Fixing Him (Part I)

Just so there are no surprises here, this is a really really long post.  Take a quick trip to the bathroom before you start it.  You’ve been warned.

Friday, November 20th, Jack woke up at 1 am crying that his stomach hurt.  We tried to get him back to sleep, but it wasn’t working, so we eventually just brought him in bed with us.  By 2 am, he was puking every 20 minutes (always in a bowl or the toilet.  Our all white bedding was safe!), and didn’t stop until 5 pm that night.  He was pretty tired and feeling “meh” on Saturday, but was back to 100% on Sunday and bouncing around being his normal crazy self.  And that continued until Tuesday night, when he started getting sick again…this time out of both ends.

We took him to the doctor on Wednesday and the pediatrician we saw said she thought his gut flora was off from having the stomach flu the week before and that he should be ok in a few days.  I point blank asked if we should cancel Thanksgiving, and she said there was no way he was still contagious at that point.  He had stopped throwing up by that time, but was having horrible tummy pains with epic screaming bouts. The odd thing was, he usually seemed a bit better in the afternoons, and by evening, he seemed like he was almost normal again.

Thanksgiving came and went, and his tummy problems continued to the point that I ended up taking him to the ER that evening.  Their diagnosis?  His gut flora was off from the stomach flu the week before, and he would be ok.  I asked for an xray, but they said it wouldn’t show anything.  Then they gave him Zofran, which he puked up.  First time in two days he had thrown up.

One cool thing to put in your “parental instruction manual” that I learned at the ER.  I’m not giving out medical advice, but watched the triage nurse, the ER nurse, and the ER doc all perform the same “test”.  The squeezed his finger (see below) and released it after a second.  The color in his fingertips instantly came back, and that is how they instantly determined that he wasn’t dehydrated.

We found out starting on Saturday that a few people who had been at our house for Thanksgiving were starting to experience vomiting and diarrhea.  I felt horrible!  But at the same time, I found it so odd that my kid had been sick for over a week, I had been around it, and yet no one in our house had also come down with the same virus.  Troy had been sick for 24 hours on Monday, but his was likely from work since it came with a fever.  But my parents and myself were totally unscathed.

The next few days involved more hour long screaming fits (with small breaks in-between bouts of diarrhea and vomiting) that were torturous to watch and listen to.  This kid was clearly hurting.  Knowing he had tummy problems as a baby due to a dairy allergy, we took him off of dairy completely.  When he was little, 36 hours after I had cut out dairy (I was nursing), he was a whole new child.  This time, there was zero improvement in his level of pain.  We were stumped.

There were more doctor’s visits, a visit to Urgent Care for a distended belly (which hilariously ended in Jack starting to fart an incredible amount as soon as we got there, and continued for hours afterwards), and still no answers.  He would have a great day and we thought he was on the mend, but the puking always started up again around 12 am the next day, and we were so heartbroken that he was clearly suffering.

Troy took him one day to our pediatrician’s office, and he just by happenstance scheduled the appointment with the head of our practice.  This doctor also thought it was the same thing – gut screwed up by his stomach flu, which would eventually improve.  But, he was concerned it had gone on for so long without any relief, so he told Troy he would be calling us daily for updates.  Each day, it was the same thing – he wasn’t better, was still throwing up, and sounded like he was being tortured.  We had recorded what we started calling “his episodes” on our phone so the doctor could hear them, and he once even heard one live when he had called me while I was dealing with Jack getting sick.

He finally recommended we see a pediatric gastroenterologist.  Troy called to schedule an appointment, and the earliest they could get us in was January 6th.  That was a total punch to the gut thinking we would need to wait that long to get our boy any relief.

As you can imagine, Jack had lost some weight after all this.  He is normally very slender, but solid as a rock.  This photo breaks my heart.

The whole time this was going on, I’d been texting with friends and updating them daily.  One of my friends said “what does your mommy instinct tell you this is”, to which I replied “dairy issues”.  But as each day progressed off of dairy without improvement, I stopped being able to trust what I thought was clearly the answer.

