Our Blog

Poor guy

Sat, 31 Jul 2010 11:29:01 -0400

We have known this day would come, but hoped it wouldn’t be quite this soon.

Once yesterday and then again this morning, Colin was happily trying to use his walker, but got caught up and stuck in his tubing. He turned, shook the tube behind him and plopped down in a puddle of tears. He knows.

Of course he knows.

We have made ourselves feel better saying he won’t remember life before the oxygen leash. Sadly, we can’t magically give him a life without it.

Blubbering

Wed, 28 Jul 2010 09:03:36 -0400

There has been the occasional Oprah show, episodes of America’s Home Makeover, and pretty much all of Season 4 of The Wire that has had me crying in front of the TV. Last night however, I was a blubbering mess watching.... um... uh....Tony Robbins.

While everyone has sent good wishes on Colin’s hopeful prognosis, I have been feeling a little blue. Colin’s good prognosis is still a prognosis, and for me it has meant accepting that we are in this for the long haul.

Michael and are adept at getting through things: a miscarriage, 5 fertility treatments, a high risk pregnancy, premature birth, months in the hospital, Martin’s illness, two babies in different hospitals simultaneously, apnea monitors, sleepless nights. We put our heads together, make jokes, and barrel through while thinking about life on the other side.

However it’s been a lot over four years, and on some level we feel we’ve had our share.

The night before Colin first went into the hospital, we had been looking into where to spend our first summer vacation with the boys. Lakeside? Beach house? I assure you Pittsburgh was not on the list. As friends zip in and out of town for family trips we have been feeling trapped by the heat and our circumstances. There are so many limits on what we can and can’t do.

It’s not something I have talked much about, because I know things could have been worse. I should be grateful; I am grateful. Colin is happy, we see to that. But you want your children to thrive, you want to play at the beach, you want them to run around. Heck, you want them to walk.

As for me, I don’t want to work so hard for every trip up the stairs or out of the house. I don’t want to think and watch and worry all the time. It pains me to know that people who meet Colin first see the tubes and not the boy. It pains me to sort medical bills.

Enter reality TV.

The show featured a newlywed couple. On their wedding night in Mexico, the husband jumped into a swimming pool, broke his neck and became a partial quadriplegic. He is mostly confined to his house while the wife was cares for him, works, and quietly grieves the life she thought she would have.

The first thing Tony did was make them jump out of an airplane. Then the wife was sent away for ten days to a spa (where do I sign up?) while the husband was immersed into a rough rugby match with group of fierce wheelchair athletes, After a week the man’s whole family came to watch him play, get banged up and saw what he could do on his own.

Before the accident, the man had an off-road truck he had been slowly fixing and dreamt of driving. They finished the truck and rigged it for him, then sent him to the desert to drive it at top speed. The point of the show was to get this guy out of the house, and to realize that there aren’t any limits on their life. Modifications, yes, but no limitations. My new motto.

Now, if you tell anyone I got it from Tony Robbins, I will have to kill you.

Mamamamama....

Tue, 27 Jul 2010 22:50:11 -0400

We interrupt Martin’s full body rash and Colin’s poop explosion that required an immediate cannula/tube change to announce that mom has been named a Dramatist Guild Fellow for 2010-2011.

She was also accepted into the 2010-2012 Women’s Project Lab, has been invited as both an artistic advisor and ensemble writer for the newly-formed Theater 167, and will be workshopping her play The Electric Baby this fall in New York.

What does that all mean? It’s going to be a busy year boys!

For more details on mom’s new opportunities visit
www.szadravec.com

July photos

Tue, 27 Jul 2010 09:21:47 -0400

I posted all the photos for July. Most are from our trip to Pittsburgh Children’s Hospital, a.k.a How I spent my summer vacation.

Cranktastic

Mon, 26 Jul 2010 12:57:08 -0400

Martin is such an easy going kid, that when he gets sick (or cranky) it really throws us for a loop. He’s had four straight days of high fevers and irritability. A quick swipe of the mouth indicates that all the rest of his teeth have decided to come in at once. Poor kid. We miss the laughs, but even at his worst Martin is easier than most.

