Support Natasha's Family Through Leo's Health Crisis

Jessica Merth is organizing this fundraiser on behalf of Natasha Stocco.

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Hi, my name is Jessica and I am fundraising for my sister, Natasha, and her family.

Some of you may know that her son, Leo, was born with short bowel syndrome (SBS).

Short bowel syndrome (SBS) is a condition that occurs when the small intestine is damaged or shortened and can't absorb enough nutrients from food to maintain health.

He had surgery when he was only a few days old and spent the first 3 months of his life at Children's Hospital.

For the first year they thought he would only ever be able to get his nutrients from TPN*[1]. Miraculously, he was able to remove his central line and his button at his first birthday and has been an overall active and healthy kid for the last 15 years.

In February, testing showed that Leo's vitamin E & A were detrimentally low, supplementing with little improvement.

He was referred to GI.

In March, Leo started vomiting. At first it was thought that he just had a stomach bug, but with his SBS, it can be extremely hard on his body.

He ended up in the hospital in Grand Rapids to receive fluids and was sent home.

A week later he was having muscle spasms through his entire body and went in to the ER again. They did some testing and were going to send him home when his entire body seized up.

He was ambulanced to Children's where they found a blockage. He had an NG*[2] tube put in while they did tests and decided whether or not to do surgery to remove the blockage or wait to see if it would pass with non-surgical interference.

After a couple of days they removed the NG tube to see if clear fluids would pass through and they slowly introduced clear fluids, apple sauce, etc. He was able to eat without throwing up and was sent home.

In the 2 months since, he has regularly been unable to eat, has had vomiting, and extreme abdominal pain.

On Tuesday, May 14, Leo had his first exploratory surgery.

They went in laparoscopically and found adhesions (scar tissue from his previous surgery) that could have been a possible cause for the issues as well as a mesentery hernia and a looped bowel. They repaired.

After surgery, Leo was having a hard time managing pain and had a low fever.

He was unable to eat and his bowels were extremely slow to "wake up."

He was on an NG tube and the output was higher than they thought it should be.

Sunday his fever flared and he had a large increase in pain and started vomiting overnight.

He was back in surgery Monday (May 20) afternoon.

They found that new adhesions had formed since the previous week's surgery and they removed them. It is very rare for adhesions to form so quickly.

Pathology confirmed a secondary serious rare condition of brown bowel syndrome *[3].

He also had a PICC*[4] line put in so he could receive more nutrients.

He will be having a third surgery in the next few days to try and potentially explore/repair his other options.

We are all hoping and praying for the best outcome.

Natasha has been unable to work since May 13, as she is staying in the hospital with Leo, and there is no end in sight.

Any help with her monthly bills to support them through this health crisis would be so appreciated.

***UPDATE 5/29/2024***

Leo just got out of surgery, they did a full incision and found a mass of twisted and tangled bowel. They removed adhesions and untangled the bowels.

If this doesn’t prove to be the issue, they will look at other long-term, non-surgical options.

It will be at least 7 days before we can expect to see any improvements (if this is the issue).

If you can, please pray, donate, or share. Every little bit helps so Natasha can focus on being here and supporting Leo instead of worrying about how she can pay the bills. Thank you to everyone who has donated or shared already, it is so appreciated!

***UPDATE 6/1/2024***

Day 18:

Yesterday, Natasha was able to make it home to celebrate her daughter, Ruby, graduating from high school.

It was incredible to see Ruby's face light up when she saw her mom had been able to make it to her graduation.

The kids are all very close so it has been hard on them to be so apart for so long.

Natasha is back at the hospital today.

Leo is still struggling to manage his pain--even with his high pain tolerance, he is at an 8/10 at times.

He has been on narcotics for most of his stay.

Every time he to starts to recover from one surgery he has to have another.

Monday he will have a non-pharmaceutical pain team come to help him navigate pain management.

When intestines have been manipulated like Leo's during surgery, they "go to sleep" and the heavy narcotics that he has been on make it even more difficult for his intestines to "wake up."

Until his intestines start working on their own, he will continue to have the NG tube doing the work of draining (If he didn't have the NG tube pulling all of the bile out, he would be throwing it up) and the NG has been causing him a lot of discomfort.

Mom and Leo were moved to a bigger room today.

This will be their third upgrade.

While the extra space is nice, the move makes it clear that they are not expecting Leo to be able to leave any time soon.

Please continue to show your support in any way that you can--share, donate, pray. We love and appreciate all of your donations and kind words.

This is a long road and we aren't sure where we are going to end up, thank you for making the load a little lighter.

Your support and generosity mean everything.

***UPDATE 6/4***

Ruby Stocco was able to stay with Leo & Natasha Stocco at Children's Minnesota over the weekend.

It was good for Leo to have his sister around.

Natasha sent this update today:

“Day 21

6 days after the latest operation.

It was a long weekend.

NG issues, lots of naseau, pain, and potential bladder issues.

All those have been somewhat remedied.

Pain is minimal today, narcotics are getting lowered, and Leo's demeanor is much better.

There were GOOD bowel sounds this morning, which is big news.

Still no motility.

