The Family Plan

If the forecast calls for a blizzard, you might as well plan on some Penrod drama.  During the height of the Blizzard of ’97 in Colorado Springs, our son, Jake, decided it would be the perfect time to enter the world.  The fact that every blasted thing on base was closed, the streets were impassable and the hospital said not to leave our house made no difference to him.  Happily, everything worked out and Jake was delivered safely.

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Ten days ago as the forecast was predicting the Blizzard of ’16, I thought that I had food poisoning.  After 24 hours of that fun, Jim decided I needed to go to the hospital.  I figured it was either that or death, so I took my chances.  Turns out I had a partial small bowel obstruction.  I assure you, the irony was not lost on me.  The hospital admitted me, Jim made sure I was settled in my room and that I was, in fact, not going to die or need surgery right that minute and hurried home to beat the storm.  Zack requires a lot of maintenance on normal days, we did not want Jake to try and take care of him during a blizzard.

Saturday as I was in my hospital bed realizing that Zack is much stronger and way braver than I, my phone rang.  Jim was calling to ask me the phone number of our friend who happens to be a physician.  Um…. Jim does not worry.  Jim does not freak out.  Jim NEVER calls the doctor.

Turns out Zack was pretty darn sick.  He had a little stomach bug overnight and woke up lethargic and looking pretty awful.  After watching him for a few hours and watching the snow falling faster by the minute, Jim started to realize that Zack needed help.

Our friend, Sarah, soon arrived and took Zack’s vitals and they were not great.  I guess his heart rate was in the 140’s and his systolic pressure was 50.  She called the paramedics to see if it would be possible to get some IV fluids and some Zofran for Zack (thank goodness Z has a PICC line).  Normally, the paramedics would not do that without transporting Z to the hospital, but the blizzard was pretty bad.

When they arrived, the ambulance got stuck in our neighborhood.  We live in a great subdivision and word got out that we needed help and soon many neighbors were digging the ambulance out and sending it on its way.

Sarah stayed with Jim and Zack until she was sure everything was going better.  Jim put Zack to bed and all was well until Zack climbed into bed with him around four in the morning.  Jim said that those were the only steps Zack took during this whole time.  In the morning, it was obvious Zack was not doing better.  Sarah came back down and she and Jim decided that Zack needed to get to the hospital.

Once again, our neighbors came to the rescue.  One of our neighbors has a snow-worthy truck and he volunteered to drive Jim and Zack to the hospital.  That was a big deal because our hospital is over an hour away in good conditions.

Back to my story.  I was trying hard not to get too worried, but Jim had sent me a picture of Zack and I knew he was bad.  The nurses on my floor allowed me to go down to the pediatric ward to see the nurses there.  Because Zack has been in the hospital a lot these last few years, the nurses there are our “hospital family.”  They were awesome and talked to me and helped calm my fears.

Interestingly, one of the surgeons on my team was Zack’s surgeon’s resident for his first two surgeries in 2013.  I told him what was going on and he made sure that the Emergency Department knew Zack was on his way.  He arranged for me to have a hospital pass to leave the floor and meet Zack and Jim when they arrived. He also arranged it so that I could stay with Z in the PICU.  My nurses even came down to the PICU to take my vitals and bloodwork so that I did not have to go back and forth.  I cannot even begin to tell you how amazing that was.

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Getting an X-ray in the Emergency Department.

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Two of Z’s amazing PICU nurses.

Zack was admitted with a very low sodium level and dehydration.  We would later learn that his sodium level was probably not quite as bad as we originally thought.  We could tell that from some later tests, but it was still not great.  While he was in the PICU, he was able to see President Obama land on Marine One at the hospital and thought that was pretty cool. He was soon transferred to the regular pediatric floor and has been there ever since.

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Puppy therapy makes everything better!