A couple of clowns

Fri, 23 Jul 2010 09:16:22 -0400

Not much going on with the high heat and humidity. Most days we just try to figure out when it might be cool enough to venture outside. Then we come back and decide who’s sporting the crazier clown curls that day.

Photo: Here Colin uses the sunlight to flaunt his ‘orange and curly’ advantage. However Martin pulls ahead using the one tuft on top with two tufts on the side technique along with a goofy expression.

Our friend oxygen

Tue, 20 Jul 2010 08:57:56 -0400

We are grateful for Colin’s new diagnosis. Of the rare pediatric lung diseases, this is a good one, but it’s still a rare pediatric lung disease, and with it comes the daily reminder that we’re not out of the woods yet.

One symptom of NEHI is fluctuating oxygen needs. Almost on cue, the week we headed to Pittsburgh our boy, who has only needed .5 liter for months, suddenly required a full liter to keep his stats up. Since arriving home we’ve had to bump it up to 1.5 liters, so he’ll sleep. They told us to expect fluctuations for no reason and to be very patient about getting off oxygen in the coming years... years?

Other chILD parents said we would come to see oxygen as our friend, which we have. Colin is certainly happier than when he couldn’t breathe. He eats, he’s active, he’s learning, and in that sense it’s our friend. But oxygen is also the friend that won’t leave, that gets in the way when you’re trying to do something simple, interrupts when you’re playing a game, and makes running a quick errand or walking across the room impossible at times.

Colin gets caught, stuck and pulled down by his tubes all day long. The person watching him often finds themselves ignoring the boy and just managing the tubes, the portable tank that is falling off your shoulder, or the water trap that Martin has taken apart and begun to eat. Outside, you chase Colin hunched on a 7’ tether like the owner of a small dog who’s taken off under a bush. Or worse, Colin gives up altogether and plants himself in the middle of the playground while other kids run past and stare.

Wrestling a toddler into pajamas is never easy, but some nights it feels impossible. Remember: the tube runs outside the pajamas but inside the sleepsack, down the back but off to one side. Oops, keep it away from that dirty diaper! When Colin is done, I pick up the squirrelly Martin and think, “Oh good, this one’s easy.” I won’t even get into the adhesive tape that rips Colin’s skin and gets caught in his hair.

It’s hard on Martin who longs to run and explore. It’s hard trying to find classes and places we can go that give the boys some normal experiences. One person can’t take the twins anywhere alone as Colin needs his own adult supervision.

Forgive us if we don’t feel thrilled about years of this. Our good friend oxygen is going to be around a long time, yet he’s not even chipping in on the increased energy bill. We hope our other friends know that although our diagnosis was good, life with a sick boy hasn’t changed much.

Yet.

Pittsburgh videos

Thu, 15 Jul 2010 08:08:58 -0400

Here is a quickly edited video of our week in Pittsburgh

http://vimeo.com/13353253

There’s no place like home

Sun, 11 Jul 2010 14:45:11 -0400

We’re home.

We did it, and before one more person says how amazing we are, we really need to thank the people who helped us this week. Every little bit made all of this so much easier for us, made us feel less alone, and helped us focus on Colin. Even more people offered help, and we’d like to thank you too. It means a lot.

My sister Sarah left her own son to come up for 4 days and take care of Martin, do laundry, be on-call for anything and just be a shoulder to lean on. She even slept one night on a drooping, broken sofa bed (I can’t believe we didn’t get a picture) before Ronald McDonald house switched it out for a new one.

This isn’t the first time she’s come through. She came when we moved, which was also the day Martin nearly died in the NICU. She came last summer just to help for a few days. She came this February when Colin was first admitted to the hospital and she drove to Pittsburgh and lived on cafeteria food and Trader Joe’s right along with us. She took Martin to the zoo/aquarium and patiently indulged him when he wanted nothing more than to open and close the bathroom door over and over.

