Luke's Health Issues {Take Two}

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.

Home at last!!!

Now THIS is more like it . . . 

All three monkeys feeling well enough to play together in the backyard. 
God is so great!  
Garrett and I are completely exhausted but our hearts are full and we are so grateful to have the G Fisher Fam back together at home once again. 
Many thanks to everyone for your prayers and support. 
We continue to praise God for all He has done and ask that He heal Luke completely.

Day 9 {Discharge!}

We are on track to be discharged between 3 and 4 this afternoon assuming Luke can tolerate the oral version of his antibiotic at 2pm. 

Surgically, he looks great, he's eating and "voiding" just as he should. He hasn't had any pain meds (including Tylenol) in the last four days - little ones bounce back so quickly. 

The GI doc saw him yesterday and today. Further testing is needed (starting Monday!) but he suspects Luke may have an aggressive form of Crohn's disease - no sense getting too worried until we know for sure, right?

Praises:
- Luke is feeling great and eating again
- we may go home today and have our family reunited
- the BEST doctors and nurses who we will miss seeing, they have taken such great care of Luke and our family
- friends and family who have provided us prayers and support

Prayer Requests:
- Luke does not have Crohn's disease, or if he does, the doctors are able to treat him effectively
- strength and peace for mom and dad, and understanding for the big siblings
- Eli's fever subsides and Luke doesn't catch his bug
- peace and comfort for Eli's former preschool teacher's family as her husband passed away yesterday

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." ~ Isaiah 41:10

Day 8

Feeling hopeful that the end is in sight! 

Lots of progress being made - drinking juice and Pedialyte, pooping, and perkier. 

Surgeon came to see us just before 10 last night to let is know that Dr. Pickens from GI would see him today and wanted to order various labs (colonoscopy likely in a couple months after he fully heals from surgery). 

They started him on Flagyl to treat any chronic bowel disease and it is a two-week course. 

He should get to try solids today and possibly go home this weekend!!!

Praises: 

- amazing doctors who are taking such good care of Luke and keeping us informed

- friends and family who continue to lift us in prayer help in so many ways

- Luke's bowels are working, never thought I would be so happy to change a stinky diaper

- Luke's perking up so much

Prayer Requests:

- no chronic bowel disease 

- Luke tolerates solid food today

- patience and energy for mom and dad

- Eli's health

- peace and understanding for Alli, Eli and Luke

"I can do all things through Christ who gives me strength." ~ Philippians 4:13

Day 4 {Morning}

Sweet Lukey is still snoozing this morning.

He had a fairly good night. We have been asking for lots of prayers and will continue to do so but I thought it was high time we ask for praises as well. Our God has been so faithful and since I spend half my day crying out to Him and the other half thanking Him, I figured I should share it all. 

Praises:

*a good night's sleep for both Mommy and Lukey

*amazing doctors and nurses who have been so responsive to Luke's needs

*wonderful friends and family who have come to sit with us in the hospital, brought us goodies, and have taken our big kids for play dates 

*energy, peace and patience as we face each new day

Prayer Requests:

*Luke will feel little pain as they give him a new IV today

*Luke will start pooping or tooting so we can move towards removing the NG tube

*pathology reports come back clean

"But I will restore you to health and heal your wounds, declares the LORD" ~ Jeremiah 30:17

A Wild Ride: Luke's Hospital Stay

Our Easter ended in a way we never expected . . . at Mary Bridge Children's Hospital.

We knew Luke was sick, but we had no idea how bad it was.

On March 21st, Luke began running high fevers and was fussy and tired.

By Saturday, March 23rd, it was getting bad enough that we took him to the doc,

thinking he must have an ear infection.  Of course the ears looked fine.

Doc said it was like Roseola (baby measles) and the fever should break by the next evening,

with a rash to follow in a day or two but to come back if he still had a fever later in the week.

Well, fever didn't break and no rash.

He was fussy and clingy, never wanting to be put down, not eating or drinking much.

We figured it was still just a virus but on Friday, his fever jumped to 105.3 

so we immediately took him back to his doc, who said it was just a virus and keep medicating.

I was NOT impressed with this response and was becoming VERY worried.

G and I debated taking him to the hospital but kept giving meds.

By Sunday (Easter), he was not eating or drinking much at all and looked awful.

The fever was not coming down despite the meds.

I decided to call the on-call doc.  I was so impressed.  

The on-call doc called within 30 seconds of me hanging up with the answering service.

She asked if we had taken him to the doctor and I said twice, last time on Friday.

She said this was going on way too long and we needed to take him to Mary Bridge immediately.

We called Adele to come stay with the bigs and headed out the door, still not realizing how sick he was.

When we got to Mary Bridge at 7pm, his fever was still at 103.5 despite the meds.

The ER doc was wonderful and incredibly thorough.

She wanted an x-ray of his chest and abdomen, blood work and IV fluids.

He looked pretty cute in his little hospital gown.

The x-ray results led to her wanting an ultrasound of his abdomen ~ he was NOT impressed.

It obviously hurt when they pushed on his tummy.

The ultrasound showed swollen lymph nodes, free standing fluid and Intussusception 

(bowel telescoping into itself).  The doc explained that this would likely need a type of surgery to correct and she ordered a CT of the abdomen as well.  They gave Luke morphine to help with pain.

