Where the Heck Have I Been?!?

So, remember my post last summer?  You know, the one that sucked?  We've been riding the Crohn's train again this summer.

In June, I took my son in for some further testing since he continues to stall out in the growth department despite being on Remicade infusions since last July. The MRI showed stricture in his small intestine. (A stricture is a narrowing of a section of intestine that, in turn, causes problems by slowing or blocking the movement of food through the area. Strictures, which are caused by recurrent inflammation, can lead to hospitalization and also to surgery to correct them. www.everydayhealth.com)

About a week before our Trip of a Lifetime Vacation to St. Thomas, USVI, we were given the news that surgery was necessary.  After that, things just took off due to the timing of our vacation so we met with the surgeon later that week and scheduled surgery for 6 days after our return.  We were determined to get him in for his surgery in enough time to heal before his first ever sleep-away camp scheduled for the first week in August.  Crohn's, you are NOT ruining the entire summer again!

We made a pact not to discuss, worry, or even think about his impending surgery during vacation.  I would say we stuck to it pretty well except for my morning cry sessions with The Big Guy during our morning walks.  Want to see a sneak peak of Trip of a Lifetime Vacation to hold you over before I officially post?

(People!! Seriously!! This was the view I woke up to every morning! #NOFREAKINGFILTER!!)

Okay, so Awesome Trip happened (stick a pin in it, I'll post later) and 6 days later we checked in to Children's Hospital of Pittsburgh for his surgery.  I know some of you are like me and you like to research and be prepared and Google your heads off when something like this comes up. Maybe some of you just found this by Google-ing your head off?  I'm just going to go nice and slow and recount our entire experience with a Laproscopic Small Bowel Resection due to stricture, due to stupid Crohn's (we don't care any more that it's not nice to call names. We're over it. Bite it, Crohn's.) Maybe I can help someone else prepare and I also want to share on Crohnsforum.com which has been an invaluable resource for me.

What I packed:

small games/puzzles
medical binder
robe for both of us
PJ's for both of us
my toiletries
changes of clothes for 5 days for me (sweatpants, t-shirts, sweatshirts or sweaters)
hair clips
hand lotion
antibacterial wipes
snacks (granola bars, trail mix, gum, candy, crackers, pretzels)
pillows for both of us
fleece blankets for both (he used his to lay on since his back ached)
video games
your child's SS number
insurance Card
cash or credit for cafeteria
water bottles
ear phones

What I forgot: towels, slippers for wearing in the room, book light

1 Day Pre-Op:   As soon as he woke up, he was on a clear liquid diet to prep.  No colors. Which means, no yummy flavors.  

Here was our shopping list:

Lemon Jello
Pineapple Jello
Chicken Broth
Flavored Seltzers
Lemon Gatorade
Clear Cherry Gatorade
Lemon Italian Ice
Lemon Popcicles
Mountain Dew (okay, he is not allowed to drink Mt. Dew but I made an exception because his liquid choices were so sucky.)

The hospital called us around 1 pm this day to give us our arrival time: 9:45 am

Day of Surgery: We went into the room where a number of different medical people talked to us, sometimes 2 at one time: Our surgeon, anesthesiologist, nurse anesthetist, regular nurse, a researcher with a really tricky accent asking for a tiny piece of my son's intestine for testing/experiments, and the pain management team... They all asked us exactly. the. same. questions.  (At one point I was like, "Hey guys, maybe huddle up and share some of this info with your friends, m-kay?" You know, in my head.)

 (nervously waiting)

I had to put on a full "bunny suit" they called it, the disposable suit and hair net that covers all your clothes to accompany him to the surgery suite (I know lingo like "surgery suite" now).  I held his hand as they wheeled the gurney down the hall.  