Finally, after a particularly bad night (Troy and I had been missing days upon days of work since he was too sick to go to school), I called the gastro doc urging them to get him in sooner than January 6th.  They said sorry, that was the earliest appointment they could manage.  At that point, I lost my fucking mind and started sobbing on the phone “just fix him.  FIX HIM NOW”.  That got our appointment moved to December 14th.

On his end, our pediatrician had been calling gastro practices trying to get us in somewhere, anywhere earlier.  He also hadn’t had any luck.  He called me the day I was sobbing on the phone and I said “can you just admit him to the hospital because then he would HAVE to be seen by the gastro.  Or that we would go anywhere in Washington to get him seen. Just please help us”. I think at that moment he finally understood my desperation.  A few hours later, I got a call from the gastro clinic at Mary Bridge Children’s Hospital in Tacoma saying they could get us in the next day at 9 am with Dr. Michael Pickens.  I called Troy sobbing and it took him about two minutes to realize I was crying because I was happy.  I was so relieved!!

We showed up at 8:30 for our 9 am appointment the next day, with a two page diary of what had been going on the last few weeks.  The number of times he vomited, or was screaming, what we had done, and everyone we had seen until that point.  I walked him through it, and then played one of the videos on my phone of Jack screaming at 4 am that morning, and within two minutes we were told “this isn’t normal, and this isn’t ok”.  I got tears in my eyes because finally someone believed us and didn’t think this was just a prolonged tummy bug!

Oh, and did I happen to mention that he came in on his day off because our ped wouldn’t leave him alone?  He said “when Dr. H calls and asks for a favor, we all listen because he does NOT ask for favors”.  Bless you Dr. H and thank the lord for you Dr. Pickens.

He sent us to x-rays immediately, and came back in 10 minutes later, pulled them up and said “this is wrong”.  Jack’s entire stomach was full of gas, and the place where his small and large intestines meet were static and not moving.

All that white fog is gas. An entire body full of gas.

That led him to send us down to the lab to get Jack’s blood drawn, and then he managed to get us in with the Tacoma General imaging clinic THAT day for an ultrasound.  They were totally booked, but he made it happen.  He kept repeating “this isn’t ok”.

His working diagnosis was something called intussusception which is basically your intestines telescoping in on themselves.  It’s incredibly painful, and can potentially be dangerous if the intestines get “stuck” and don’t retract.  Picture a worm eating its own tail.  At least that is what I picture.

We went and had the ultrasound, and Jack did really well. He hadn’t been able to eat or drink since 9 am that morning, and he was grumpy as hell. Troy and I said we wouldn’t eat or drink in solidarity with him, and we were also grumpy as hell.  The ultrasound tech took over 100 photos, and then said “I’m going to go show these to the radiologist to make sure he doesn’t want any more pictures taken”.  Knowing that I have friends who have gotten bad news during ultrasounds for their babies, I knew this was code for “I can’t tell you anything because I’m just a tech, holy shit something is wrong, and I’m going to let the doctor tell you instead of me”.

The radiologist came in, took a few scans of Jack’s belly and said that not only did he have an intussusception, but he had THREE all on his small intestine which was highly unusual.  Where the small and large intestines meet, it is easy(ish) to get rid of the intussusception with something similar to an air or barium enema.  Where Jack’s were located, the simple fixes couldn’t touch the sections.  He told us to make sure Jack didn’t eat, and then sent us back over to Dr. Pickens.

Dr. Pickens brought us back in the office immediately and explained to us what was going on.  Then he went to call a pediatric surgeon to ask her opinion.  Without seeing the xrays and ultrasounds, she said that in cases like Jack’s, surgery may do more harm than good, but that he should be admitted overnight and observed.  Dr. P explained the risks of an episode going on too long (the intestines could get stuck and the blood flow could get cut off, which meant emergency surgery), or he could be “fine” and it would work itself out in as long as six weeks.  After Troy and I discussed it, we decided that one night in the hospital seemed to put us in the “better be safe than sorry” category.  Troy went home to get our stuff for the night, and Jack and I waited around for a room.