I’ll save that story for another day.  I will tell you that he is still in the hospital and doing well.  The doctors are working hard to get his sodium levels and output under control and investigating a few other things.  We anticipate that he will be coming home in the next few days.  I am not able to update this blog there because my computer will not connect to their wifi and the wifi on the pediatric floor stinks.  I promise to update more once we are home again.  Until then…

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Hug your babies!

~ Dawn

Surgery #9 – I’ll Be Home For Christmas…

Ah….the ever-changing plans of Mr. Zack Penrod.  After planning to be gone for Christmas, packing all of our gifts, arranging hotels and wrapping our minds around celebrating in a new place, we are back home.  I have to say, there really is no place like home.  Our beds are cozier, the food is better, we have more space and we can lounge around all day in our pajamas (well, we could…). 

Zack has been feeling OK since his discharge.  He did not feel great on our ride home.  He looked sick and his stomach was hurting.  When we stopped for lunch, he asked Jim to carry him and he barely touched his food.  It was his first day off of pain medicine and fluids so this is not really surprising.  We may also have forgotten to pack Tylenol….not that we would have done that after all this time.  Sigh.  Poor Zack.

When we got home, Zack’s friends were outside and gave him a cheerful welcome home.  Zack managed to stay outside for about two minutes before declaring he was cold and tired – it was 62 degrees.  He has been sleeping sitting up (his belly pain position) since we got home. Luckily for Z, we actually have pain medicine at home AND give it to him when necessary.

Yesterday was a little better.  We finally made it to Sports Clips for a much-needed haircut.  In between turning pale and not being hungry, he had several bursts of energy that were so amazing his brothers declared themselves in time-out to escape the craziness.

We are working on figuring out this new mucous fistula.  Unfortunately, it sits at the bottom of his abdominal incision right where the waistband of his pants hits his belly.  His surgeon said she put it there to cut down on the prolapsing risk.  Another thing that might prolapse?  Awesome.

Our biggest issue at the moment is keeping up with his crazy output.  We have to start giving him bolus fluid doses through his g-tube to keep up with his losses.  He currently has his dehydrated look going on, but we feel confident we can handle it here at home.

We also had our first visit from Zack’s new Home Care nurse.  His PICC line dressing needs to be changed once a week.  Since it is a sterile procedure, I am not qualified to do it by myself – thank goodness.  I am sure I could learn.  I have been told that some families do it themselves.  I am just grateful that someone else is doing it for him as I do not feel comfortable messing with a line that ends right near his heart.  I would much rather have someone take over that responsibility!

Now that we are home, this family of mine actually expects our Christmas traditions to happen.  You know, the food part.  Trying to pull together all of the things we do for Christmas would be pretty hard, so we took a poll and picked some of our favorite things.  Today we will make two Christmas goodies, have our normal Christmas Eve fondue before church and homemade cinnamon rolls for breakfast on Christmas morning…or candy from our stockings. Come on!  You know this happens!

Our awesome next door neighbors have invited us to share their Christmas dinner with them.  I am not sure who is more grateful for the invitation, me or my guys.  Thank goodness for friends who see our weary faces and extend kindness.

Do not let our lack of energy fool you, though.  The Penrod family is counting our blessings this Christmas.  We have been overwhelmed by the outpouring of love so many have shown us. I get teary even thinking about it.  Santa coming to visit Zack on the fire truck, classmates cheering for Zack, friends giving Zack encouragement, invitations to dinner, packages and cards arriving at the hospital, doctors and nurses working hard to get us home for Christmas, all of these blessings….we are so thankful.

So while Zack may not back to normal, he is incredibly happy to be home and counting the hours until the “jolly old guy” arrives.  He wants to be allowed to sing tonight at church because, “Ms. Judy is counting on me to be there to sing to all the people about baby Jesus!”  And that, my friends, is the real joy of Christmas.  The birth of Jesus.  I am so thankful that we are home and that Zack will get to sing tonight and share his joy with others.  May we all have such childlike faith!

Merry Christmas!

