“As Needed”

Sam the Anti-Preemie: As Needed

There is one topic I have written about on this site a lot: poop or the lack thereof.

From the day Sam was born the one thing he wasn’t so good at was pooping. We have tried everything: Miralax, acupuncture, herbs, Senna, a gluten free diet, a dairy free diet and every combination of the above – sometimes all at once. We have had Sam’s intestinal track studied from above and below. We went to a physical therapist who specializes in chronic constipation. We have even had a biopsy done to check for an underlying medical issue to his chronic constipation. Every bathroom in my house has glycerine suppositories in it. As recent as December of this year, we spent three nights in the hospital for an impacted bowel.

And then, suddenly, something shifted. After the hospitalization in December, Sam started pooping. Daily. After a solid month of daily poops, I started to slowly dial back on the herbs and the Senna until Sam was only getting Miralax. And the poop kept coming. Next, we started to cut the Miralax down bit by bit. And the poop kept coming.

It’s been seven months now of daily or every other day poops – and only a small amount of Miralax.

When the appointment reminder popped up that Sam’s three-month check-in at the gastroenterology clinic was upon us, I reached out to his doctor and told her how we were doing. I asked if she needed to see us. Her response was: “I am happy to see Sam on an as needed basis from this point on”.

That’s right. Sam has been downgraded to “as needed”. The boy who almost needed surgery to clear out his impacted bowel in December is now cleared to only see his GI doc if needed.

Over 5 years of obsessing over poop. Worrying about poop. Wondering what can be done to help Sam poop.

He has it figured out. We will see his GI doctor when and if he needs to.

What’s One More Therapist

When Sam graduated from the NICU, we were lucky. Aside from our pediatrician, Sam only had one specialist, a retinoligist

That didn’t last long.

Pretty soon we added in the developmental playgroup (which came with an OT and a PT), the high risk infant follow up clinic, a weekly visiting nurse, and monthly regional center visits.

By his first birthday, Sam had a gastroenterologist, a different eye doctor, and an occupational therapist.

When birthday number two rolled around, Sam was officially placed on the autism spectrum, which came with a whole new host of specialists and appointments. First there was the speech therapist. Then the FloorTime specialist. She was followed by ABA therapy. And for good measure, I added in weekly acupuncture sessions to help with Sam’s chronic constipation.

For those wondering, this is what Sam’s weekly schedule looks like:
Monday:
8:45-12:45 Preschool + ABA therapist
Tuesday:
9:30-12:30: ABA Therapy
Wednesday:
8:00-8:30: OT at the local elementary school
8:30-9:00: Speech therapy at the local elementary school
9:30-12:30: ABA Therapy
6:30-7:00: Acupuncture
Thursday:
8:45-12:45: Preschool + ABA Therapist
Friday:
8:45-12:45: Preschool + ABA Therapist
2:30-3:30: Speech Therapy
Saturday
1:30-4:30: ABA Therpay

And on Sunday we rest.

So, with a schedule like that, what is a mom to do? I know! Let’s add in Physical Therapy! And for good measure, lets make sure that this physical therapist is about 35 miles from home. (For those in the Bay Area, that means driving through the tunnel – so this can be quite a long drive.)

Crazy right?! Possibly. However, this is a Physical Therapist that specializes in chronic poop issues. Sam is the poster child for chronic poop issues (just search the word Poop or Constipation on this site if you don’t believe me). If there is anything I am willing to dedicate more time to, it’s solving Sam’s poop issues.

So, now, you can add
Tuesday:
1:00-1:30: Physical Therapy (with driving time).

Sam the Anti-Preemie with his dogs

No matter how busy he is, Sam always has time for dogs.

Potty Training with Three Strikes Against You

Sam the Anti-Preemie: Potty Training
Potty training is something many parents fear. Hundreds, if not thousands, of books are dedicated to helping ease the transition from diaper to potty. There are even “How To” videos on the subject. There are also the antidotal horror stories people are more than willing to share with you when they learn you are potty training.

I laughed at all of this when my daughter potty trained in less than an hour and within one week was fully trained at night. Little did I know. She was an outlier, a rarity, a unicorn in the world of potty training.

I am now deep (we are talking MONTHS) into potty training Sam with only mild success. He is fully trained when it comes to pee. But, poop. OH. MY. GOD.

Yes, there are three major factors working against Sam:

  1. He is a boy. Apparently that matters. Boys are harder to potty train than girls. I couldn’t agree more.
  2. He is autistic. Not having all your synapses from brain to body functioning in perfect, neurotypical rhythm apparently matters. I couldn’t agree more.
  3. Sam has major issues with constipation. As anyone who has read this blog know, poop is a major issue with Sam. Trying to potty train a boy who is either totally constipated or basically peeing out of his butt is hard. Apparently bowels in good working order matters. I couldn’t agree more.