He opted for "sleepy gas" right away rather than going to sleep with the IV alone.  They put some bubblegum scented stuff inside the mask and put it over his nose and mouth and talked and talked to him about school and sports.  I held his hand and smiled at him the whole time.  Just as he was about to go to sleep he made eye contact with me with a look of fear and then his face softened and he fell asleep with his eyes open. The eyes open thing made him look dead to me for a split second and I had a momentary panic.  They called his name a few more times and there was no response and they said "He can't hear us, he's asleep, Mom."  Cue, me finally crying as I was led back to the waiting room.

He was in surgery from 11-1:45 and in recovery from 1:45-3.  In recovery, the pain team installed a nerve block on both sides of his spine to numb the abdomen.   He was also on morphine and IV Tylenol at that time.  As soon as he stirred they came to get us and we sat with him while he finished waking up.

When we saw him he had in NG tube in to drain his stomach contents, an IV in his hand for fluids and meds, and two thin tubes coming out of his back feeding the nerve blocks.  He had a sore throat and was super sleepy.  He had an 1 1/2 inch incision through his belly button and 2 small incisions to the side held together by glue, no stitches:

He had 38 cm of distal ilium removed due to scar tissue and "creeping fat".  They gave us photos of his actual intestine showing the strictures and preceding bulges indicating back up.

 We got into our private room around 3:15. We literally, wiped every single surface, inside drawers, every handle, every remote and light switch and bathroom down with antibacterial wipes the second we walked in.

He was still very sleepy but could hear us and respond:

From this point on, for pain he had the nerve blocks, IV Tylenol and  Dilaudid (fast acting narcotic) as needed.  He needed it nearly every 2 hours at first.

He was given a deadline of midnight to pee.  He tried and tried but couldn't go, so at 10:45 they did a bladder ultrasound to determine if a catheter was necessary and determined his bladder wasn't full enough and started a quick bolus of fluids to empty in an hour.  He finished the extra bag of fluids and peed at 11:55 pm.  The nurse helped him stand to pee but he was too uncomfortable so he laid down to do so in a hand held urinal.  Laying down to pee takes a really long time so he peed about 2x per hour, it took about 20-30 minutes each time to empty his bladder and this happened All. Night. Long. until 3 am.  I was delirious in the morning.  

Finally, he decided he needed to speed it up so he began to ask stand up next to the bed to pee with help from me or nurse. He stood up about once an hour after that. He needed to have head support like a baby since his abs were just not functional.  He was very wobbly and needed support to stand.  For some reason, seeing him in pain when he stood up caused me to feel very light-headed and I had to sit with my head between my knees after he was finished each time.

Day 1 Post Op: Surgery rounded at 6:30 am and said NG could be removed but it took hours before that actually happened.  

In the afternoon, the nurse removed the NG tube. It didn't hurt, but he coughed and gagged when they pulled it,  he was afraid and the sensation freaked him out a bit.  He sat holding his nose with a tissue for about 20 minutes after.

 (very strange sensation, removing NG!)

He is regularly standing up to pee and nurse tries to have him sit in chair.  Her goal is 1 hour sitting up.  He lasted 15 minutes. He was in too much pain, so he was dosed with Dilaudid and went to sleep (I totally used the old "sleep when the baby sleeps" advice and slept every time he napped).

That afternoon he also slowly walked with us holding him under his arms about 50 yards down to the sun room at the end of the hall to sit in a chair.  Lasted sitting up about 15 minutes again, then we walked back and went back to sleep.

He began to feel gas pains in his abdomen and referred shoulder pain.  He also complained a lot of back pain, I think from the tape used to secure nerve block:

 Once the nurse told him the Dilaudid wouldn't help for gas pains, he stopped asking for it then gas production began in earnest.  He had his first BM - very watery - that evening.

Lots of getting up in the night to pee and pass watery diarrhea.  Very little sleep again. Just IV Tylenol and nerve block for pain.

