cell and will be checking email.  I’ll send a note within a few days of the surgery to let everyone know how he’s healing.  I’ll be staying at a long-term stay hotel.  I’m also set up for Skype if you’re familiar with that.

The hardest part just might be not seeing the other kids for almost a month!

I’m not at the freaking out yet but probably within the next 8 hours! In the end, it’s all good! Having a kid with no equipment, getting the nurses out of my house and not having intimate relationships with Trey’s docs will be a welcome change!  If all goes well, we’re about 9 months from that.

Send your thoughts and prayers.  Talk to you soon.

Love,

Tami