Thursday

Oh Thursday, we meet again.  Last Thursday Zachary was discharged from Walter Reed after 7 days of being hospitalized. The week before on Thursday, Zack was being discharged from Walter Reed.  Today, you guessed it…Zack was discharged from Walter Reed.  I see a pattern here and I would very much like to break the pattern.  I feel good about it this time, maybe…

I have a hard time telling a story with just a few words.  It’s a problem.  I’ll try and do my best this time.  I can’t promise it will work, only time will tell.

When last we met, Zack was home and doing well.  He was happy and energetic and went to school and was like a real boy again. We had a good run.  Sunday morning Zachary woke up with a distended tummy.  Jim and I measured his stomach and took a wait and see approach.  Zack did not want breakfast, but did want to go to church. After church he asked to eat at Panera Bread.  And then he sat on the sofa.

The doctors sent us home trained in draining Zack’s ostomy for just this situation.  See this tube?

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Yep.  We get to stick that puppy into our child’s abdomen and watch stuff come out.  I am not a fan, but Zack feels so much better when we do it and that makes it easier.  Jim drained Z on Sunday at 5 p.m.  At 2 a.m. we heard groaning.  I’m sure you can guess where this is leading.  Zack’s stomach was distending quickly and at 3:45 we drained him again.  He felt better, but we made a mess in the draining process and had to change bedding, pajamas, have a sponge bath, etc.  It took a long time to get back to bed.  In the morning, he still felt sick and I kept him home from school.  Sigh.

I texted his doctor.  He said I needed to get Z into the surgeon at his next available appointment.  That appointment wasn’t until the next day, but after sleeping on the sofa all day, Z’s ostomy suddenly began draining.  He felt better.  I sent him to PT.  He was quiet, but OK.

Being a good mom, I sent him to school in the morning.  He asked for breakfast, but didn’t really eat.  He wanted to go to school.  He had missed so much already.  The school said they would call if he felt bad.  They didn’t call.

When I picked him up for this doctor appointment and saw him walking down the hall I knew…this is not good.  After signing him out of school, he asked to be carried.  In the car, he asked to go to 3 West (the inpatient pediatric ward at Walter Reed).  I was very happy we were headed to see his surgeon at this point.

At the surgeon’s office Zack was not able to be drained.  I mean, the doctor tried, but nothing would drain.  The contents were sludgy, thick and generally abnormal. Guess what he said?  “I’m really sorry, but Zack needs to spend the night on the ward tonight. I need to think about this and figure out what is going on.”

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Our GI team felt that Z had a mechanical obstruction.  The surgery team did not feel this was the case.  Two CT scans and several x-ray’s later no definitive answer could be found.  I appreciate that our surgeon did not want to operate without a clear cause.  He reminded us that Zack’s body is unique and that he did not want to do anything unless he was sure he could fix the problem.

In the meantime, the contrast from the CT scan pushed the obstruction open and Zack started out-putting (my made up word)at a rapid rate.  Until the next morning…when he obstructed again for 10 hours.  An NPO (nothing by mouth) sign went up so that Zack would be ready for surgery in the morning if necessary.  Late last night he started out-putting like crazy again.  Yay and super frustrating all at the same time.

Yay, we get to avoid surgery for now.  Frustrating because we do not know what is happening, exactly.  The latest theory is that Zack has adhesions in his abdomen that are causing a loop of bowel to pop out of place and obstruct.  Large amounts of fluids seem to pop it back into place and open it back up.  Or something like that.  I have no idea really, but I’m at least mostly right.

Here is the issue.  The only way to fix that is surgically.  It will not be a little surgery.  Zack’s body does not do well with surgery as evidenced this past summer.  We do not like surgery and would like to avoid it for as long as possible.  Plus, going in to fix scar tissue creates more scar tissue and nobody can guarantee it will work.  Further, we have to have another surgery to reattach his colon in 18 months or so.  See the problem?

The GI team and the surgery team have agreed to try a liquid only diet until Tuesday.  On Tuesday we will have more x-rays and blood work and see how things are going.

That is pretty much where we stand.  Yesterday after talking with our surgeon, I was fine.  After talking with the GI team I was fine. They had not yet limited Z’s food intake and actually said Z could have a pancake.  I tried to order one and the kitchen would not answer.  I went to the nurses station and they got through right away.  I tried to order and the kitchen said I was too late for pancakes (it was still 5 minutes before breakfast ended and I had been on hold for over 5 minutes).  The night before they forgot Z’s Gatorade.   THIS is what did me in…Code Purple!  Code Purple!   Penrod Lady is crackin’ up!

I started crying over a pancake.  Not just tearing up, sobbing.  It was pretty embarrassing, to say the least, but really not at all about the pancake.  I was just so frustrated.  I had been praying for clear answers and it was obvious that was not happening.  I was tired, my head hurt, I hadn’t showered, I was wearing my dirty clothes from the day before because Jim had not yet arrived and suddenly I was d.o.n.e., stick a fork in me, DONE.

