Life At Home

Some interesting (to me) statistics about Zack’s hospital stay.

  • Number of nurses and medics who cared for Zack on the Pediatric Ward: 22
  • Number of Ward doctors: 4
  • Number of Surgeons: 2 – but only one operated on Z.
  • Number of Surgical Residents: A lot, but 3 main ones.
  • Number of Surgeon of the Day (Came at night when we had issues, which was a lot) care givers: 3
  • Number of PICU nurses: 10
  • 1 Main PICU physician, 2 PICU Physician Assistants and 1 Resident.
  • Number of GI Doctors caring for Zack: 5…saw 3 most days.
  • Number of Anesthesiologists:  5
  • Number of People on PICC Line/Pediatric Sedation team: 4
  • Number of Radiologists: Not sure, but we had a LOT of xrays and one CT scan.
  • Ostomy Nurses: 2
  • Other Health Care Professionals Z saw most days: Inpatient Dietitian, Child Life Specialist and Social Worker.

I find this interesting because it took a lot of people to help Zack get better.  We are super thankful for all of them.  I’m sure there were more that I just can’t think of at the moment.  It also leads into my story of being home and what that looks like.

We have been home for 5 days.  It has been both wonderful and super hard.  We were well prepared to come home.  Our doctors and surgeons and ostomy nurses trained us well.  We felt confident it would be pretty simple to keep up with all that needed to be done.  We couldn’t wait to get home and sleep in our own beds, eat our own food, shower in our own shower, you get the idea.

The drive home was great.  When we got home, Zack had bled through his staples and soaked the bandage.  His bag had leaked and stool was everywhere.  His fistula stoma on the right side of his abdomen was irritated and bloody as well.  Welcome home!

Luckily, I was able to get in touch with the Pediatric Ward and one of my favorite nurses answered.  I was able to send a photo of the blood and she was able to help me get the situation under control.  Have I told you how wonderful the Pediatric Ward 3W at Walter Reed is yet?

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You may be wondering what our first few days were actually like.  Let me start by telling you that Zack’s case has not been “typical”.  His body has not responded as expected along the way.  Things have been a little frustrating.  That being said, I think there are probably some lessons for other families that would be helpful.

First, new ileostomies are time consuming.  We are still measuring output for our doctors and ourselves so that we know what is normal for Zack.  This means when the bag is ready to be emptied we measure the “contents” into a urinal and record the amount.  Zack then needs to be cleaned up.  This is pretty easy and just involves wiping the mouth of the bag out with a wipe….as long as there isn’t a leakage issue.  Sometimes we have to flush the bag out as well with a big syringe and water and this adds a couple of minutes to the routine.  Luckily, this can just be emptied directly into the toilet and then we wipe the mouth of the bag and we are done.  Don’t forget we still need to empty the urinal, clean the urinal and wash our hands.

I suspect that once we are done measuring output, this time will be drastically reduced.  We are getting pretty good at emptying the bag and wiping it out.  Once that darn urinal is gone, I think this part of caring for an ostomy will be the same as any other potty break.  I hope.

A bigger issue for us is that the appliances we are using for Zack are not sticking well to his skin.  He currently uses the Hollister Pouchkins two-piece bag and wafer.

 

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Our ostomy nurse has told us that we should expect to get 3-5 days from this appliance.  We are lucky to get 24 hours.  That is super frustrating.

Taking an old appliance off and putting a new one on takes time.  Especially if it is new to you.  Today it took an hour and a half.  Granted, some of that time was also taking care of other wound care, but come on!  That is a long time.  Especially to have it fail in less than 24 hours.  Add to that the fact that it is not a comfortable thing to do.  It is incredibly sticky and takes lots of adhesive remover to take off.  Then we have to wash the skin, but only with Johnson’s baby wash, and let it dry completely.  After that, skin barrier wipes are used to help the new adhesive stick and they have to dry.  Then we warm up the wafer and attach.  Zack’s skin is still sore from having the last one removed the day before and is now red and irritated….and so is he!  Here is a look at our operating room.  We set it up every day:

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I know you are jealous of how fancy it is!

