Thursday, February 25, 2010


The Problem:

Aspiration syndromes include all conditions in which foreign substances are inhaled into the lungs. Most commonly, aspiration syndromes involve oral or gastric contents associated with gastroesophageal reflux (GER), swallowing dysfunction, neurological disorders, and structural abnormalities.


Chronic lung disease may develop from repeated aspiration of refluxate.
Pulmonary fibrosis may occur over time secondary to repeated aspiration of small volumes of gastric secretions, promoting a progressive fibrotic pulmonary response.
Chronic bronchitis and bronchiectasis are also recognized complications.

The Solution:

Dear Parent/Guardian,

Dermot Sullivan, has been scheduled for a procedure at Children's Minneapolis with Dr. XXXXXXX on 03/01/2010 for their PEG Insert Standard G Tube. Here are the items to be done to prepare for your child's procedure:

HISTORY AND PHYSICAL EXAM: This must be completed within 7 days of your child's procedure. (This includes the day of appointment.) Please arrange this between 02/23/2010 and 03/01/2010. You will need to see your child's primary physician or pediatrician for this exam. The most important piece to this step is that you HAND CARRY a complete History and Physical examination from your primary physician/pediatrician's office to check in at the above medical facility.

DIET RESTRICTIONS: You will need to carefully monitor and follow these restrictions to your child's diet.
Clear Liquids until: 8:30 AM (2 hours prior to arrival) your child may have clear liquids. Please see the Clear Liquid Diet Guidelines.
Milk products and formula until: 4:30 AM (6 hours prior to arrival)
Solids until: 2:30 AM (8 hours prior to arrival)
Special Instructions: 2/24 Office Visit okay for Pre-Op

To meet energy needs, please include liquids that both contain sugar as well as those without. If your child is a diabetic, consult your physician for a diabetic meal plan.
Please call our office if you have any questions:

Clear Liquid Diet Guidelines

Allowed Not Allowed
Water Dairy Products (milk, cheese, etc)
Broth (no noodles) Cream Soups
Coffee Meat, Fish, Fowl
Tea, regular or decaf Red or purple juices, pop
Carbonated beverages Juice with pulp (orange, tomato, etc)
Gatorade (not red or purple) Bread, pasta, rice, potatoes
Flavored Gelatin
Plain juice popsicles Cereal
Plain hard candy Vegetables, fruits
Pedialyte Desserts (cakes, cookies)
Strained fruit juices (no pulp) Soft candy (chocolate, candy bars)
Honey, sugar, salt, pepper Nuts, seeds, popcorn

Please Note:
If you have Diabetes, please ask your regular doctor for diet and medication restrictions.
Oral laxatives may cause mild cramping, bloating or nausea. Always stay near a toilet when using laxatives.
Your child may have nothing by mouth for three hours prior to the procedure. Your child may have nothing to eat or drink after on .

Morning Medications: If medication is taken in the morning, please take 3 hours prior or hold mediation until after procedure.

REGISTERING: Please arrive at the above mentioned facility at 10:30 AM, your procedure will start at 12:00 PM.

GOING HOME: Your child may require between 1 to 4 hours to recover from sedation (if sedation is required) used during the procedure, please add this to your expected time to be at Children's. After your child's physician(s) feel that he/she will be allowed to go home.

If you have any questions or need to reschedule, please feel free to call the office and press option number 1 for scheduling.

Exit Scheduler

Tuesday, February 23, 2010

Fourth time

Just as I crossed the last thing off my grocery list, I heard a muffled chime from my purse. I thought to myself, I wonder if its Dermot's school. Not really believing it was, but teacher Jan was on the other end of the line.

"Hi Sue, Laurie has administered the Diastat for Dermot", she said with a tinge of sadness in her voice. "Okay, I'll be right there" I said. I looked down at my full cart of much needed groceries and pushed them to the register. One part of me wanted to continue and check out as if nothing was happening, the other, wiser part said "get the hell out of here". Another abadoned cart at the grocery store.

This time I call Joe, "I'll meet you there" he says. Three stoplights later and a quick jaunt on the highway and I'm there. Wiped the tears away and ask the receptionist for admittance to the special education wing of the school. I walk briskly to Dermot's classroom. The other little boys are having circle time with the student teacher and look over quickly as I arrive, then they're back to their lesson. Dermot is lying limp in the school nurse's lap, separated from the other kids by a partition. He's still seizing, fifteen minutes after the Diastat is given. The nurse decides to call 911. Is this really happening? I think to myself, yep it is.

