I Got Skillz


Could this be me?

In my younger days, I remember loving the Cherry Ames book series.  She was this very cool nurse who also solved mysteries.  Sweet, a detective and a nurse!  To this day, a good mystery will hold my attention, but medical stuff doesn’t.   Sitting at a lunch table full of nurses talking about how good it is to feel the vein and finally get the needle in there made me a little sick to my stomach.  So who in a million years would ever think that I would be so proud of my new nursing skills……certainly not me or anyone who knew me in high school or college.


But life throws things at you and you deal, right?  When my brother was on hospice care for A.I.D.S. at our house, my mom and I divided up the nursing duties.  She cooked him delicious meals that he would eat when nothing else tempted his appetite.  I was in charge of dispensing meds.  It was pretty easy, I just had to count them out and make sure he  took the right ones at the right time. And then I would hook him up to his port and give him his heavy duty antibiotics for the M.R.S.A. he had contracted post appendectomy surgery.  He was such an easy patient, always so nice, even when he was in pain.  So, I had a little home nursing skill before Darling Boy came to town.


And now I can do all these things with a g-tube.  Today I cleaned a clog with some soda because my nurse friends told me that was a cheat that they used in the hospital.  Thanks, ladies!!  And I can give him feeds with the pump or the syringe.  


The only thing I was really freaking out about was what would happen if the tube got pulled on.  Darling Boy loves to pull on things: strings on his sweatpants, his shirt or pants, and you guessed it, the tube that now hangs out of his stomach.  Actually, he pulled it enough that he dislodged the bar that is flush to his stomach to the point that the doctor had to fix it.   I learned how to unsnap the doohickey and place it flush against his stomach if it happened again.


And it did. ON.THE. RIDE.HOME.FROM.THE. HOSPITAL!  D.B. is like a ninja that way, whatever you don’t want him to pull on or knock over, that he will. He is very quick and very strong.  Just because he doesn’t walk, doesn’t mean he doesn’t move.  And the boy has some skills.  Especially the skill of pulling on things on or near his body.  


So, I get home that night and felt too tired and edgy to deal with it.  So was D.B., neither of us really slept after 4 hours of doctors’ appointments ending in an x-ray. The next day,  I attempted to disconnect the doohickey  and slide the tube back into his stomach.  Yeah, in a couple hours it was out again.  That night, as I was tossing and turning ( did I mention my anxiety?)  I figured I would call the hospital and see what they had to say.  Either I would have to go to the e.r. (it was the weekend) or I would go in for a visit on Monday.


The g.i. doctor called me back and explained in very specific detail how to feel the tube tug inside his stomach and then inch the doohickey down to his tummy, not to pull the tube as I had been doing.  We agreed that if I wasn’t able to do this, I could get an appointment on Monday.  Now, to be fair, the doctor who showed me how to do this had no time to explain because Darling Boy was thrashing around the table and screaming loudly while he was showing me how to do this wondrous thing.  Well, Lovely Husband came back from errands and I tried to fix the doohickey just as the weekend doctor explained.  I felt the little tug and I slowly moved the white piece back towards his belly. Voila,  everything was back in place.


So, if anyone could find a mystery for me to solve,  maybe I could change my name to Cherry Ames.  Ack, no,  I still can’t handle the blood and veins thing.  



Dragon Mom: The Teenage Years


Darling Boy was released from the hospital a week ago and I have just about finished recovering.  He got two operations for the price of one.  Apparently,  his risk of anesthesia is higher than normal so giving him 2 operations seemed the safer way to go.  And of course,  medical personnel always make the procedures seem so easy.  It’s only a g-tube placement, it will take ten minutes.  It’s a tonsillectomy,  kids usually go home on the same day.  I understand that this is normal when you work as a surgeon: yanking out tonsils and placing g-tubes are all fun and games for them.

When we discussed the surgery at pre-hospitalization check-ups, the E.N.T. doctor assured me he would be put in Pediatric Intensive Care Unit to monitor him overnight as he may have problems with his airway after surgery.  Then the G.I. doctors said we would be hospitalized  2 or 3 days so we could  learn how to work the g-tube.  Somehow, I thought that was slightly optimistic.  And. of course,  I. WAS. RIGHT.

