Friday, May 29, 2009

Pics & Thanks!

Ethan at Baltimore's Port Discovery on May 23, 2009

Ethan playing at Ronald McDonald House 5/23/09

Ethan and I are driving to Altoona, PA tomorrow to meet up with Mark, Emma, Evan and to visit Obie & Ray (Mark's parents). It will be nice to see them!

I need a mental break from the medical and feeding stuff, so I'd like to share a few things for which I am thankful:

My wonderful family.

Friends like Denise FitzGerald who are always there to step in to help. Thank you my little angel.

Mark, for making me take his car, getting new tires, and doing all the background work for this trip.

The in-dash GPS system in Mark's car for making my trip less stressful and for saying in that soft, comforting female voice 'Take the next U turn, if possible.' instead of saying'Turn around, you lugnut, I just gave you two warnings for that left turn you just missed!'

The HR Benefit folks at Convergys for taking the initiative to push to get Ethan into this program. We wouldn't be here without you.

The valet staff at Kennedy Krieger for knowing I'd need a little TLC at the end of the day last Thursday. The valet had my car ready when we came out (without us even asking!), he rolled the windows down so the car would be cool, and he whisked Ethan and me right in when we came out from a most stressful day.

The volunteers who come to the Ronald McDonald house every night to make us dinner. I had no idea how much that would mean. It means the world and brings tears to my eyes every night.

The other kids here at the Ronald McDonald house for loving on Ethan so much. They have health issues beyond anything I could bear and they truly care about how Ethan is doing and happily greet him when we get back to the house at night. We've met families from Kuwait, Turkey, Wisconsin, New Hampshire, South Carolina, Texas and New York. It's truly a small world.

The High School group who came to visit the kids at Kennedy Krieger yesterday. They spent the school year selling bracelets to raise money to buy toys for our kids. Ethan loves his Madagascar 2 DVD! Funny, I always thought of myself as a 'giver'. It is humbling and touching to be on the receiving end.

My departed loved ones who send us pennies from heaven every time Ethan is in the hospital. I know you are thinking of us, wherever you are!

Have a wonderful weekend!
Molly & Ethan

Thursday, May 28, 2009

Picture of a feeding and 'food for thought'

Here's Ethan in a feeding session.
We had our feeding team meeting this morning. It was interesting and gave Mark and I a LOT to think about. We received a status from each area, which was nice, even though we get regular updates from the staff throughout the day.
We suspected Ethan would be a 'tough case' because of how much effort we have put into feeding him the past 6 years. Besides, if we came all this way, and he was a push over, we would totally look like loser parents! Well, it's one thing to suspect he is a 'tough case' and another thing to be told it by those who know. I got all teary eyed in the's a mom thing.
The director of the feeding program is now Ethan's case manager. Ethan appears to have 'shut down' (that's psycho lingo for his eerie calmness during feedings). Based on the experience of the folks in the program, kids who are purely stubborn have good days and bad days, not a constant hours long refusal like Ethan has shown. Experience has also shown that kids who are adamant about refusal are likely doing so to protect themselves due to an underlying medical issue.
We know Ethan has several medical issues that could potentially cause his feeding issues, we just don't know which one is the major factor or if his refusal is a result of a combination of all of them. So we need to check off each issue by addressing the factors we can control. Because his time here in the program has also led him to refuse food and drink in the 'off hours' he is getting dehydrated and losing weight. An NG tube was discussed (a feeding tube that goes down the nose to the stomach) but was rejected because of Ethan's small airway. He has enough room to breath now, thanks to the airway reconstruction, but an NG tube would block a portion of the airway-not a good thing.
The other option is to surgically install a G tube, a feeding tube port in his belly which would deliver food and medication directly into his stomach. It's not 100% final, but very likely that Ethan will get a G tube within the next few weeks. This would also require Ethan to stay at the hospital 24 hours per day for a while. Lots of kids in the program have G tubes, so it is not a huge deal, it's just something we hoped to avoid by going through the program. And something we have to work out with insurance, since we are on such a tight insurance leash right now. Hopefully our insurance would not make Ethan go back to Cincinnati for this relatively minor procedure.
The other thing we are lined up for is the cardio evaluation to check on his 'rogue' artery. Officially it is called an aberrent right subclavian artery, but I prefer to use the more casual moniker...rogue. This artery is attached in the wrong place on his heart and is beating into his esophagus, creating a little ledge in his food shoot with every heartbeat. Sounds like a 'rogue artery' to me. A Johns Hopkins cardio doc will check this out on June 3rd specifically to answer the question of whether this is keeping him from feeding comfortably. CCHMC cardio docs took a peek at it last year, but not necessarily with the feeding impact in mind.
Another concern is whether Ethan is refusing to feed to protect his airway. There is a chance, which an updated, more thorough, swallow study would confirm or deny, that his floppy eppiglotis, combined with the lazered hole in his vocal cords, could allow food to compromise his airway. (Wow, that was quite a sentence!) The thought is that he doesn't eat because he doesn't want to accidentally breathe food into his lungs. Unfortunately, Ethan needs to be able to actually take in food with barium to do a swallow study. So that theory is on hold for now. I personally think this is the least likely scenario.
So, we have backed off the stringent feeding protocol in an effort to reduce Ethan's stress about eating, and are waiting for the decision/scheduling/insurance approvals needed to take the next step.
We miss you all...over and out!
Molly & Ethan