Now that we have been home for a few hours I feel a little better.  As always, things could be worse.  I don’t really like that saying because sometimes what is happening right now still stinks.  However, I can definitely see that this is not the worst thing that could be happening.

All of our doctors have said that they encourage us to get second opinions, that Zack is a unique case.  The surgeon has been calling his colleagues at different hospitals.  Our GI team has recommended a few places to us.  But that leads me back to my initial frustration.  There is no best answer.  AND when Zack starts eating again, I’m afraid he’ll obstruct again.  It feels like a vicious circle.

Happily, I have a sane husband who tries to help keep me grounded.  He reminds me that Zack is home and happy right now.  He reminds me that we have a plan, that we have avoided a major surgery (for now), and that Z is being closely monitored.  I’m hoping that after a few good nights of sleep, some healthy food, some exercise and a chance to actually talk to Jim without Zack listening, we will be able to formulate a plan to bring to the doctors on Tuesday.

And now you are all caught up. Still wordy, but I tried. I’ll leave you with Zack’s hospital stay in pictures taken by the Z-man himself. They are blurry, but from his perspective and kinda fun.

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The Craziness Continues

I’m jumping on the blog to give a quick update about Zack.  As you are aware, he was discharged from the hospital on Thursday afternoon.  While walking to our car, Zack asked his daddy to carry him because his tummy was hurting.  Odd, yes, but we knew he was still a bit sick when he was discharged.  We knew the doctors felt he was well enough to leave the hospital, but that we needed to watch him at home and make sure we were hydrating him and letting him rest until Monday.

I had a PTSO meeting Thursday evening, but Jim and Z played trains quietly on the floor while I was gone.  Zack ate some Ramen noodles, had a bit of a fruit smoothie, but did not want Gatorade.  He loves Gatorade.  He complained a bit about his stomach, but nothing major.  However, after 6 p.m. there was very little output from his ileostomy.

Friday morning Zack woke crying in pain at 6 a.m.  I brought him into our room and tried to get him to settle down.  He kept saying his stomach hurt “in the middle” and that he wanted me to call his doctor and take him back to the hospital for an IV.  This was not a good sign.  I  asked Zack to let us look at his stomach and it was hard and a bit distended.  That freaked me out and then the vomiting started.  Jim and I agreed we needed to take him back, so we texted his doctor and off we went.

Zack was vomiting every 5-10 minutes and crying about his stomach as we drove and looked very unwell.  Jim and I were extremely concerned and frustrated and worried and scared.  His stomach looked very similar to his stomach after his first surgery this June.

Got to Walter Reed and went straight to the GI clinic.  Our new to us doctor came in the room, saw the barf bag asked a couple of questions and said he was admitting Zack.  I was relieved because there was no way we wanted to go home with a child that sick.  The clinic started an IV right there and then took us straight to radiology for x-rays and a fluoroscopy.  The doctor wanted to see not only if there was an obvious obstruction on x-ray, but also to see in real time how things were moving in Zack’s small intestine.

We learned that there was not a mechanical obstruction like a kink or twist to the intestine, but that Zack was suffering from a pseudo-obstruction of the small bowel.  Here is a link, let’s hope it works:

http://digestive.niddk.nih.gov/ddiseases/pubs/intestinalpo/

Zack is now on PPN (peripheral parenteral nutrition) which is similar to the TPN he was on this summer, except instead of being through a picc-line, the PPN is given through a vein.  He can not have anything by mouth for a few days.  Originally, we were going to try sips of clear liquids today, but his stomach was too distended and his output was non-existent after 11:30 this morning.  The resident on duty this evening along with our awesome nurses drained Zack’s ostomy manually with a long rubber tube and got 660 ml out.  That is a lot.  We are waiting to see what happens next.

Our main doctor has agreed to move Zack’s endoscopy to Tuesday.  Z has a cough, so we are unsure how anesthesia will feel about this.  If they are not comfortable with Z going under general anesthesia, the doctors will do partial endoscopies through both stoma’s and not go through the mouth or bottom so that he can be awake for the procedure.  This will allow some biopsies to be done now instead of waiting.

Zack’s small bowel is very dilated.  I think the loops measure 4.83 cm across and large for an adult is over 4.  Don’t quote me.  The intestines should have shrunk down by now and have not.  This is concerning.  The doctor told us that we are in uncharted territory with Zack now.  He said that he would encourage second opinions, but that he feels confident most people would do what they are already doing.

We have no idea how long Zack will be in the hospital.  We worry about school.  We worry about Jake.  We worry about what will and will not be found.  So many unknowns.

I’m hoping that you will all check the blog for updates and forgive us if we do not call you each individually.  We are focused on getting Zack better and hope this will allow us to communicate with you all efficiently.

I’ll leave you with one of my favorite Bible verses.  I keep repeating it to myself and I hope maybe it will help someone else:

Have I not commanded you? Be strong and courageous! Do not tremble or be dismayed, for the Lord your God is with you wherever you go. –Joshua 1:9

Holding Steady

Yep, that’s right.  Holding steady.  It’s better than sliding back.  Not quite moving ahead, but  we’ll take it.  My days are a bit blurred together, so forgive me if I have it out of sequence.  Wait, you won’t know!  Ha!  What a relief.  I’ll do my best to give you Zack’s update and as a bonus, I’ll throw in a few cute pictures.