Minnesota GI is officially on board now while we are here in the hospital.

They have some medicine that may help motility. We just started a trial of that at 3pm.

Praying it helps with no issues. A side effect is cramping, and that has already started.

They can also offer other potential solutions to help get him out of the hospital, but not without potential feeding tube.

We're not there yet, but it's a possibility.

We can't live in the hospital forever.

He's been losing weight despite being on TPN.

They take daily labs to assess nutritional needs and tweak accordingly.

The dietician just came in to let me know they are going to increase calories.

I'm still waiting on mayo to send his A and E labs back, but I am hoping to get him at a baseline for those two, since he's been SERIOUSLY DEFICIENT for months, despite oral supplementation.

With TPN on board, they can get those in bypassing the gastrointestinal tract.

Hopefully, decreasing issues with Brown Bowel Syndrome.

We enlisted Physical Therapy.

It's good to have them on board.

We still are playing a waiting game.

But those who wait on the LORD shall renew their strength; they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint. Isaiah 40:31 Thank you all so much for your donations.”

We are mind blown by your kindness and generosity! Please continue to share, donate, and pray.

As of right now, there is no timeline for Natasha being able to return to work.

Your donations mean she can continue to emotionally support Leo while continuing to advocate for him.

Thank you, thank you, thank you ❤️

***UPDATE 6/11/24***

Updates have been few and far between, not because there have been no updates, but because we have been taking a moment to managing our disappointment, grief, and frustration.

After weeks of waiting and hoping for Leo's bowels to start working on their own, Leo was told that he will most likely be leaving Children's completely dependent on TPN and with a stoma *[5].

Update from Mom(Natasha):

Day 28...

Leo currently presents with chronic pseudo obstruction*[6] and Brown Bowel Syndrome.

These issues cause serious life-threatening risks without medical intervention.

Leo's bowels still refuse to work.

He has a significant amount of output from his NG.

When we do a clamping trial *[7], he gets full and feels like he is going to throw up, so he needs to be suctioned out quickly.

Medical care at this point is maintenance.

There is not a lot that can be done to cure this.

Time. Prayer. Miracles.

As of this morning, he has decided to allow them to put in a port a cath *[8] (for home TPN), and is debating between getting a mickey button *[9] or an ileostomy so we can manage care from home.

I don't expect that to come to fruition this week.

Possibly by the end of next week.

Maybe longer.

There is a lot to figure out before discharge is possible.

I will need appropriate training to do IV nutrition and central line care at home.

I have experience with this, but I need a refresher.

I'm familiar with feeding tube, but not ostomy care, so I may need training on that too.

We'll need to get a homecare provider to deliver TPN and supplies as well.

I do not expect to be able to return to work anytime soon.

Upon discharge, I do plan to add a functional MD to our arsenal.

He is not covered by insurance, but has more flexibility in testing and supplementation than strictly conventional medicine. We have had good results with him before.

I'm definitely not done fighting for Leo.

Please pray for all these things.

For God's direction, protection, and miraculous healing.

For faith that endures, strength, perseverance, and comfort.

John 16:33

"I have told you these things, so that in me you will have peace. In this world you will have trouble. But take heart! I have overcome the world."

***UPDATE 6/13/2024***

Leo had surgery to have his g-tube and port a cath placed yesterday. The surgery went well but he is in so much pain right now.

Please continue to support Leo and his family however you can— share, donate, & pray.

We appreciate you more than you know. ❤️

Natasha’s update:

“Day 30...

He's at a 10 before pain meds at gtube site.

Seeing him in pain is the hardest, whether emotional or physical.

Lots of trial and error with Gtube functionality.

Care coordinator and social work should come by today.

Please pray that Leo's bowels begin to function again. That pain is managed.

For encouragement for his mind, body, soul, and spirit. “

***UPDATE 6/14***

Leo spiked a fever last night.

We are still waiting on the source—

Natasha’s update:

“Day 31:

6am

Leo spiked a fever last night. Waiting on blood cultures. Ugh

10am

103 fever with meds.

Surgery, hospitalist and MN GI have all been in.

Blood cultures drawn to rule out line infections.

Neck ultrasound to rule out clots and double chest xray to rule out pneumonia.

Antibiotics on board.

He's still in lots of pain when moving.

And headache from fever. He hasn't walked since last surgery. We're definitely struggling here today

12pm

Not good.

Things are getting emergent.

We've been in xray and ultrasound all day.

Heading back for a Stat gastrografin.

Air where it shouldn't be

UPDATE

2pm

So far we have some blood clots, need to pull the picc asap. He'll have to be on daily injection of blood thinners for a while. Waiting on surgery to come give results of air in tummy. Mostly suspecting line infection. He's on a couple antibiotics. I'll let you know what else I find out.

UPDATE

6pm

It's like a night and day improvement since they took the PICC out. He's not trembling with fever, is asking for gum, isn't complaining of pain, and is awake watching a show. I'm cautiously optimistic.

UPDATE

10pm

He seems to be improving slightly. He still has a fever, but also has an attitude. That's a good sign, telling me he still has fight in him. He's very unhappy about the blood clot injection, twice daily for as long as he has the line. I'm hoping it won't be too terrible, because either he or I has to do it when we are home.