I felt like a fool.  My mommy intuition was broken.  It was something serious, and I was just chalking it up to a simple dairy reaction.

At this point, we still hadn’t eaten, which was super stupid while pregnant, but there simply hadn’t been an opportunity for me to sneak away and do it in-between all the appointments and tests.  We were admitted to the PICU (Pediatric Intensive Care Unit) not because he was that sick, but because it was the first room available. A surgeon came to see us, and said that Jack couldn’t eat until the next morning at the earliest.  This is where the term “hangry” came to life.  My very friendly and sweet boy lost his freaking mind and started crying and screaming “I hate you.  You’re so mean, why can’t I eat”?????  I felt awful for him!

My in-laws came at that point, and I was going to sneak away to finally get some food.  As I was leaving the unit, I saw a woman coming in who looked familiar, but I couldn’t place her.  And then I realized I had been looking at her face for the last six years on my boss’ desk.  It was my boss’ daughter who happened to live close to the hospital, and she came bearing two huge bags full of snacks, clothes, shampoo, toothbrushes, etc.  I had never before met this woman, and she showered us with gifts and food.

After Troy finally got there, and the IV therapist got Jack set up with an IV for fluids and an anti-inflammatory, we finally settled in to sleep around 11 pm.  Troy bunked on the pullout bed, and I snuggled in with Jack in the tiny hospital bed.  That was extremely comfortable…and despite being examined throughout the night, Jack slept ok and didn’t throw up for the first time in weeks.

We went down to x-ray the next morning, and then back up to the room and waited for the surgeon to read them.

And waited.  And waited.  Finally we got the call that he was cleared to eat!  We ordered what seemed like one of everything from the menu, and within a few blessed minutes, Jack had a (hospital) feast fit for a king.

And then within minutes of taking his first bite, he said his sides hurt.  Then he ate a bit more and said his tummy hurt.  Then he started screaming like we were scalping him.  Troy went and called the nurse, who went and called the surgeon to come see him.  She came in, took a quick look at him, went and made some calls, and within about five minutes, there was an ultrasound tech (with portable ultrasound), pediatric radiologist, pediatrician, ARNP, nurse, and a different pediatric gastro doc in Jack’s room.

After being very strong and keeping my shit together, that is the moment I lost it.  I started crying because he was in pain again, and simply because he just wanted to eat some food.  But what really set me off was thinking about the situation from his perspective.  Here he was on the bed probably thinking he was dying from the inside, and people were just standing in a semi-circle watching him.  At six, that probably feels pretty horrible.  I actually think it would feel pretty horrible at any age!

Thankfully, because of Troy’s quick alert to the nurse, and the scramble of the rest of the team, they were able to watch his “attack” live with the ultrasound.  After a quick pow pow, the surgeon said that what they had seen the day before – all those intussusception – were no longer there, and his intestines were moving as they should.  His bowels however were very angry and it basically looked like they were pulsating and mad as hell.  As such, this was no longer a surgical issue, and the surgeon left and handed us over to the pediatric gastro.

He reviewed Jack’s report, the x-ray, and additional ultrasounds, and declared that all of this pain, vomiting, and diarrhea was as a result of (wait for it)…a reaction to dairy.

Mom intuition.  NAILED IT!!!!!

It appears that the 15 hour stomach flu indeed wiped out his gut flora and was causing his intestines to basically attack his own body.  Balls.

Another pediatrician came in to do an exam and talk with us.  Within five minutes, she had pegged Jack to a “t”.  She said that he was clearly in pain, but that he seemed to have a lot of anxiety around being ill and that we needed to shut that down and stop feeding his fears. I don’t have patience for that kind of stuff, I swear.  I was a total drama queen as a kid, and my parents stopped enabling me, and I became the anti-sick advocate that I am today.

Troy had to leave for a funeral, and I told Jack we were going to get up and walk.  He acted like I had suggested we cover him in honey and put him on an ant’s hill.  We made it to the nurse’s station and back before he dramatically almost died.