Of course, I know he can poop on the potty. He has done little itty bitty poops for me… and huge normal poops for his nanny.

(Yes – I am very bitter.)

But seriously, I am at the end of my rope here. There are only so many pairs of underwear I can wash every day. I have tried everything:
A Schedule: Every hour Sam is placed on the potty for 5 minutes. Trust me – that boy has every opportunity to poop a kid could want.
Pure Bribery: For each pair of clean underwear, he gets a chocolate chip. For small poops in the potty he gets 2 chocolate chips. For every big poop in the potty, he gets 6 chocolate chips.
Threats: Sam is terrified of getting a suppository. We have told him if he poops in his underwear we are going to give him a suppository. All this has done is terrify him into shitting his pants.
Emotional Blackmail: We tell Sam he has made us sad by pooping in his underwear. Sam hates people to be sad. Of course, he doesn’t hate it enough to stop pooping his pants, just enough to scream “I want you to be happy”.
Excessive Celebration: No matter how small the poop may be, we jump and cheer and high five like Sam has had the biggest poop any of us had ever seen. Even the two year old at his nanny share gets in on the action, offering high fives and congratulatory hugs.

So, here I am, at wits end with no idea what to try next. So, dear readers, lets hear all that advice you are just dying to share. How the hell can I potty train a boy with three major strikes against him?

We Survived Our Extended Hospitalization

The idea was simple enough. Well, as simple as a hospitalization and surgical procedure on a 4 year old could be.

But this is Sam. And he has never – ever – done anything simple.

After speaking with the hospital admissions team, we decided to admit Sam at 11:30 am. This would allow him a few hours to hang out with his friends at preschool and participate in his favorite activity… music class.

My mom and I picked him up at preschool, and, before we left, Sam took my mom on a tour of his classroom and playground. It was fun to watch Sam show my mom his cubby and point out some of his friends.

After that, the three of us headed out to check in for our overnight stay at Children’s Hospital.

Check-in seemed simple enough… until the nurse that came to take us to our room looked me square in the eyes and said “who told you to come to the hospital today”. The incredulity in her voice when she asked this is lost in type – but I can assure you the nurse is lucky I didn’t sock her one! I held it together, and sweetly told her that we were instructed to come in by the surgeon. That seemed to satisfy her, so she escorted us to our room.

By now, it was 12:15 and Sam was starting to get hungry. Sadly, little man was restricted to clear liquids only and got his first taste of jello. One bite in and Sam made it clear what he thought of wiggly orange jello: “I don’t like it”. Before we could move to the popsicles, Sam’s nurse arrived and told me I needed to get Sam into a hospital gown and then they were going to put in an NG (nasal gastric) tube.

The hospital gown was easy. The NG tube, on the other hand, reduced me to tears. Sam screamed and cried through the entire insertion. My mom struggled to pin one leg down, while I held the other leg and laid across his chest to keep him still. Sam was so upset and agitated, that before the nurse could even get the tape placed, he managed to get an arm free and pulled the tube out.

By now, my dad had arrived at the hospital, so two nurses, my mom, my dad and I now all worked together to hold Sam down and get the second tube in. The nurse put three layers of tape on the tube and we all let go. He immediately started to try and pull the tape off his face, so the nurse had to put Sam in “NoNo’s”. NoNo’s are plastic arm covers that go from your wrist to your shoulder, retraining your movement and ability to yank things like NG tubes out.

The only way we were able to calm Sam down was to find a red (not an orange) popsicle and give Sam unrestricted access to as many music videos as he might want.

Within an hour of the NG tube torture, another nurse arrived to place Sam’s IV. Sensing the IV might be traumatic for Sam (and me!), the nurse had us go to a treatment room where she used her magical powers to get the IV placed in one shot without Sam even noticing!

All of the traumites out of the way, all that was left was to start to GoLightly and get the colon cleaning underway. (I am totally glossing over the mixup in the hospital orders where they didn’t have all of the procedures in the computer and I refused to allow anyone to touch Sam until we could get things cleared up).

The GoLightly was started by 6 pm. The colonoscopy, endoscopy and biopsy was supposed to happen at 9 am the next day. They figured Sam should be cleared out by then.

By 8 pm, my mom and dad left, leaving me and Sam to snuggle in the small hospital bed. At 9, Sam asked to go pee. I stood him up, he look one look at me and projectile vomited ALL of the GoLightly that had been pumped into his stomach. Apparently, a lot of GoLightly (and a few red popsicles) were in his tummy because the amount of liquid on the floor was impressive.