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~ Dawn

 

Zack’s Surgery Update – October –Surgery #3

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Friday Morning.  5:30 a.m.  Don’t we look chipper?  Our son, Jake, created an event on Facebook called Blue Friday.  He invited his friends and my friends, and they invited their friends, to wear blue on Friday to help remind people to pray for Zack and his surgeons.  Our family was overwhelmed with the response.  Thank you to all who participated.  Jim and I wore blue as well.  Here we are just before heading down to surgery Friday morning.

Zachary’s surgery ended up taking 3 hours.  I was fortunate enough to be allowed to go all the way into the OR with Zack and to stay with him until he was asleep.  I was amazed at how many people were actually in the OR.  Zack had two anesthesiologists.  One worked the general anesthesia aspect and the other worked on Zack’s epidural.  Zack’s surgeon was there as well as his residents.  The head of pediatric surgery was there.  Our GI doctor was there and a host of other people I should probably know, but they were all masked up.  I felt confident he was in great hands as I left, but it was still hard to leave.

During the surgery, our GI doctor came and gave us a little report.  It was comforting to get some news that way.  The head OR nurse called and let us know that surgery was going well and that Zack was stable.  She called again to let us know they were getting ready to close and things were still going well.  Happily, Jim and I were able to wait in Zachary’s room.  I was able to shower, we were able to eat breakfast and just hang-out together in private rather than in the big OR waiting room.  I appreciated that because I find that waiting room incredibly stressful.

When Zack’s surgeon came to get us, he looked happy.  That helped me relax right away.  He explained that when they opened Z up there was very little scar tissue.  This was great news as this was his third surgery and we still have another big one in a year to reattach his intestines.  He explained that Zachary’s stoma was being encircled by his bowels and those bowels were intermittently constricting the flow of his intestinal contents.  He said this is called an internal hernia.

The surgery team took the bowel loops out to inspect them and then “took down” Zack’s ostomy.  This involved disconnecting his stoma, cutting about 1 1/2 ” of small intestines off, and sewing up the ostomy site.  They then decided to make another ostomy site back on Zack’s right side.  They placed it just beside and a smidge below his mucus fistula so that they could save that as well.  If you’ll remember waaaaay back to June, his original loop ostomy was very similar to this.  A good thing about this setup is that his mucus fistula will now be contained in his ostomy bag again.  This makes our maintenance time much easier at home and at school and every other place we go.  Zack’s mucus fistula is incredible itchy on his skin and he was forever scratching at it and pulling off his bandages.  This will no longer be an issue.  Yay!

We met Zack just as he was being moved into the PICU.  He had a lot of tubes in a lot of places, but we expected that.  Here is a picture:

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The black thing in the upper left corner is the bag containing his epidural meds.  His epidural wire is yellow and taped down his back.  He also has a catheter for urine, and another IV in his left ankle.  When we first saw him he was also hooked up to an oxygen mask, but that was disconnected pretty quickly.  I don’t know if you can tell in this photo, but he is pretty pale.

The rest of Zack’s day was spent waking up from anesthesia.  His pain was well controlled, happily.  One of the reasons we decided to use both general anesthesia and an epidural is because of the amount of pain Zack was under in June.  He had to stay in the PICU so long because of his pain.  We are glad we decided to try this combination as it worked really well yesterday.  Just look at this face:

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So, maybe he doesn’t look happy, but he is asleep and we will take that!  He continued to do pretty well through the night.  He woke up once an hour or so asking for pain medicine and was given Tylenol.  His surgeon was in this morning at 7:15 and I mentioned his pale complexion.  He wasn’t worried as Z wasn’t in much pain.

At 4:00 this morning, Zack’s epidural bag started beeping every few minutes.  The PICU team said it was because the bag was getting close to needing to be changed.  Around 7:30 the team changed out the epidural bag.  At 8:00 (ish), Zack started complaining of pain and was soon crying out in pain.  His nurse and I thought it was strange timing as they had just changed the epidural bag, so we gingerly turned him as he screamed and saw that his back was wet.  His nurse paged anesthesia.  The PICU doctor ordered morphine.  The morphine did nothing.  He was given another dose of morphine and started to calm down.  We were still waiting for anesthesia.  The PICU team decided to add some Toradol as well.  Zack began to calm down, but was still in pain.