By 2 a.m., the original ER doc was heading out (having stayed an extra 3 hours to figure out Luke)

passing us on to another ER doc and letting us know that they were going to admit Luke.

The new doc said another radiologist read the CT and disagreed with Intussusception but was concerned about Luke's appendix, which could not be seen but there was the free standing fluid.

This ER doc didn't feel Luke was having an acute presentation but still needed to be admitted.

We were admitted to the medical-surgical floor a little after 6 a.m.

We met yet another amazing doctor, who after examining Luke disagreed with the ER doc and

felt Luke needed to be seen by the surgeon ASAP.  He called in a Pediatric Radiologist to read all of the scans.  The Peds Radiologist did not see Intussusception, but could see the appendix and 

the many swollen lymph nodes and agreed that the surgeon needed to see Luke immediately.

The surgeon came by shortly after that and after examining Luke, let us know that it was acute,

saying it "this child is very ill and needs surgery right away."

Luke after being admitted and before surgery.

She was concerned that the appendix may have ruptured and they began treating with IV antibiotics.

The surgeon, having been working for multiple days, called in another surgeon to make sure Luke

had the best care (we really appreciated that!)

Right before surgery, they let us know they would remove the appendix, examine and fix the bowel if necessary, and biopsy the lymph nodes (mesenteric lymphadentitis) to rule out lymphoma (what?!?!?)

We handed our baby off a little after 9 a.m. for surgery.

Everything happened so quickly that we didn't have too much time to freak out.

Many, many prayers were said as we waited for the update.

The surgery took just over an hour and was a success.

The appendix had not ruptured but was inflamed and removed.

The bowel was inflamed and thickened in one portion, suggesting that he had Intussusception but it had corrected itself.  The lymph nodes were "chunky and juicy" and had been pushing on the bowel and appendix.  They were all removed for biopsy.  The quick pathology showed them to be benign.
So we finally had our baby back in our arms.
He spent most of Monday sleeping in the crib, receiving IV fluids, antibiotics and morphine.
G left around 6 p.m. to go relieve Adele and take care of the bigs.
Luke and I had a rough night, with him needing morphine almost every hour :(
Tuesday morning was still pretty rough but he started to sit up when G got there.

 Lots of time was spent sleeping on Mommy in the rocking chair.

He was such a trooper on Tuesday and attempted to play with some toys.

Pretty soon, we even convinced him to eat a cracker and smile!

We were overjoyed to see that sweet smile on his face!!!

I left the hospital for a bit to have lunch with Alli at her school and pick up Eli from his,

before hightailing it back to the hospital to switch with G.  Eli was so bummed he couldn't visit Luke :(

Later in the day, Luke and I decided to check out the playroom on our floor.

He was pretty clingy but did enjoy the toys and cars.

It didn't last too long and pretty soon, we were back to snuggling in the rocking chair.

Uncle Danny came for a visit Tuesday night and Luke enjoyed playing with him.

He even saved his first poop (disgusting and dripping on the floor!) for Uncle Danny, who left before I could change him, gee I wonder why? :-)

Tuesday night was a bit better but still not great.

By Wednesday, Luke was walking around more and drinking enough that they removed his IV 

(which was causing a ton of swelling in his hand).  He did well with the oral meds but was still uncomfy.

So there was still lots of snuggling in the rocking chair.

 He tried to play but was still fussy.

Ducky Gramma and Papa came for a visit Wednesday morning and he enjoyed that.

He also was entertained after his little sponge bath where Mommy tried to wash his hair.

Wednesday consisted of taking tons of laps around the hospital floor in the Cozy Coup.

Luke slept pretty well Wednesday night, at least until the nurse decided we had to change his diaper at 4:15 a.m., needless to say, he wasn't going back to sleep after that ~ GRRRRR!

Thankfully, we got the great discharge news Thursday morning!!!

We spent the morning snuggling the rocking chair where the little man snoozed.

 And doing more laps around the floor in the the Cozy Coup.

As the nurse was going over our discharge instructions, Luke was smiling and pointing to something in the hall, I had no idea what was going on until I stood up and saw a golden retriever who had come to visit with the children.  Harli (the dog) came to Luke's room and Lukey was beyond excited, smiling as he pet Harli and Harli gave him smooches.  I hadn't seen Lukey that happy in two weeks!  Perfect send off.

We finally got home a little before 2 p.m. and we were both so excited!

Lukey was smiling so big and was happy to have a snack in his high chair

The bigs returned to find Lukey enjoying his snack.  All three were excited to see each other!!!

I was worried that Lukey wouldn't want to sleep in his crib after sharing a room with Mommy for 5 days but I could not have been more wrong.  He was so excited when he saw his crib that he threw his Ducky in and pointed to it.  I laid him down and he went right to sleep for a couple of hours ~ yeah!

During that time, Alli and Eli enjoyed some Mommy time and Alli gave me a make over

Can't believe I'm posting this picture but you may as well see how I looked after 5 days in the hospital,

Eli pointed out that I have polka dots on my face ~ yep, nice way to say stress wreaked havoc on my skin!

It was a scary, wild ride and we are so thankful for the support and prayers we have received.

Lukey is still pretty clingy and doesn't want Mommy out of his sight, BUT . . . 

Life is starting to return to normal now and we continue to thank God for His many blessings.