30 minutes later, I told him it was time to move again.  This time, we made it to the end of the hall and he high-fived the Seahawk’s flag.  He then declared that couldn’t make it back and needed a wheelchair.  We had just walked through a hallway full of REALLY sick kids.  I got down to his level and said “buddy, all those rooms we just passed are full of super sick kids.  They look out of their beds and wish they could walk down the hall like you.  To them, you’re a role model.  So when you walk back and you’re crying, it makes them lose hope that one day they can be as strong as you are”.  He picked his lower lip off the floor, squared his painfully thin little shoulders, and marched down that hall like a freaking boss dragging his IV pole the whole way.

After my sister and brother-in-law came to visit, we all went down to the floor below us to hear some Christmas carolers.  He found a Minecraft game to play, and was excited.  About 10 minutes in to the game, he said “mom, I have to go to the bathroom NOW”.  We booked it out of that room, found a bathroom, and let’s just say that the next five minutes were very productive in terms of removing much of that gas from his body.  About halfway through it, he started giggling about it, and I knew he was starting to feel better.  He practically danced and pranced his way back to Minecraft.

We then met with a dietician, and heard the rundown on what life was going to be looking like for Mr. Jack for at least the next few months.  First and foremost, absolutely no dairy.  Not even butter.  In our house, butter is a food group.  No sparkling water (plain sparkling water is Jack’s favorite drink), very limited added sugar, and a greatly reduced consumption of apples and pears (Jack’s favorite fruits).  It is an adjusted version of a diet called the Low Flat Map plan.

We went through his daily intake of food and typical meals, and the nutritionist was pretty darn content with Jack’s diet.  When we got to dinner, I said “well, he eats what we eat”.  She gave me a surprised look and I said “I’m not a short order cook”.  She then asked if I would come and meet with all the other parents she has to talk with on a daily basis.  Ha!

After being told around 11 am that we would need to stay another night, the pediatrician asked if how comfortable we would feel about going home that evening.  Before she even finished the sentence, I started packing.  One night was enough, thank you very much!  We waited around for meds to take home and discharge instructions.  We got the go ahead finally, and before we headed out, I had Jack take a potty turn.

We were sitting in the room with my sister and nephew, and heard Jack crying from the bathroom.  I thought “oh no, here we go again”.  Jack came out of the bathroom in tears saying “I pushed the handle down and wasted water”.  My sister and I burst out laughing.  It was one of those dual flush toilets where pushing the handle down used more water than pushing the handle up.  Oh what he chooses to focus on!

That night back at home was very chaotic and exhausting, but one full of blessings and many thanks to friends, family, and God for our good fortune.  Having to adjust his diet and watch what he eats is a nuisance.  But this “issue” is fixable.  This is something that will improve, and our boy will return to normal.  We are so lucky in that regard and acknowledge that not every parent gets such a gift.

We are lucky that we have faith, because it was comforting during this ordeal (though I did give God the side eye a few times about why answers weren’t forthcoming).  I know oftentimes when bad things happen, people who don’t believe in God will say “how could God let x happen”.  I once watched a PBS show called “Call the Midwife” and one of the characters said something so amazing, that I rewound the episode (Netflix) and wrote it in my phone so that I would always have it handy when I needed it.  She said “God is not the event.  He is in the response to the event.  In the love that is shown and the care that is given”.

For us, God showed himself in friends and family that came to visit Jack and try to make him laugh.  He was in friends who were far away who checked in constantly via text on his condition, and sent prayers, even when many of them had not prayed in many years.  He was in the nurse who hauled ass down the hallway to get a menu when we finally found out Jack could eat.  He was in the child life therapist who bribed him with a Wi to get him to walk around and get his tummy moving.  He was in a random stranger who only knew of me through her mom bringing us toothbrushes, snacks, and hugs.  He was in the kindness that the staff and doctors showed us in every interaction.  He was in our pediatrician who fought so hard for Jack to get attention, that he brought a very busy specialist in on his day off. He was with us, and we were blessed.  We remain blessed.

Next week, Part II will focus on what we are doing in terms of diet for this little trooper.