Zachary’s Tune Up

Remember my last post? ¬†You know, the one where I talked all about Zack having a good day? ¬†Do you remember how I wrote about Zack eating a turkey sandwich and loving it, but then having some pain? ¬†Yes, well….it did not end well.

Zwr8This is Zack on Monday afternoon.  This is Zack Monday evening and Tuesday morning and Tuesday evening.  I bet you are getting the idea.  To make things more fun there was vomiting and blood.  Oh, did I forget to mention that Daddy was in Germany?  We know how to do fun around here.

Happily, Zack’s GI and I talked and decided it was time to admit Zack for a tune-up. ¬†After 5 1/2 weeks of not feeling well, we were getting worn down by the daily pain and the bleeding and the lethargy. ¬†I was actually really relieved that Zack was going back to the hospital and hoped that we would be able to figure out what was going on with our guy.

We learned that Zack’s iron levels were pretty low, so he received an iron infusion of Dextran. ¬†We were told this drug would help improve his iron levels in a few days and his lips are actually almost pink again.

As I have mentioned before, Zack’s nutritional status….well…it was/is stinky. ¬†Zack had an NG tube inserted so that he could receive enteral feedings. ¬†That made him sad, but I think he has become resigned to the fact that he needs the tube to feel better.

Today Zack had a scope under sedation to see if the doctors could figure out why he keeps bleeding. ¬†I told his doctors that I was praying that they would find something and I was not lying. ¬†It has been frustrating watching Zack in pain for so long. ¬†It has been hard to see him like that and to know something is wrong, but not to know what “it” is or how to make him feel better. ¬†I found myself feeling anxious that Zack would have the scope and the doctors would not find the source of the blood.

Happily, they found something. ¬†I realize that sounds a bit crazy, but honestly, I was so relieved that there was a reason for some of Zack’s symptoms. ¬†I have not had time to research or ask questions or anything, so here is the very little bit I know. ¬†The site of Zack’s rectal anastomosis (reattachment) has developed a stricture. ¬†In English, his reattachment site has narrowed. ¬†Instead of being a big circular pipe, it has now constricted and become a little pipe. ¬†This makes getting stool through problematic. ¬†It is also irritated and bleeds easily.

The part I do not know is what the heck we will do about it. ¬†Zack’s doctors here and his surgeon in Cincinnati will come up with a plan soon. ¬†I do know that treatment will most likely involve dilation of the area with balloons of some sort. ¬†This procedure will require sedation, but most likely not surgery.

Zachary is not handling sedation well at the moment.  He gets very upset and starts hitting, kicking, biting and screaming.  It is very overwhelming to him and to me and it makes me very sad.  I asked him about his behavior after his procedure today and he told me that the sleepy juice makes him feel funny and he does not like it.  I cannot say that I blame him, but his behavior is out-of-control and Jim and I are struggling with how to help him.

Speaking of Jim, Zack’s day was made ten thousand times better when his sidekick came straight from the plane to see his boy. ¬†Zack informed me that I should head home because “Robin” was back. ¬†Zack is Batman after all. ¬†I was worried “Robin” might be exhausted by the time change and plane ride, but he reassured me he was ready to spend time with his boy.

I hurried home in the pouring rain….or crawled home at 40 mph…you decide. ¬†When I got home, Jake Penrod had the entire house cleaned. ¬†My floors were vacuumed, the dishes were done and the yard was mowed. ¬†I mean, come on! ¬†How great is that? ¬†So, thank you, Jake. ¬†You made your tired mama proud.

One last thing…tonight is my first night home since last Wednesday. ¬†My computer was not able to find the wireless connection at Walter Reed. ¬†My sisters gave me a lot of technical mumbo jumbo as to why, but I heard blah, blah, blah. ¬†All I know is that I cannot write any blog updates while we are at the hospital unless I want to try to write them on my tablet. ¬†That will never happen. ¬†Now that Jim is back and we are back to our alternating night schedule, things should get back to normal. ¬†Hopefully, Zack will only be at the hospital until Friday. ¬†Fingers crossed!

