Where we are Now

I don't even know where to begin to explain our journey since our hospital stay last week.  I can honestly say this is one of the most difficult journey's I've had as a parent.  And that is saying a lot because I've flown on a 24 hour flight journey from Ethiopia with twin 7 month old boys that didn't sleep.

Watching your child in pain and not being able to do anything about it is the worst feeling ever.  Knowing they have to go through surgery, and recovery, and more surgery and more recovery is awful.  You just want to go through the whole thing for them.


On Monday I received the call from Kyrie's surgeon with the results from his biopsy.  He told me that Kyrie does in fact have Hirschsprung's Disease.  This is a rare disease of the intestines that doesn't allow your bowels to relax and pass stool. The nerves are there to tighten, but not to relax.  So no matter how much Kyrie tries to go on the potty, he's never successfully been able to poop.  This has been extremely frustrating because he has been "potty" trained for quite some time.  He has been working so hard at it, and it wants nothing more than to just poop on the potty.  And while we were happy to have an answer to his problem, Hirschsprung's was not what we were hoping and praying for.

We have been seeing someone in the Gastroenterology department at DeVos for quite some time, making little progress for Kyrie.  Finally, we scheduled the barium enema, which lead to an overnight stay at the hospital.  Which I wrote about here.  Which lead to the biopsy and these results.


So after the surgeon called with the results, David and I spent the next day in his office for a consult.  We had a million questions.  We still do.  It's a complicated disease, that can mean a lot of different things for different kids, depending on the severity of the disease.  It's something that in the United States is usually caught in the first 48 hours of an infants life.  Because of Kyrie's journey in life, it took us quite a bit longer to get here.  

Kyrie had his first of two surgeries yesterday.  He had to come in Thursday for a clean out, which was rather disastrous.  It consisted of one horrific procedure after another.  Lots of tears were shed and very little clean out process was made.  Due largely in part to Kyrie having Hirshsprung's.  We got very little sleep Thursday night at the hospital because Kyrie was in a lot of pain.  The next day we sent Kyrie into surgery feeling pretty anxious.  For this first surgery, the surgeon had to determine where the diseased part of the intestines ended.  He did this by making some small biopsies as he went.  A pathologist was in the operating room checking the samples on the microscope as he went.

Since Kyrie's intestines have been dealing with constipation for over four years, they are very stretched out (to 4X the regular size) and are not performing at their highest potential.  For this surgery, Kyrie has to have a colostomy bag put in.  This way his intestines will have time to rest, hopefully shrink back to regular four year old size, and get back to their best squeezing ability.  After two months or so, Kyrie will have a second surgery to remove the colostomy and put his intestines back where they belong, without the Hirschsprung's diseased parts.

Pre Surgery Snuggles

We're out of surgery now, and recovering in Kyrie's room.  We have to stay here until Monday - which seems like an eternity away.  We have to make sure Kyrie is eating well and his stoma is working properly.  We also have to make sure Dave and I have learned all the proper care for Kyrie's stoma and colostomy bag before they'll let us leave with him.  Which is a good thing.  But my boy is already aching to go home and be with his brothers.

Pre Surgery Nap

I could not be more proud of my boy.  He has been through SO many awful procedures.  They were necessary, and the doctor's and nurses here have been wonderful.  But the procedures have been awful.  AW. FUL.  He's had two surgeries in two weeks with another on the calendar.  He's had multiple IV's and tubes requiring the application and removal of adhesive tape and band aids.  This might not seem like a big deal, but it is HUGE.  Taking off any kind of tape, band aid, or adhesive for Kyrie is like scratching him with knives.  He's hysterical.  I don't even use band aids at home for this reason.  And when he gets them for immunizations or something they stay on until they come off naturally in 3 months.  We have to take extreme care when dressing or touching him near band aids in the rare chance we might accidentally touch it and give the false impression we might remove it.  So the tape thing has been a big deal.

And through it all he's been such a brave boy.  He woke up from surgery with a colostomy bag.  We did our best to prepare him, but it's hard to explain something like that to a four year old.  And I think most adults would struggle with this change, and take some time getting used to it, let alone the body image concerns.  Kyrie has been a rock star.  He was a little nervous about it at first, but has been doing great with it.  He talks to me about it and doesn't seem to have a problem with it at all!  So amazing!

In Recovery after surgery

So now we recover and wait to go home.  We want to thank you in advance for all the prayers and encouragement.  We are feeling so supported by our friends and family and could not possibly manage this without you.  So thank you.  Thank you for the visits, the gifts for Kyrie, caring for our other children, meals, prayers, gift cards, support, and love.  We seriously can't thank you enough.

At this point we can really still use your prayers.  Please pray that Kyrie's body can get back to normal in two months so we can get the second surgery done and recovered from before the new baby comes.  I want Kyrie to be able to have all our attention, and I want to be able to stay in the hospital with him during that surgery.

Finally eating

Please pray that Kyrie continues to do well with the colostomy.  I know the day to day care will be fine. But every few days or so I have to replace the equipment.  Which includes a significant amount of adhesive removal, cleaning, and reapplying.  I don't know if I can bear hysteria every few days.  It truly doesn't cause him significant pain.  He's just afraid of it.  Pray for peace for him while I have to do that over the next few months.

And just pray for our family.  I worry about Kingston and Ezra and being away from them for four nights.  And then again for the second surgery.  I know they are being well taken care of, but I fear they don't understand where their parents and brother are.  Pray for David and I as we try to juggle the multiple doctors visits, surgeon consults and appointments scheduled.    And pray for Kyrie to continue to get better with each passing day!

And on top of this crazy history of our stresses the past week and all these prayer requests, we have so many praises.  We're thrilled to have a diagnoses that is treatable.  We're so lucky to have such a wonderful Children's Hospital in our backyard.  The timing is such a blessing because I can be available for hospital stays and 24 hour care once we're home.  This has been such an ongoing problem, and this diagnosis could have come now, or 5 months from how.  We're so glad that it's happening now, before the baby is born so we can have everyone in top health before the littlest Stefanich joins the chaos.  And we're so blessed by our family and friends.  Thanks again for keeping us in your prayers.

Happiest boy ever once he got some Fruit Loops

Lots of naps for my boy