Here’s a look at the supplies needed to change Zack’s ostomy appliance as well as the supplies for wound care.  The Motrin is added because Zack knows it will hurt and so he asks for it before we begin:

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We are lucky to have an awesome set of ostomy nurses at Walter Reed.  They have been working hard to help us find a solution to the problem.  They are also good at helping me feel like I know what I am doing and keeping me sane.  Mostly.

When an ostomy appliance fails, it isn’t a pretty thing.  If it fails at night while your mom and dad sleep, you will be covered in a mess by morning.  Now not only does the ostomy need attending, so does your bedding and your jammies and….Thank goodness for the air-freshner we got from the hospital.  I need to google the stuff and buy more.  If you add in a bunch of staples in your abdomen and a fistula and stitches on your right side, there is a lot that needs to be kept clean.  We have more bandages and tape and scissors than you can imagine.

I realize that this sounds like a lot of complaining.  I’m just trying to keep it real.  This is what it takes to do life at the moment.  At the hospital we had over 15 people a day at our personal beck and call.  If Zack wouldn’t drink his Pediasure, something else was found.  Bandage didn’t work, the ostomy nurse was on it.  Blood oozing out of staples, surgeon was on it.  Need a diversion to keep his mind off how much time was left until pain medicine, the Social Worker came to play.  At home, we have to figure out what is OK and what needs attention.  Do we take him back in?  Will the stool on his staples cause an infection?  How do we wash those if they can’t get wet?  Is he getting enough fluid?

Jim keeps reminding me that we are smart.  We are doing the best we can and we will figure it out.  He is right of course.  It will just take time.  It’s only been 5 days.

Lest I leave you feeling sorry for us,  yesterday was a great day.  Zack had his PICC Line removed after his blood work was checked.  No more heparin flushes at home!  It seems like we have been doing a good job of watching his fluid intake.  His surgeon said we might be doing “too good” a job as his sodium level was a little low.  I find that hard to believe with the amount of Gatorade that boy has been drinking.  Zack also got his staples removed and his stitches out.   We still have some wound care to do each day, but we are getting closer to only having to worry about Zack’s stoma and fistula.  Actually, a fistula is a kind of stoma, but for our purposes we call the ileostomy Zack’s stoma and the other one his fistula.

To celebrate, we went to see Monsters University.  Historically, Zack does not do well in movie theaters.  It’s hard for a guy to sit still that long.  It’s hard to pay attention for that long.  Yesterday he sat and watched and giggled and was happy for the entire movie.  It was such a blessing to see him so happy and excited.  So, one baby step at a time.  One day we hope this will be second nature.  For now, we will rejoice in the fact that Zack is getting better and most importantly, that Zack is home.

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Dawn

0 thoughts on “Life At Home

  1. So good to hear from you. You are doing fantastic. I do know how frustrating an ostomy can be. Have changed and dressed, prepped,,powdered, pasted, taped, blow dried the skin, used every trick there is, believing to have found the perfect method, only to have it leak within a few hours, when you have several other patients who need you too. That’s a nurses perspective. Just remember you have your precious little guy at home, and it is and will get better. Again, you are Supermom and no one could have done any better than you have. I believe you have proven to be extremely patient, strong, and the best Mom to Zach he could ever have had. Keep trusting our Lord to continue to carry each of you thru this. You are an inspiration for sure. Continued love and prayers, Sarah’s mom, Emily.

  2. You knew it would not be easy, but I know you and Jim will find your way with Zack’s care. We’re just so glad he’s home and I’m sure he is, too. The picture of him smiling at the front (?) door says it all. We’ll keep praying, along with our friends and prayer team. I look forward to seeing you all soon. Love and hugs.

  3. Barb is a friend, my maid of honor actually! I am so pleased Zack is doing okay. Getting used to everything is a challenge for sure. His pics make him look he is always happy. Mu must be doing something right. Worry not.

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