Three nurses and an orderly later, the room was clean, the sheets were changed, and Sam was sound asleep in my arms. The zofran and sedative they gave him also helped.

At 6 am, Sam had his first tiny poop.

At 8 am, the procedure had been canceled and pushed out a day.

At 8:01 am, I realized that I would be in the hospital for a second night with Sam.

At 8:10 am, I stopped wallowing because a friend arrived with a latte.

The rest of the day, Sam alternated between cute and good natured or angry and violent. The NoNo’s on his arms served two purposes: keep him from yanking his NG tube out and weaponizing his arms. When Sam was angry, he would windmill on me, hitting and screaming that he wanted food. I let him do this, because… well, how could I not.

By 8 pm, Sam had pooped lots, but he was showing no signs of being cleaned out.

By this time, I had not left Sam’s side in over 24 hours. My mom (and Sam’s nurse) insisted that I take a break and eat dinner in the family room. He was asleep at this point, so I was OK leaving him. Besides, the nurse promised she would stay in the room until I got back.

Mom managed to keep me away for a whole 20 minutes.

When I got back to Sam’s room, I could smell we needed to change his diaper. I told mom to run- that she had put in enough time at the hospital. Once she was gone, I pulled the blanket back on my sleeping angel and was horrified to find Sam was in a puddle of liquid poop that stretched from his knees to his shoulders.

The nurse and I spent the next 5 minutes trying to figure out how we were going to change the bedding and clean Sam up!

The rest of the night, I changed Sam’s diaper every 20 minutes… and even with this, his bedding had to be changed about 5 times.

Wednesday rolled around, and I had managed to get a total of 3 hours of sleep over the past two nights. Keeping Sam entertained was exhausting, and whenever I stopped performing, he would totally meltdown and start hitting. When I had nothing left to give, my parents would step in and take over the entertain Sam job.

(My parents were amazing through this whole thing. They were at the hospital with me all day or entertaining Irene.)

Finally, at 12 pm on Wednesday, it was time for the procedure. I carried Sam down to the pre-op waiting area where I continued to act like a performing monkey, doing whatever I could to keep Sam happy.

While we were waiting, I caught the eye of a familiar looking doctor who was walking around by the nurses station. Right away I realized it was the cardiac surgeon who had operated on Sam when he was just a little over one month old.  Apparently the surgeon recognized us as well and came out to say hi.

For those that believe in these things… I took this as a good omen.

Not long after our visit with Dr. Reinhartz, Sam was sedated and whisked away for the procedure.

In a little over an hour, the Gastrointerologist was walking us through pictures of Sam’s now pristine colon.  She told me that on visual inspection everything looked normal.  No inflammation, no polyps, no abnormal bumps and lumps.  She told me I could go back with her and be with Sam as he woke up.

It took longer for Sam to fully wake up than it did for the entire procedure.  Once he was awake, we returned to Sam’s room and waited for discharge.  While we waited, Sam got to order his first meal in almost 70 hours: bean and cheese burrito, mac n cheese, goldfish crackers, chocolate pudding, apple sauce and cake.  I learned my lesson about reading a menu to a starving 4 year old.

By 8 pm on Wednesday, we were finally home.  Sam sound asleep in his own bed, Irene tucked into hers, and I happily in mine.

A few days later we got the biopsy results… everything came back normal.  YEAH!  and SHIT.  Now what?!  Sam and I go to the gastrointerology clinic tomorrow to ask just that.

  • The indignity of a hospital gown

    The indignity of a hospital gown

    The indignity of a hospital gown

  • Wearing Yayo's shoes

    Wearing Yayo's shoes

    Wearing Yayo's shoes

  • Muppets always make Sam happy

    Muppets always make Sam happy

    Muppets always make Sam happy

  • Uncomfortable, hungry and sad

    Uncomfortable, hungry and sad

    Uncomfortable, hungry and sad

  • Still waking up from anesthesia

    Still waking up from anesthesia

    Still waking up from anesthesia

  • First meal in 72 hours

    First meal in 72 hours

    First meal in 72 hours

Of Lice and Poop

After 7 months of single parenting, I really thought I had a handle on things.

We were a well-oiled machine. We were eating better. There was less fighting in the house. We were on-time to everything. Kids were happy. I was happy.

Then, in one evening, my façade came crashing down in a pile of poop and lice.

It wasn’t until my daughter announced her head itched while Sam was in a corner screaming while trying to poop that I realized I was outnumbered and on my own.

Both kids needed me and they both needed me at the exact same time.

