After his appendicitis and hospital stay in Mary Bridge in April, we assumed Luke was in the clear.
We could not have been more wrong.
After my heart surgery in January and Luke's appendectomy,
people kept teasing us that these things always come in threes and warning us to be careful.
We figured the worst that would happen is Eli breaking a bone.
We never dreamed we would wind up back at Mary Bridge with Luke, but that is exactly what happened.
On Sunday, May 19th Luke started getting fussy and running a low fever.
Alli stayed home from school the following Monday because she too had a fever, so we didn't think too much of Luke's fever even as it persisted, despite Alli's going away.
By Thursday, Luke's fever was sticking around and he was becoming increasingly upset,
but it was when he started shaking and shivering that I decided to call his pediatrician.
Dr. D felt that he should get labs and sent us to MB urgent care so I packed up all three kids and off we went. Thankfully, G met us there and took the bigs home.
Luke's fever was still nearly 104 despite meds so urgent care gave him more.
The doctor who examined him felt he needed a CT scan of his tummy and sent us to the ER,
with instructions to not make any stops along the way.
By the time we got to MB, Luke's fever was coming down and he was quite playful.
In fact, I called G and told him I thought Luke was fine and we would be home soon.
When the doc came in, Luke was running around giggling and I said I thought we should leave.
She agreed that he looked okay but insisted on doing and ultrasound given his recent surgery.
He was fine during the ultrasound and flirted with the tech (same one from his appendix visit).
As we got back to the room, I asked the doc if she was going to spring us as I was sure he was fine.
Oh Boy, clearly my Mommy Radar was malfunctioning . . . the ultrasound showed
intussusception,
the same thing it showed with his appendicitis.
Soon, the nurse came in to give him some Versad so they could perform an air enema to attempt to correct the bowel ~ it was horrible and looked so uncomfortable AND did NOT work despite four attempts.
We got back to the ER and met with a surgeon who decided to admit Luke and watch him through the night, in hopes of it correcting itself or trying the air enema again in the morning if he was doing okay.
Luke is a very entertaining "high" person and quite happy and giggly, not at all sleepy!
He finally fell asleep in the crib around 2:30am
only to wake up less than an hour later screaming in pain.
The surgeon came with us for another ultrasound and decided to perform surgery immediately.
At 4am, I handed my baby over for surgery for the second time in his short life.
Then I waited, by myself, in the huge surgery waiting room.
The surgery was to be laprascopic and expected to be 30-40 minutes.
A little before 5am, the phone in the waiting room started ringing so I answered it, good thing I did,
it was the OR calling to let me know there were complications and they had to convert to open surgery.
It turned out he had an internal hernia that was constricting his bowel,
and if unfixed, would have caused the tissue to die.
I didn't hear anything until the surgeon came to the waiting room around 7:30am.
He never had intussusception, but she too noticed the thickening of the bowel where he was thought to have it and decided to investigate, she found a large mass and resected a portion of his bowel and had it sent to pathology. At the time, she believed it to be a polyp (possibly cancerous).
Right after she left, two women (a mother and daughter) showed up in the waiting room.
I truly believe God sent them at the perfect time. I was all alone, reeling from the news and these two women encouraged me and prayed for our sweet Luke.
Unlike with his appendectomy, I did not go to recovery but received a call telling me to return to his room.
He wasn't there when I arrived and I admit, that terrified me.
Finally, the recovery nurses brought him to his room and he was out from all the pain meds.
He had an NG tube in his nose to remove waste from his stomach, an IV, heart monitor, pulse ox monitor,
so many tubes and wires coming out of this sweet little guy.
My heart was breaking.
He woke up for a bit in the afternoon and tried watching GiggleBellies on the iPad
but was just so uncomfortable :( Morphine needed, which helped him to sleep.
Luke spent most of the day snoozing, allowing Mommy to catch a cat nap, while Daddy kept watch.
G had to go back to the bigs in the evening so he missed Lukey finally being alert enough to snuggle.
It was like Heaven to be able to hold him again!
That night was tough but we had a wonderful nurse and the morphine and Tordol provided Luke some relief.
Recovery took much longer than expected, and we were in the hospital for 9 days.
Luke required four IV pokes and eventually received a PICC line to receive nutrition.
He truly was the perfect little patient, and all of his nurses adored him.
A couple days before we were released, his pathology came back and while it wasn't a polyp or cancer,
it was indicative of an aggressive form of Crohn's disease so GI got involved and started him on and IV antibiotic known to lower inflammation and it appeared to be working a bit.
Luke was finally released from the hospital on Saturday, June 1st in the late afternoon.
On Monday, I had to take him for blood work, that was an ordeal in itself but he was such a trooper.
The blood work was done by 10 a.m. and at noon, I got a call from his GI doc that his results were so concerning we needed to go back to Mary Bridge immediately and they would possibly readmit him.
I admit that I lost it a bit at that one, we hadn't even been home for two full days.
So back we went. Luckily, the doctors agreed to let him go home so long as he continued to take his meds.
We had to go for periodic blood tests and see the docs the next week.
Fortunately, while his blood work wasn't improving, it also wasn't worsening.
When I went in for the follow up with GI, we learned that the Prometheus blood test was certain that he had Crohn's disease and I had to meet with a social worker to discuss next steps to raising a child with a chronic illness. However, the doc wouldn't give the diagnosis until after the colonoscopy and endoscopy.
Finally, on July 8th, we went in for the tests and GOT NO ANSWERS :(
Luke was pretty pleasant before the tests and playing in the waiting room.
The nurses wanted to know if he was always such a happy boy!
I have to say that I got a glimpse into what my baby may be like intoxicated and it was a hoot :-)
The doc saw patchy inflammation (indicative of Crohn's) and bleeding in his stomach BUT
of the 24 biopsies, 22 were perfect and 2 were questionable so still no diagnosis but also won't rule it out.
Doc says that he is likely in remission so he will continue to see and monitor him every 3 months.
Luke is now on Zantac to attempt to help with the bleeding in his tummy.
Usually he seems fine but there are times when he is clearly hurting and it is so hard to not be able to help.
We continue to pray that God will completely heal our baby boy.