Come on…how cute is he?

When last I typed, things were pretty rough again after a day and a half fake-out of happiness.  The surgery team thought a lot about what their next step should be and ultimately decided to do a CT scan with contrast to check for an abscess.  Z had been looking unwell, lacking energy, sweating and having a good amount of pain.

The results of the scan were both good and frustrating.  We know Zack does not have an abscess.  That is super good news.  We know there isn’t something visible blocking his intestines which would account for their lack of motility.  The frustrating part is that his intestines are not moving.  As I understand it, we still don’t know what is causing the problem.  His entire intestinal tract is now dilated except for a small bit near the stoma opening.  Because they are so distended, radiology will say he has an obstruction, but is it a true obstruction?  That is a question we cannot answer yet.  Since he had a CT with contrast, Zack will have x-rays over the next several days to see if the fluid moves at all.  If it moves, it could show a place where it stops and thus indicate an obstruction we can’t see right now because of the swelling.  If it doesn’t move it could be a motility issue.  We really can’t guess or plan until we have more information.  I’m a planner.  I do not like this.  Jim is a calm, mellow fellow and he is OK with not knowing what comes next.  I also think this is because we DID rule out some serious health concerns….again….good.

I really appreciate the surgery team and how honest they are with us.  Even though I feel frustrated with not knowing, at least I know they are on top of his care.  In addition, today they found out that Zack’s albumin level is low.  Again, I’m not a doctor or a nurse or a dietician, so I copied this from WiseGEEK.org:

Within the human body, albumin is an important component of life. It transports essential fatty acids from adipose tissue, otherwise known as fat, to muscle tissue. The protein also contributes to the regulation of osmosis, helping to transport hormones, drugs, and other substances through the blood. A deficiency can lead to medical issues, and medical professionals may request a blood albumin test when investigating a patient’s medical condition.

Zachary’s surgeon is working with the dietician to get this level figured out.  They also discovered his iron level is pretty low, but not  low enough to require a transfusion.  Um, yes, let’s hope we can skip that please!

So, here we are…holding steady.  Zack can’t leave the hospital because without machines sucking gunk out of his stomach, fluid being drained from his stoma and nutrition through a PICC Line, he couldn’t survive.  BUT he isn’t “sick”.  We just have to wait for his body to decide to kick in or for something to show up on x-ray that would indicate another issue.  He had a bit more energy today.  He has colored pictures for his nurses and doctors and is currently playing with cars.  He is pale and has sunken eyes and his tummy still hurts, but we can deal with those things.

Now the question is, how will tonight go?  Don’t worry though….my family and friends have been increasing my chocolate stash.  Now if I could only bank sleep I’d be all set.

Dawn

Update

I wrote most of this last night before Z went to sleep.  He had a pretty tough night.  Lots of pain.  The first time it was managed by flushing his NG tube.  Everything in Z’s stomach has to be suctioned out or it will continue to build up since it does not have a place to go.  It is collected in a container and measured every two hours.  Whatever comes out is then replaced with IV fluids.  This is what the container looks like:

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Zack also has his heart rate and breathing monitored continually with pulse oxygen levels every four hours.  The pulse ox thing is just because he is not a fan of the monitor and they can tell he is doing alright.  The machine:

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And finally, Z has his IV pole.  There are typically 3-4 bags of things hanging there.  This picture shows 4.  One is the fluid replacement which is mixed in the pharmacy according to what the morning labs show he needs.  The big brown one is the TPN mixture minus the lipids.  I’ve been told the lipids and this bag not mix well, so they are separated out.  The white milky stuff is his lipid bag.  The 4th thing is medicine.  They mix this one up.  Sometimes it is a pain medicine and sometimes he gets Protonix, which is like Prevacid.

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Ooops.  Sorry, went on a rabbit trail, but thought you might like to see all the “stuff” Zack has monitoring him.

Shortly after the NG tube was fixed, Z was in a lot of pain.  He was moaning and squirming and crying.  His nurses were surprised to see him in so much pain.  The Surgeon of the Day was called and drained another 250 ml from his stoma.  He was drenched in sweat and we had to change his bedding and pajamas, etc.  I think we finally got him settled and sleeping by 2:30 and he slept soundly the rest of the night.

The surgeon came in a little bit ago and gave us our new plan.  If nothing changes for Zack today, he will go back to the Pediatric Sedation Unit tomorrow for another procedure.  This time his doctor will insert a scope into the stoma so that he can examine the intestines and see where the fluid is building up.  He thinks it is possible that because his small bowels are so distended, one of the loops may have collapsed in onto itself.  He does not anticipate Zack needing any other surgery.  I hope he is right.

We are extremely ready to check out of this fancy hotel.  It’s been nice and all, but we are d.o.n.e.  Hopefully we will be able to give some good news tomorrow.  I wish you all a great day and remember to hug your kids!