And don’t get me started on the pets. Because it was clear they were in need of attention as well.

What was a single mom to do?

Cry. Prioritize.

I explained to Irene that I had to help with Sam’s pooping issues first, and then I would turn my attention to her. She didn’t complain because it gave her time to read.

So, my confidence in my super powers restored, I set about to getting a suppository in Sam.

Right – I was the only adult in the house and getting a suppository in Sam is a two-person job.

Well shit.

After 20 minutes of screaming and crying (some of it Sam’s) and a near miss with a broken nose (all mine), I finally managed to use my Twister skills and pinned Sam down long enough to get the suppository in. Then it was just a matter of waiting for him to pass the largest brick of poop I had ever seen. (I will spare you the screaming and crying that took place between the suppository and the poop – but needless to say, I am still shocked that one of the neighbors didn’t call child protective services.)

After rocking Sam to sleep, I turned my attention to Irene. The shampooing of her hair with Nix was easy. The almost two hours it took to comb her hair with the little lice comb was another story.  Like me, Irene is blessed with a thick head of hair… and according to the Nix box, each and every stranded needed to be combed carefully.

Again, Irene didn’t really complain as she was allowed to watch TV the entire time I combed little bugs out of her hair.

With Irene’s treatment done, I stripped her bed down, gathered her favorite stuffies and headed to the laundry room to start washing all her linens.

It was at that moment one of the cats followed me in, and while looking directly at me, pooped right on the laundry room carpet.

It was 10 pm and there was not enough beer in the house.

EPILOGUE
After finding a beer or two, I did a lice treatment on my own hair to be safe. Then washed all of my linens. The next day Sam was as happy as could be and Irene seemed to be itchy head free… until today (a week later). This time, we went to a professional place (SO worth the money). Now I say with confidence that neither Irene nor I have lice… and a good inspection of Sam this evening, and I am declaring him lice free as well.

Sam the Anti-Preemie's sister after lice removal

Irene after the de-lousing

Sam the Anti-Preemie with a fluffy fro

What curly blond hair looks like after a lice check

Of Milk, Poop and Diaper Rashes

Sam the Anti-Preemie

Let me start by screaming this from my little soap box… I DID IT!  Sam is officially weaned.  Yes, after hemming and hawing over this since March of this year, I finally did it.  I have had many stops and starts, but this time, I stuck to my guns.  Yes, it helped that my guns were a thousand or so miles away on vacation, but when I returned, I didn’t cave.  Yes Sam looked at me with his big blue eyes, grabbed at my boobs and with a tear in his eye begged for “nite-nite”.  I shook my head, told him no more “nite-nite”.  And then Sam just accepted it.

Not really.

He proceeded to scream in my face while clawing at my shirt for the next ten minutes.  But I didn’t cave.  I held strong and rocked him till he calmed down.  We had to repeat this process a number of times over the next four days, but his screaming at the top of his lungs went from ten minutes, to 8 minutes, to five minutes to not at all.

So, I think it is safe to say that Sam is officially weaned.  Now, if only my boobs would stop producing milk I would be set.

Of course,  Sam not nursing has come with a new set of challenges.  It seems that Sam hates milk.  Well, he hates milk if my parents, Peter, myself or one of the nanny’s tries to give it to him.  If Lupta (the worlds greatest nanny) or Lupita’s daughter, Rosa, offers Sam a bottle, he takes it and drinks it without batting an eye.  For the rest of us, he just pushes it away and says “all done”.  We have tried giving him milk in a bottle, a sippy cup, a straw cup, and a regular cup.  We have tried unsweetened almond milk (which he drinks for Lupita and Rosa), sweetened almond milk, vanilla almond milk, and even cows milk.  Nothing works.  He just takes one small sip, lets is dribble down his chin and runs away saying all done.

I am at a loss.

Compounding the issue (because you knew there had to be something) is the fact that Sam now doesn’t drink enough liquids.  And not drinking enough liquids is leading to terrible constipation.  It has been almost 7 days since Sam has pooped.  I can feel all the poop that is in his poor little belly.  He has had Miralx, flax, prunes, cranberries, suppositories and every type of aide I can think of… and nothing.  He strains and pushes and cries and maybe a little rabbit poop comes out.  Tonight, I am breaking down and giving Sam an enema…. just out of the hope that we can give him some relief.

Of course, all his pushing and straining (and suppositories) has led to the worst diaper rash I have ever seen.  Poor little guy is so miserable he just screams and can’t sleep (which of course means I am not sleeping either).

So, I ask… no I beg of you my readers… any suggestions for how to get Sam to drink milk and also how to clear up his massive constipation and diaper rash?