I am off to my comfy bed to get some good sleep. ¬†But first, I’ll leave you with some pictures of our stay so far:


Zack and Jake reenacting a scene from Star Wars


The Hero


Big Brother soothing his buddy.


Super Heroes


Zack and Aslan the Leonberger Puppy

Getting Closer To Home

What a week!

That’s all I could think of to say about that.

Seriously though, it was a crazy week. ¬†We have been blessed to have a great PICU team here. ¬†We thought we would be in the PICU for only one night. ¬†It’s Friday now and we are still here, BUT if all goes well tonight we could be back on the ward tomorrow. ¬†Keeping our fingers crossed!

Yesterday Zack needed to have a blood transfusion. ¬†It was a strange feeling for me. ¬†I didn’t really expect that. ¬†Strange to think about Zack receiving someone else’s blood, but also thankful that someone donated blood. ¬†The process of the transfusion was interesting as well. ¬†The blood is triple checked. ¬†First the nurses pick up the blood from the blood bank where both Zack’s blood type and the bag of blood are checked by two people to make sure it matches. ¬†Then the blood is walked to the ward where it is checked by two more nurses to make sure it all matches and once more before the blood starts to be administered. ¬†When the transfusion begins, the nurse starts the blood slowly and then checks vitals every 5 minutes for 15 minutes and then every 30 minutes after that to make sure there are no signs of allergic reactions. ¬†The whole process took 4 hours and was just like any other IV fluids except, well, it was blood….which made it different.

Zack also had a little fever yesterday before the transfusion as well as after, so he had a blood culture done. ¬†As a preventative measure, Zack was started on both Vancomycin and Flagyl in addition to his Zosyn. ¬†These antibiotics were added because Zack was at risk for infection from his surgery, his PICC Line and his catheter. ¬†These people don’t mess around. ¬†He’ll be on the newest two for 48 hours while his blood culture is monitored for infection. ¬†We don’t think he has an infection, but since he is at high risk this is what we do.

Today finds us getting closer to leaving the PICU. ¬†Zack was able to get rid of both his catheter and NG tube today. ¬†In addition, he was allowed to lick a popsicle and have very small sips of Gatorade. ¬†Here’s a first look at his popsicle experience:

Another big thing that happened today was that we started trying to wean Zack from the heavy drugs he’s been taking. ¬†First, we completely stopped giving him the Ketamine. ¬†Next, we successfully went from giving Dilaudid every 2 hours to every 3. ¬†It was tough though and we needed a lot of diversions. ¬†Check out some of the things we did:

A visit from Sgt. Archie the therapy dog.  We like therapy dogs.  Who knew they could come into ICU!

A visit from some clowns.

Look at the hat they gave Zack!

Zack also had the Child Life Specialist come and play for a hour. ¬†They painted sun catchers and made necklaces from beads and other things to keep Zack’s mind off how many more minutes were left until he could have pain medicine. ¬†Yesterday they made a bus shaped piggy bank. ¬†To help Zack feel more in control of all the people who poke his belly, they came up with the idea of making people “pay” Zack for the chance to touch his tummy.

Zack plans to use his money to buy a red convertible Mustang Power Wheels big enough for a 6 year old. ¬†Jim and I think that is a fine idea. ¬†I think he has $2 so far, but I’m pretty sure he has us wrapped around his little finger at the moment. ¬†We aren’t usually such big softies, but I’m pretty sure there will be a red convertible Mustang Power Wheels big enough for a 6 year old in his future. ¬†I’m also pretty sure it will be one of the best things we ever buy.

Looking forward to a great weekend and the real possibility of getting home next week!


Quick Update

Zack is out of surgery and in the Pediatric ICU overnight for a blood transfusion and observation. Surgeon resected his small intestines, made a new ileostomy and sent the old section off for deep tissue biopsy and motility testing. May have some lingo wrong, but will correct later.