Day 2 Post Op:  He woke up rearing to go. Nurse told him walking around would help him get better. Bowels have to move before food, so that kid walked and walked!  We got on a schedule, every 2 hours we walked to the sun room or rooftop garden to sit in a chair and do his breathing treatment exercises, sat there for an hour then walked back to the room.  Pretty soon he was having gas and BM's left and right.  Still watery. Pain level hung around a 4 using only Tylenol and nerve block - most pain from gas.

He was walking now with just a hand on his arm. No naps today. Lots of visitors.

That night at nurse change I pulled our nurse aside to ask her to speak to PCT about coming into room quietly and not turning on all the lights for vitals.  She handled it, and they both used flashlights for vital checks for the rest of our stay. (slept like a baby...well, a baby in the hospital... but proud to say that they didn't wake my son up one time that night!)

Day 3 Post Op:  I woke up feeling so good about the day before but he seemed different. Tired. Blue. 
Surgery rounded and okayed liquid diet.
I helped him get out of bed to make our walk to the sun room and he started crying half way there.  We got to the threshold and he said in a panicky voice "I have to lay down!".  We both collapsed onto the couch near the doorway and he curled up with  his head in my lap and said "I can't walk today. I feel funny."  Nurse brought him apple juice and we got him back to bed.  He slept almost all day long. When awake he said he "felt funny" or "out of it".
(sleep is restorative)
Pain team had wanted to pull the nerve block today but decided to leave him alone so they wouldn't put him over the edge. His surgeon came and sat on the bed with him for about 20 minutes.

He started to perk up around 4 pm during a visit from his brothers and best friend:

 (brothers make it better)

At this point, he learned to play possum to avoid talking to doctors, so when an alternate surgery doc rounded that afternoon he pretended to be asleep until she left!

Day 4 Post Op: He woke up when surgery rounded and they gave him to okay to advance his diet - no restrictions!!!  Remove the IV!!!  Remove the nerve block!!! "This is a good day." he said.

His face broke into a big smile when he looked at the menu!  He ordered sliders, tater tots and a chocolate shake:

(breakfast of champions!)

He was a lot more energetic and resumed the walking schedule and even went all the way down the the cafeteria to sit outside!  

Pain gave the order to remove the catheters and he showered and got dressed for the first time:

It really was a good day. We cuddled up to watch the Pirates play some ball that night.

First solid poo that evening!!

Day 5 Post Op (yesterday): We got the okay to go home today!  Our favorite nurses/PCT were on that day and we were so happy.  Deirdre, Jen, and Ashley posed for a picture that morning:

Jen pushed through the discharge and we were walking in the door to our house at 10 am!

Once we got him home and knew everything would be fine, I started to cry.  I cried intermittently all day long.  Every time I thought of it, that whole wall of strength I had built up for my son crumbled a little more.  I was so thankful, so hopeful that this is the answer, so happy to be home, so crazy with worry all those 6 long days.

I would recommend Dr. Ward Richardson to anyone looking for a pediatric surgeon. He worked hand-in-hand with our GI doc, he is the smartest guy I've ever met yet still has a sense of humor and doesn't have any of the usual surgeon cockiness.  Love. That. Doc.

Our nurse, Jen was amazing. CHP, give that girl a raise!  She was knowledgeable, a good problem solver, knew how to move things along when they were taking a long time, and she was kind and funny.  Her intern who is learning at her side has a great teacher and will be a great nurse someday.  Our PCT, Ashley was amazing. If this girl is not studying to be a nurse she should be!!  She is caring and gentle and we loved her.

Children's Hospital of Pittsburgh was beautiful and well appointed for keeping kids happy and healthy.  They had lots of fun activities like Pirate's games on the big screen, a "Healing Garden" a library, beautiful art and lots of games as well as knowledgeable staff.  I don't want to go back there, but if we did we would be in good hands.

I wish I could remember our pain doc's name, but if you meet the guy who tells the bad jokes who once lived at CHP with his own ailing son, he's the guy.  Amazing. Funny. Good at his job.

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