The G.I. team came out after surgery and said everything went swimmingly.  They even gave me pictures of the surgery.  The G.I. team told us to wait in the post surgical area and the E.N.T. doc would be out to see us.  At about this point, the anti-anxiety aid (klonipin) I brought kicked in and I fell asleep on Lovely Husband’s shoulder.  I woke up to drool coming out of my mouth and a very concerned nurse telling us to get to the P.I.C.U.  We were all like, no, they told us to wait here.  And she was all like, we need you in the P.I.C.U.  Whoah!  So we followed her to his room and he was flipping out in only the way that my Darling Boy can.  Because he’s non-verbal and non-ambulatory doesn’t mean he can’t express himself. He was thrashing around the bed because he was in pain and he didn’t know anyone in the room. He was literally trying to launch himself out of the bed,  Lovely Husband named it the Flying Squirrel move.

The thing with kids who are non-verbal and intellectually disabled is that they are aware of what’s going on around them but can’t always understand it.  He calmed down as soon as Daddy put his arms around him and told him to calm down. .  All went well until shortly thereafter he had a little problem breathing.  They had to knock him out to get his breathing under control but he was on air room after that. My Lovely Husband and I then started taking shifts: one  of us  sleeping while the other kept him comforted. That night he needed a nebulizer treatment and  oxygen. He was on various pain meds but was still waking up in discomfort.  About 4  A.M. he woke up and inadvertently ripped out his oxygen tubing while he thrashed around in bed.  At that point, I asked the doc ( who looked like he had just graduated from 7th grade) if D.B. could have some morphine.  That did the trick and he was able to rest peacefully for a few hours.   We had no more airway incidents after that.

We were in the P.I.C.U. for 4 days.  We didn’t need the docs so much as we needed the 2-1 nursing ratio.  First, we had problems with him tolerating feeds.  Then we had to load him up with twenty billion ways to make him poop.  ( The constipation post-surgery wasn’t allowing him to tolerate even pedialyte.) Through every step of this process, the doctors explained what was going on and planned the next step. It’s fun doing rounds with first year residents when you can answer the attending’s questions faster than they can.  They always consulted with us  because we know his baseline.  There was no way either the Lovely Husband or I could leave him for those first few days.  We are his comfort and his voice.


There are times when well meaning social workers and counselors will tell those of us in this situation to just go home and get some sleep.  I know there are people who don’t have the luxury to stay at the hospital 24/7 because of their family situations.  Fortunately,  I have good friends who took care of the Twins while all this was going on.  But even if I had to stay and Daddy went home to take care of the girls, there was NO WAY I was leaving his side.

After things calmed down and we were on the step down unit, I snuck out of his room while he was sleeping and went to the Parent room.  While I was surfing the Interwebz, I met a lovely woman whose 16 year old daughter was in the P.I.C.U.  She had come to the Parent room to get some laundry done.  We started talking about our children and her daughter has the diagnosis that we were looking at for Darling Boy.  She is also non-verbal, non-ambulatory and has seizure disorder.  They had come in to check out a ketogenic diet to see if it would help her seizures.  She ended up with a collapsed lung and was intubated.  This mom explained to me that she had finally organized a bed and breakfast weekend with her husband but now had to cancel it.  Her only saving grace was that her son (24 and his sister’s best friend)  had already taken off to care for his sister while mom and dad were away.  Now he was coming to stay with her in the hospital.  After about 15 minutes, I could see this woman getting twitchier and I said, “you have to get back on the Unit.” And she said, “yes, I can’t leave her that long.”

So I thought about the beautiful article about being a Dragon Mom.  The writer spoke about how her son was born with TaySachs and she was doing everything to enjoy every minute with him and whatever she could to comfort him through the worst parts of his illness.  And then I thought about those of us who are long-term Dragon Moms.  We fight for the right educational placement.  We fight the insurance companies for everything.  We hold our children and comfort them when they are getting the 8th stick in about a 2 hour period.  (Darling boy has fragile veins.)  We do not leave their sides when the going gets tough.  It’s not because we don’t trust the medical professionals. That’s not it at all.  It’s the fact that we know all our children’s idiosyncrasies and what they mean.  We know the difference between the retching cough that means vomit and the upper respiratory cough.  We know which songs will calm them down.  We know how to hold them and rub their backs.  It’s our voices that calm them and no one else.  It’s not an easy job but what else is there to do.  And when well meaning professionals tell us to take a break because we are twitching a little too much, it goes in one ear and out the other.   I don’t care if they think I’m overprotective and batshit crazy.  They will go home from their shift but my shift doesn’t stop.