Dermot's eyes are open, mouth open, tongue stuck to the roof of his mouth. He's breathing, that's good, no response to stimulis (mom kissing him, dad calling his name over and over, etc.). A police officer gets there first, I think it's proctocol. EMT's are not far behind. They check his vitals, glucose, all are within normal range. Finally Dermot starts moving his hand, he searches for my hand. He's still not all there. Then I feel his stomach muscles contract. He wants to sit up. Absolutely Dermot! Let me help you up. Joe decides we don't need to go to the hospital, I didn't know what to do. Maybe that's why I asked Joe to meet me there this time. Thanks Joe, thank you for being there.

As I write this, Dermot and Joe are at the hospital lab getting blood drawn to make sure his drug levels are all in therapeutic range. Then we'll call the neurologist again. They'll tell us to wait and see, then give us a different drug to add to the growing list.

Tomorrow we're off to the gastroenterologist to talk about getting Dermot a feeding tube, but that's tomorrow. I'll write about that tomorrow...

Tuesday, February 2, 2010

Full glass of water

I'm a full glass of water. Don't tip me, don't bump me, and please don't add anything else to my glass. If you leave me alone I won't spill anything, I won't get anyone wet and I won't go anywhere.

Occasionally when people ask me how I'm doing. My response is "I'm a full glass of water". I walk around my daily life functioning with a full head and a full heart.

My head is full of tasks: grocery shopping, remember to send the order form in Owen's backpack, remember to set the DVR for LOST, call Jenn, Tanja, Dad, Pat, Rebecca and the Toyota service guy about some alarming recall? Get Dermot's prescription refilled, go to the hardware store for a toilet thing-a-ma-jingy, make cookies, fold the laundry, decide what's for dinner, Find a new physical therapist for Dermot, confirm his eye appointment, schedule flight to Arizona. Empty the dishwasher, fill the dishwasher, vacuum the dog hair off the living room couch...

My heart is full of grief and apathy: Wake up, get the meds ready for Dermot-pulimcort, albuterol, prevacid, then get the milk in his cup (rice milk because we think he's lactose intolerant) add the packet of thickener (Dermot aspirates liquids so we need to thicken all his fluids), sit down and hold Dermot like an infant to feed him his milk, burp Dermot like an infant because he's not strong enough to burp without help. Bring Dermot to kitchen, place gently and correctly in his Leckey Mygo chair, secure the chest harness and waist strap. Prepare his breakfast of soy yogurt and banana that has been carefully smashed with a fork, don't forget his waterproof bib and his therapeutic "maroon" spoon. Wait you forgot his other meds: Topamax, Keppra, Carnitine and Depakote...five pills and one syringe. After breakfast, roll Dermot into the living room, put socks on, fit Dermot with his SMO ankle supports, lift him out of his chair, very carefully lower him down into the stander and begin securing him, foot pads, knees straps, hip strap, chest harness. Ready, 1, 2, 3 up! Find a toy of interest for his tray. Sit with him for 30 minutes...done. Release the straps and harness, carefully lift Dermot out of the stander, gently place him on the end of the couch, take off the shoes and SMO's. Undress Dermot, then dress Dermot in his school clothes. Comfortable shirt and sweatpants with sneakers. Don't forget his glasses. Get his jacket on, be sure to start with his left arm because otherwise his arms are too tightened up to stretch out through his sleeves. Go to the garage, open the van door, grab the remote for the mechanical seat, adjust it to the correct position, go back to living room get Dermot, take his glasses off before picking him up, bring to the van, place him in the seat, all buckled in, put his glasses back on, move the seat back into the van, close the door. Drive to school, turn into the parking lot, adjust the disability parking sign on my mirror, park the car. Get out of the van, lift the 53 pound Otto Bock Kimba stroller out of the van, prepare the straps, lower Dermot's seat down and out of the van. Lift him into the stroller, secure the straps and harness, kiss him good bye and watch the teacher roll him into the classroom. Two and a half hours of down time begins now.

So much of my day is filled with tasks, all day long. Tasks I would have never imagined ever doing, I do these tasks everyday and because I do them every day I forget sometimes to feel anything about my day. It is moments like right now, when the house is quiet and I'm up WAY too late that I can let those feelings creep in for a while, "pour out some the water" so to speak so that when I wake up tomorrow and do it all over again, it seems normal to me. I won't think about how un-normal my life with Dermot really is. I think that's why "the guy upstairs" keeps parents like me so busy for the first years of our new journey, so we don't feel all of the pain and all of the anguish too abruptly. I wouldn't be able to function and do all of the things I need to do to be Dermot's mom. I'm grateful for that, I'm also grateful for moments like right now. Quiet house, not so quiet heart.