Wednesday, May 27, 2009

I'll come right out and say it. Being the sole caretaker 24/7 for Ethan has been much harder than I imagined it would be. Those of you who were around when Evan was little and was a 'runner' will understand. Mark and I have been blessed with boys who LOVE to run away...ALL the time. Evan grew out of it by the time he was 5, but Ethan seems to cling to the whole love of running away thing. Here are a few examples:

Gotta love automatic doors...NOT!

Kennedy Krieger and Ronald McDonald House, like most places nowadays, are sprinkled with these little convenient 'handicapped accessible' door opening buttons. Ethan LOVES these because they make running away so much more fun than if he actually had to open a door. Last Friday night Ethan hit the one at the front door of RMH just as a wheelchair was coming through. Ethan squeezed between the wheelchair and the door, I did not, so by the time I caught him he was halfway down the block running with a huge grin on his face.

Last week at KKI, I was in the handicapped stall of the ladies room, doin' my business, with one hand on runner boy. I let go for a millisecond and runner boy was out the stall door, hit the button, and was running down the hall laughing all the way. I got my pants up, but not zipped or belted and ran down the hall, right into an old guy who was laughing his head off. I was mortified....

..or so I thought...

Today, I used the handy 'Family Friendly' bathroom. It is one open room, no stall, has a dang door button, but also a deadbolt. I thought I was safe....nooooooooo...the dang deadbolt is child accessible. ???? I'm on the throne and Ethan heads for the button....I'm, no, no, Ethan please don't try that. It takes him all of 2 seconds to remember the deadbolt. I'm still....yelling now....NO luck, deadbolt...OPEN...door button...PUSHED. OMG. The door opens WIDE, (no stall, remember) and at the speed of a half dead slug....slowly...oh so slooooowwwly opens WIDE, WIDE, WIDE (I'm still on the throne...Ethan is gone...hallway populated...I'm sure I'm so red, I'm purple.) and then the door closes....slowly...oh so the speed of a half dead slug. I wasn't really sure I wanted to catch Ethan by that time.

But he's just getting me back for bringing him to feeding therapy...

I gave you an overview of therapy last week, but I don't think I mentioned how hard it is to watch. I'm in a soundproof viewing booth watching his session through a one-way mirror. His feeding therapist is in the room with 2 to 3 assistants. The therapist feeds, the assistants either enter data on a laptop or help 'block' (hold Ethan's hands when he fights or holds him when he tries to bang his can get rough.)

Three quarters of the way through last Thursday's noon session, Ethan stopped screaming and fighting and went limp. I cried because, well, because I'm his mom and for some reason, it was hard, but easier to see him cry than to see him go limp. I expected him to cry, I did not expect him to go limp. Every feeding since then he has been eerily calm (limp) and he keeps his teeth clenched. When he used to fight, he would immediately spit out any food that got into his mouth, with teeth clenched, the food doesn't even get into his mouth.

Today they tried a classic dentist move where the therapist will stick a finger into his mouth along the side of his teeth until he opens his mouth. It worked at today's lunch feeding because the food (pretzel, a favorite food item) got into his mouth....progress, but he REFUSED to chew or swallow. So he sat for half an hour with the food in his mouth not chewing not swallowing. Did I mention that a pretzel is one of his absolute FAVORITE foods....can you say 'Control'?