Cammie P. also came along with Chloe the poodle. She had planned to stay the weekend, but just a couple hours before she arrived we received the news that Colin would be discharged the following day. She was already on her way, so she stayed the night, watched Martin for a few hours while we had our last conversation with Dr. Kurland and then turned around and went right back home. Thank you, Cammie.

Tammy and Devon, our go-to Pittsburgh team were so wonderful. Tammy made herself completely available to us and brought us milk and fruit our first day there. Her daughter Devon charmed Martin and served as our local babysitter. I can’t thank you guys enough.

Grandpa Harry pitched in and helped us with the mini-van rental. As anyone who’s ever tried to rent a vehicle in NYC knows, it ain’t cheap. Medical treatments, cat sitters, and vans, oh my! It will all work out in the end, but as the commercial goes - getting the diagnosis we needed: priceless.

Back home neighbors had loaned us coolers, extra booster seats, a single stroller, a second pack n play, and videos for the car. It was a huge help. Thank you Sally, Christine, Andrea and Angela.

The night we got home, Scott and Deanna delivered a fantastic homemade healthy dinner -Cajun spiced tilapia and vinegar slaw (so welcome after a week of cafeteria food).

And finally, a package was waiting for me at home. Someone anonymously sent me a pair of Ruby Slippers. Thank you. The witch is dead, and I’m wearing them around the house. I’d love to know who you are!

Doo dah day

Sat, 10 Jul 2010 22:10:54 -0400

We left the hospital today. Just 48 hours after surgery, Colin is on no pain medications, able to bathe, laughing... and got a breath of fresh air.

Next to the hospital is the beautiful Allegheny Cemetery with gorgeous old graves on rolling hills. Several famous people are buried there including Stephen Foster. Today was their annual Doo Dah Day Celebration, so we took the boys for a little outdoor concert and a ride in a horse drawn wagon.

Colin stood right up on mom’s lap so he could see the horses run and feel the wind on his face. He howled with joy as I wept behind him. It’s going to be a long road, but the kid’s going to make it. Doo-dah, doo-dah

Photo: Colin, in the wagon bets his money on the bob-tailed nag.

A new diagnosis

Fri, 9 Jul 2010 21:57:13 -0400

The biopsy results are in. Colin tested positive for NEHI (knee-hi), which is the best diagnosis we could have hoped for next to a clean bill of health. The basic run-down is that with NEHI Colin will likely be on oxygen for a long time - maybe one year, maybe three, maybe eight. It can’t be predicted. The good news is that although there is some scarring, there is no obliterated tissue. Colin won’t die from NEHI as patients seem to outgrow the disease.

They don’t know if NEHI remains in the lungs after recovery, because patients no longer in need of oxygen have not gone back for a second lung biopsy. NEHI has only been described since 2006, and Colin’s case will be studied with the other NEHI children in the chILD network, to help better understand the disease, and help treat children in the future.

We’re in much the same boat in that we will continue to monitor his oxygen needs which may fluctuate rather than simply lower themselves. We also will need to keep him healthy and watch ourselves during flu season. That said, there is no prescribed course of steroids or antibiotics for him. For now it is oxygen and yodeling in public which he seems to like to do).

Mom’s bet was on NEHI when we came to Pittsburgh, but according to Dr. Kurland two things didn’t fit the basic profile - his original CT scan from New York did not show a clear picture of NEHI (but may have been flawed due to the size of the cut they used in the picture-taking), and Colin does not show failure-to-thrive. Many children with NEHI don’t gain weight, won’t eat or need a G-tube to feed. What can I say, I make a mean toddler breakfast.

He does however fit the rest of the profile - retains CO2, needs oxygen, breathes quickly with flared nostrils, and now we have the pathology to back it up.

It was a good day. Sad to think he may spend years on oxygen? Yes, but we were potentially looking at that anyway. The fact that there’s a chance he will overcome and thrive past this, is wonderful, wonderful news. We’ll just have to keep our thoughts and minds on that goal.