UPDATE 6/15

9am No fever since 730 pm. He got up and walked for the first time since Wednesday. ♡♡♡”

UPDATE 6/18

From Mom/Natasha:

“The good news...Leo has been fever free since Friday night.

This morning Leo's bowels functioned naturally for the first time in 35 days! Praising God for that!!!

He can have ice cream Wednesday for psychological reasons only. It needs to be immediately vented out.

Other news...Leo still suffers from a long-term motility disorder. The SLOWER he goes, the better.

Anytime he gets fluid backed up in the stomach, it stretches it out and we move all the way back to the beginning. And by beginning I mean readmission to the hospital. Ugh.

He gets to have 5 ounces of liquids 3X a day right now. He should not have any solids at all.

He was greatly disappointed in hearing that.

He can eat, but absolutely SHOULD NOT.

All his nutrition will still come from TPN.

He will still need gtube and regular venting and suction with intermittent clamping.

It's possible we could be home at the end of the week.

I still need all the IV and central line training, AND I have to learn how to give twice daily shots.

Please pray for a smooth transition home, for my ability to retain all the necessary information and teaching I will need to take good care of Leo and his many medical needs.

Please pray that Leo will keep his eyes looking up,and that he will see the value in waiting until his body is ready to put solid food in it.

Proverbs 14:10 Each heart knows its own bitterness, and no one else can share its joy. “

UPDATE 6/19

From Mom/Natasha:

“I think we're on Day 36...

One week since they added his port a cath and Gtube.

Leo got to have sips of Gatorade yesterday, strictly for maintaining his sanity.

He still doesn't absorb anything through his digestive tract.

Today, he gets to have 5 bites of ice cream.

We haven't seen any more movement from the intestines since the other day, but he still has bowel sounds. So that is good.

Tomorrow, we have to get a heart ultrasound due to a murmur that keeps popping up periodically.

I practiced giving shots yesterday on fake skin. I'm still apprehensive about doing it. Please pray I will be very good at it, and soon!

We are inching our way towards heading home.

I'm overwhelmed about it, but know it will be ok after we find our niche.

Please keep praying for bowel function to fully resume. For perseverance in the waiting. For diligence in adhering to strict restrictions on oral intake, and for the LORD to continue to renew and restore our souls.

Psalm 23:1-3 The LORD is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, HE RESTORES MY SOUL. ♡♡♡ “

*[1]Total parenteral nutrition (TPN) is a method of feeding that provides nutrients intravenously to people who can't use their digestive systems. TPN bypasses the gastrointestinal tract and is used when someone can't or shouldn't receive feedings or fluids by mouth.

*[2] NG Tube/ Draining

Removing liquid or air from the stomach. NG tubes can be used to relieve stomach decompression in cases of intestinal obstruction or ileus.

*[3] Brown Bowel Syndrome: This includes general dystrophia, weight loss, protein deficiency edema, motility problems (e.g. vomiting, flatulence, and pseudo-obstructions), liver cirrhosis, signs of vitamin deficiency involving severe osteoporosis, abdominal pain, diarrhea, and steatorrhea

*[4] A peripherally inserted central catheter (PICC) line is a type of central venous catheter (CVC) that can be used to administer total parenteral nutrition (TPN).

*[5] A stoma or ileostomy is an opening on the abdomen that can be connected to either your digestive or urinary system to allow waste (urine or faeces) to be diverted out of your body. It looks like a small, pinkish, circular piece of flesh that is sewn to your body. It may lie fairly flat to your body or protrude out. Over the top of your stoma you will wear a pouch, which can either be closed or have an opening at the bottom. Your stoma has no nerve endings so you should feel no pain from it.

*[6] Chronic intestinal pseudo-obstruction (CIPO) is a rare and severe gastrointestinal disorder that causes the intestines to act as if they are blocked, even though there is no physical blockage. CIPO occurs when nerve or muscle problems in the intestines prevent food, fluid, and air from moving through. This can affect multiple areas of the gastrointestinal tract, including the esophagus, stomach, small and large intestines, rectum, and bladder.

*[7] Clamping Trial: A nasogastric tube (NG) clamping trial is a procedure that assesses whether to clamp an NG tube before removing it. The trial is performed to see if the patient can tolerate oral intake or gastric secretions before the tube is removed. During the trial, the patient should not experience nausea, vomiting, or abdominal distension. If they do, the NG tube should be reattached to suction.

*[8]A port-a-cath, also known as a port, central line, or totally implantable venous access device (TIVAD), is a small device that's usually placed under the skin of the chest or arm and attached to a catheter that goes into a vein.

*[9] A Mickey button, also known as a Mic-Key button or Mini Button, is a small feeding device that allows people to receive fluids, medications, and feedings directly into their stomach when they are unable to take them orally. It is a type of low-profile gastrostomy tube that sits at skin level and is held in place by a water-inflated balloon inside the stomach. The button has an anti-reflux valve to prevent stomach contents from leaking out when the closure cap is opened. Extension tubing can be attached to the button to provide feedings, medications, and to vent the stomach.

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