Update

After my last post, Zack’s doctor and I decided that it would be best to have Zack seen in the clinic.  Over the past two weeks, we have avoided hospitalization three times.  I think I needed the visit for my mental health as much as Zack needed it for his physical health.  One of the things that is hard to understand about living with a child who is chronically ill is that they can be fine one minute and really sick the next.  As a parent, it can become tricky to navigate the areas between when he is not quite himself and when he is needs to be seen.  Trying to determine when to call the doctor, when to stay home and hoping you are not putting him in danger can be emotionally exhausting.  Fortunately for us, this year we have enjoyed a nice respite from the hospital.

At Zack’s visit with the doctor we decided that it was time for Zack to have some imaging done.  We had been discussing doing this for some time.  Given his crazy high output a week prior and three days in a row of limited output (along with a prolapse thrown in to make things even more fun) it was time to be checked.  We tried to get him into radiology that day, but they were completely booked.  That made me a bit sad because the best time to see what is happening is when he feels bad.

The next morning we headed back to Walter Reed for a small bowel follow through. This test requires drinking barium.  Barium is a nasty, chalky white substance that makes Zack literally gag.  After a few swallows and a couple of gagging episodes, we decided that we should try giving it to him through his g-tube.  Have I mentioned how much I love that thing?  Maybe once or twice?

Zack’s small bowel follow through was done using fluoroscopy.  Fluoroscopy allows the radiologist to see how the intestines are moving in real time.  Zack’s intestines moved the barium pretty quickly until a spot near the end.  Then it seemed as though the barium kind of pooled in one spot and took forever to go the last little bit up and out of his stoma.  Evidently this is normal and no issues were found.  That frustrated me, but I should not have been surprised.  Zack has had this test before.  At that time he was really sick and no issues were found.  Zack’s doctor had warned me the day before that we only had a 30% chance of finding something, but still I was hopeful.

The hardest part of the test was hearing Zack ask the radiologist if she had found the problem yet.  He really wanted them to find the reason his belly was hurting.  Zack’s doctor helped put things into perspective.  He said that, though frustrating, not seeing dilated loops of bowel or obvious areas of poorly functioning intestine decreases the likelihood of needing another surgery soon.  That is a good thing!

On Friday Zack was able to attend school.  He did ask for Tylenol for his belly, but otherwise had a seemingly normal day.  Friday night he had a great time playing in the neighborhood.  I’m attaching a video of one of the many reasons I love it here (it may take a few minutes to buffer).  All of the kids were playing lacrosse when this happened:

If this does not give you warm fuzzies about how great kids are today, then I do not know what will.  Thank you to Liam for sharing this video with me.

Saturday was fun as well with a Memorial Day gathering at a friend’s house.  Zack’s stoma was really big that day, but he was running around like a maniac and having such a good time.  Sunday came and he slept until 8:30 a.m.  I had to check and make sure I was not dreaming.  Zack’s output was really high again.  He had a good day, but was exhausted at bedtime.  Falling right to sleep is not a thing that happens often here and he was out before we said prayers.

Early Sunday morning at about 2:30 a.m. (my favorite time of day..) Zack came in to have his bag emptied and was asking for ice water.  When I emptied his bag and saw that he had 600 ml in it, I was a bit worried.  I got an extra dose of CeraLyte in him, gave him an extra Imodium and two sodium chloride pills.  Then he started complaining that his belly hurt and needed to be rubbed.  Soon he was asking for Motrin and just could not settle.  He was acting as though he was going to vomit and just generally freaking me out.  I finally got him to sleep about 3:30 in the morning, but I was not thrilled.

Zack and I had a quiet morning in the basement.  He beat me at MarioKart.  I am pretty sure he cheated…just kidding.  He also spent the morning licking salt from a bowl, eating sodium pills and drinking water….as kids do….right?

See that little bowl of white stuff?  That is salt.  He licks it like candy.  See that white pill?  That is sodium chloride.  He gets 7 a day, in addition to his CeraLyte, and is often still low sodium.  That’s a LOT of sodium!

Jim and I pumped him full of CeraLyte again to help bring his levels back up.  I tell you all of this to illustrate to you that while Zack is “fine”, something is not right.  The test may show that his intestines are not obstructed, but this weird high output, no output thing is unusual.  Do we need to go to the hospital? No.  Do we need to text his doctor? No.  Do we have to watch him?  Yes.  It is hard to relax when things are just not right.

People often remark that Zack looks great.  He does.  It is hard to believe he was not feeling well earlier when they see him running around like a maniac.  It is hard for Jim and I to believe at times as well.  But, that is how it goes with him.  Jim likes to say it will either get better or it won’t.  Profound, I know.  Today we are hoping that Zack will perk up and that the sun will come out so that we can go to the pool.  We have fun things planned for this day.  And that is what we do.  We try to live each day as if everything is alright.. until it isn’t.  Otherwise we might just go crazy.

Update to the update:

Zack did go to the pool.  It was freezing!  His buddies from our neighborhood were there and he was unusually quiet.  His cousin called and invited him to our local fair.  We went.  He had fun and went on rides, but was quiet.  Zack is not quiet.  Thankfully, last night was uneventful.  I sent him off to school today with a kiss and a hug and  fingers crossed that today will be a good day.

Zack and Tom at the fair.

Hug your babies!

~ Dawn

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