Pre-op

Thu, 8 Jul 2010 12:14:15 -0400

This is the playroom on the pre-op wing, which is not the playroom in the waiting areas, or one of the four child-life playrooms on the recovery floors. (not including the children’s library)

You know how you are told not to eat anything starting at six a.m., then arrive on time for a procedure only to find out there will be a two hour delay (ours was 2 and a half)? Well, after getting weighed and changed, this is where Colin got to spend a few hours, not noticing that he was hungry and waiting and missing a nap.

Bronchoscopy and Biopsy

Thu, 8 Jul 2010 11:56:25 -0400

Since the Surfactant test came back negative, Dr. Kurland feels more strongly than ever that he needs a lot more tests, therefore he added a flexible bronchoscope with lavage to the biopsy today. (That’s the procedure Colin had back in February that found the Parainfluenza virus present in his lungs). Dr. Kurland would like to see if Parainfluenza is still lingering, so the wash will bring up fluids and cells that can be analyzed for that as well as other things.

The bronchoscopy lavage returned enough samples to run all the tests needed, plus extra material that will be frozen and used for research testing. It feels good to be able to help the research cause at the same time we are looking for answers.

As for the biopsy, the plan was to make three incisions (one for a camera and two for biopsy material) then possibly insert a chest tube at the end for drainage. Mom got to put on a paper suit and go into the operating room, and hold Colin until he was put under.

After, they made the three incisions, and were able to take tissue samples from all three places. The outside of Colin’s lungs look unremarkable (which means good!) and the doctor did not need to insert a chest tube, which is the most painful part of it all. No catheter for pain meds was needed either. Go Colin!

Our little man woke and drank, then had formula, then food. (he hadn’t eaten since six a.m. and it was now 5 p.m.) Dad stayed the night with him in the luxury private room. It has a double bed, a large clean bathroom with shower, a proper chest of drawers and closet as well as ... room service.

With such a fantastic team, and amazing facility, Michael and I had to remind ourselves that although the surgery was successful, the real news is what the tests will show. It’s easy to get lulled into thinking Colin is better since everyone and everything is so positive. The truth is, we are just at the beginning. We will begin to get answers Friday, and then more in the days and weeks to come.

Photo: Colin post-op, just getting O2 blown at him. No cannula needed.

PFT (pretty frightening things)

Wed, 7 Jul 2010 15:59:34 -0400

Today Colin was sedated and had a pulmonary function test. The good news is that his lungs overall are the right size for his body, the sad part is that they function at about 54% of capacity. He retains CO2 (although his last blood gas was great) which means that something prevents oxygen from getting to the blood. Now they know how much, unfortunately, they still don’t know why.

Most of what this test revealed seemed to align with something call SP-C, surfactant protein C which can be progressive and could require a lung transplant in the future. In order to take in the news, I felt myself separate from my body. I can’t understand how a boy this vibrant and full of energy might receive a prognosis that could involve a lung transplant and possibly death. Even here in Pittsburgh our team has only seen about 10-15 patients with this disease, there are no proven courses of treatment.

It was a grim day. We went home tired and deflated, as we waited for the rush results of some blood work from a genetic a lab in California that would tell us definitely if Colin had this deficiency.  
Around 8 p.m. we learned that the test was negative, (a huge relief) but the doctors are back to square one, and the open lung biopsy is a go for tomorrow. We are still looking, only now we are looking at some very rare options.

The kid - well, he was a champ. DId not fuss being off food for hours and hours, and came out of the procedure quite drunk and loopy. Home for dinner, then off food again at midnight for pre-op.

In good hands

Wed, 7 Jul 2010 11:52:07 -0400

This is Colin in the hands of our wonderful surgeon, Dr. Burns on Tuesday. We had a long day of appointments that day, so Colin was, um, a little out of it, by the time we met with him. Still our little trooper cooperated for his examination.

Dr. Burns is a wonderful man, smart, even keel, communicative, and very good with children, even sleeping ones. The surgery is on for tomorrow, and we feel very comfortable about it.

The one good thing Dr. Gloom ever did was get us the heck out of New York for these procedures.