By dinner tonight he had 'outsmarted' that technique by developing an ability to go so limp he looked like he was sleeping...with the therapist's finger in his mouth. One hour. No chews no swallows.

So no calories ingested yet this week at therapy, although I am allowed to feed him after hours. He has lost 1 to 1.5 pounds this week and we're having a team meeting tomorrow morning to discuss whether he will need an NG tube because he's very low on fluids. No carido consult or swallow study yet. His NG tube history is poor...I think he has pulled them out each time he's had them in the past.

So, that's the fun. Miss you all, bet you wish you were here...not!
Molly & Ethan

Friday, May 22, 2009

Since I last wrote

Ok, it's been a while since I wrote so I'll give you a long winded update:


Ethan needed this feeding program.
Ethan's doctors and therapists said Ethan needed this feeding program.
Ethan's insurance company did not want to pay for this feeding program.
Mark's employer told the insurance to pay for this feeding program.
We are now at this feeding program and
We are very glad to be here because it has been 3 years since we learned Ethan needed the program and five months since we thought we were leaving for the program.

Our trip to Baltimore, MD:

Ethan and I left Cincinnati last Saturday morning (5/16/09) and drove all the way through to Baltimore. We had great weather, little traffic and Ethan was good on the drive. We stayed in big puffy, cozy beds at the Columbia, MD Sheraton on Saturday night. Sunday through Tuesday nights were spent at cousin Mary's house in Columbia. Totally cute house! Thank you Mary!

We, quite unexpectedly, got into the Baltimore Ronald McDonald House on Wednesday. We throught it would take weeks, so this was a nice surprise. We are now settled in and our address for the next 8 weeks is

Ronald McDonald House
635 West Lexington Street
Room 206
Baltimore, MD 21201

Three moves in 5 days took their toll, but we're settled now.

The Feeding Program:

Ethan started into the feeding program on Monday, 5/18. The feeding program is an 'inpatient' day treatment program. Ethan is admitted to the Kennedy Krieger Institute, part of the Johns Hopkins Medical Campus, but we only have to be there all day Monday through Friday for 8 weeks.

The program is an ABA (Applied Behavior Analysis) based intensive feeding program. Ethan takes 3 one hour meals per day here and has Speech Therapy, Occupational Therapy, Behavior Therapy, and Playroom 'Therapy' between his meal times. The meal times are actually the most intensive therapy sessions of all.

Ethan eats food, is growing, but is considered to have a severe feeding disorder because he eats a very limited diet (maybe 10 different food items) and is extremely adverse to any new food. Read that as 'Ethan fights, screams, cries, gags, and spits when presented with a new food or sometimes even with a known food item.' Mealtimes at the O'Briens are not much fun.

This program looks at all the reasons why Ethan has trouble eating. As far as we know, his sensory processing disorder (doesn't like to touch several textures, may have trouble with some smells), cognitive delays (He's 6 but thinks like a 2-3 year old), significant medical history (lots of airway surgeries & procedures), oral dysphagia (mouth muscles don't work like they should), esophageal dysphagia (a rouge artery is pushing into his esophagus), and some other issues I can't recall at the moment, are all contributing to his eating issues. The fact that he is mostly non-verbal (he doesn't talk) hinders our knowledge of WHY.

So far in the program we've covered his typical feeding habits, experimented with swapping out some known foods for unknown foods, (I did the feeding) and started into the intensive feeding therapy (trained specialists do the feeding). Ethan has moved from screaming and fighting, crying and gagging for an hour straight at a meal to an eerie calmness where he merely stares the feeding therapist down with clenched teeth for an hour. I believe his caloric intake (they measure EVERYTHING) is something like 15 calories total for the week of intensive feeding therapy. Considering that I can take in 15 calories by merely smelling a food, you get the idea.

The Johns Hopkins cardio docs here are also taking a closer look at the rogue artery that is pushing into this esophagus to find out how much of an impact this is having on his feeding. The Kennedy Krieger therapists will also being performing a new swallow study (it's an xray thing) to find out if his airway is being fully protected when he swallows.

We miss home and everyone there! Take care and I'll write more later. Mark gave me a new camera for Mom's Day so I'll take some pics too.

See you soon!
Molly & Ethan