And despite the depression, the continual stress, I love Darling Boy so fiercely that  I am on fire with my love.  I don’t know how the muscular dystrophy will affect him as he gets older but eventually he will have breathing issues because that is the nature of the disease.  As I come to terms with this part of the diagnosis,  I try to take each day and celebrate something little.  He slept well last night.  He’s eating well today.  Since the g-tube, he’s been stronger and sitting up like he used to.  My Lovely Husband is also fierce and protective about all of Darling Boy’s care.  There are other parents who have a child on palliative care or are waiting for an organ transplant.  We will stay by their sides and celebrate the good days.  And we will thank our friends for helping us through the bad ones.

To G-Tube or Not to G-Tube, That is the Question

To G-Tube or Not to G-Tube: That is the Question


Darling Boy has a  mild cold and he’s been coughing almost non-stop today.  This despite the cold mist humidifier, saline solution and benadryl.  He really hasn’t eaten much  either.  I just managed to get a little wonton soup into him.  Then he did his collapse- over-his-legs move.  It’s hard to describe but imagine sitting up,  taking a bite, and then your body can’t hold itself up anymore.  Wham and you fold over so that your head is down on your knees.  It’s not really conducive to eating.  I could put him in the wheelchair and strap him in but he doesn’t have the energy to sit up.  


This is when a g-tube (www.umm.edu/ency/article/002937.htm)  would come in handy.  That’s a tube that goes directly to the stomach so I can feed him via liquid nutrition.  I could also get all his anti-seizure meds in him and he can’t spit them back out at me.  Despite Darling Boy’s cognitive difficulties, he sure can figure out every type of food that I use to hide his meds.  I’ve taken to crushing them up and putting them in liquid.  But it is not the most accurate method because he will spit this out too. I can’t blame him,  the stuff TASTES LIKE CRAP.


Last year, his neurologist suggested a feeding tube and I must admit it scared me and made me feel like crying.  Here’s another loss of function for a kid who could eat like a man when he was younger.  He could chew and swallow without any difficulties.  One of the clues that we had to his muscular dystrophy diagnosis was the lessening of his swallowing ability. Last fall, he had a swallow study and he is now at risk for aspiration which could lead to pneumonia.  He can eat food chopped very small and blended foods.  Also, we have to thicken his liquid because if it’s normal consistency, it can penetrate the trachea and get into his lungs.  The loss of physical function is a hallmark for the muscular dystrophies.  Darling Boy has very slowly been doing this.  He’s been a medical mystery because he does move a lot but yet doesn’t have the balance to stand and walk.  He is a Wiggly Guy.  There’s always a body part moving, some he can control but most that he can’t  All this movement burns up a lot of calories thus the need for good nutrition.  He can also dehydrate pretty quickly when he gets sick because it’s so hard to get fluids in him. (Last year he was at the ER 3 times in 2 weeks for dehydration.)   Even though  he gained about 10 pounds and 5 inches this year,  he’s still a scrawny guy.   


There are pros and cons to having a g-tube.  The most positive being that he will get good nutrition and accurate medication dosages.  But there is also the possibility of him pulling it out,  Danny loves to pull on things and I’m afraid that he will get hold of it and pull on it.  I did find that there are belly bands that you can place over the g-tube for just this contingency.  Then there’s the surgery.   I really don’t want him to have surgery if I can help it.  Really, who wants surgery?  


Tomorrow if he’s well enough to see good old Dr. B, our brilliant neuropsychiatrist,  we will discuss this again.  At this point, I think I’m leaning toward the g-tube. It would certainly make his nutritional intake easier on days like this.  My Lovely Husband and I have  hashed this out throughout the past year.  We know it will be the best thing for his nutrition but we are scared that he will pull it out and be in pain.  I know this is a simple procedure and there are kids who play sports and have g-tubes.  But Darling Boy doesn’t fit into this category.  He isn’t aware of safety issues and won’t understand that pulling on the button could hurt him.  Although he’s very aware of his surroundings and I think he’s a genius considering the malformations in his brain,  he is still cognitively disabled.  And he’s strong.   So,  we will probably see a G.I. doctor soon to discuss this next phase of care.   I am definitely leaning toward going forward with the procedure.  But here’s the rub,  (you knew I would get that Shakespeare reference in)  it’s one more way to see how he’s losing function.  My Lovely Husband always says we get used to one thing and then something else happens that we have to get used to all over again.  There is no stability or getting better, now it’s about keeping him comfortable.  


In the long run, that’s what we’ll do.  Take everything into consideration and make the best decision possible for Darling Boy.  And if it turns out to be the wrong decision,  at least the g-tube can be taken out.