When anesthesia arrived and looked at his epidural, they decided that it was not leaking.  Their assessment was that Zack’s original bolus from surgery yesterday was wearing off and that he needed a higher dose today.  They upped the setting on his epidural and said they would be back to check him tomorrow.  I’m still not convinced that all is well with that epidural, but I’m not a doctor and time will tell.

Zack started calming down.  He still did not want to be touched or wear clothes or to have anyone touch his bed.  He was still crabby.  He kept telling his nurses not to mess with him.  He told the doctors that he did not feel like speaking and to please leave him alone and to stop bothering him.  If you know Zack at all, you will know that this is not like our boy.  He also told everyone that he wanted to go back to 3 West – the pediatric ward.  He said he wanted to go back where he didn’t hurt.  So sad.

The PICU, the surgeon and the ward staff all decided his pain could be managed on the ward and we were on our way back.  Before we left the PICU though, we managed to convince Zack that he had to at least wear his gown.  Whew.

Once back on the ward, Zack’s pain was still pretty high.  He received another dose of Toradol.  The nurses explained that it is like ibuprofen on steroids.  He also receives Tylenol and can get morphine as needed in addition to his continuous epidural.  He was still grumpy, but after a little nap he began to feel a little better.  His respirations were still high, as was his heart rate, but when I left tonight he was playing Wii with his daddy.

It’s Jim’s night to hang with Zack.  I’m hoping they both sleep well and that the pain is better tomorrow.  Zachary’s ostomy seems to be working really well.  I’m still a bit concerned about his coloring.  The doctor ordered more blood work tonight as well in the morning to monitor electrolytes and other things.  We will see what those show tomorrow.

Zack has still not gotten out of bed.  Today was too crazy with pain.  Hopefully the nurses can help us figure out how to get him out of bed tomorrow.  Remember, he has an IV pole, an epidural, an IV in his ankle with an IV board attached to it as well as a catheter and bag.  I’m sure it can be done, but it was too much for us to figure out today given his pain.

Big picture though, things are looking pretty good.  The surgeons were able to find the reason for his obstructions and fix it.  His ostomy is working properly.  This is better news than we have had in over 5 weeks.  We are hopeful that Zack will improve each day and that we will be home soon.  I’m still a bit hesitant to believe that given our track record, but I’m still hopeful.

Thank you all for your prayers and well wishes!  I’ll try and update as I can.  Our new laptop is not connecting with the Walter Reed wireless for some reason, so I have to wait to post until I’m home.  As I’m sure you can imagine, I’m pretty tired.  I promise to try and update regularly, but hope you’ll understand if there is a delay from time to time.   Until then, give your kids lots of hugs and enjoy having them home and healthy!

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Here we go…

Zachary is scheduled to have surgery on Friday, time to be determined. How is that for an opening sentence? It’s all I’ve got.

After meeting with both Zack’s surgeon and GI doctor today it is clear that he needs surgery sooner rather than later. His x-ray’s today showed no improvement from discharge even after a strict liquids only diet. In fact, his surgeon’s head resident said they even looked a little worse. His stomach continues to go in cycles of not too bad to distended enough that Zack wants to be drained.

Zack will be admitted on Thursday evening with surgery at some point on Friday depending on OR availability. Z’s surgeon explained that he will open Zack up along the main incision from last time that begins above his navel, around his navel and down a few inches from there. It could be bigger, but won’t be smaller than the original incision. There are a lot of unknowns about this surgery. Here are some scenarios:

1. They go in, find an adhesion, remove it and are done.

2. They go in, see something wrong with the ostomy and have to move it.

3. He may come out without a mucus fistula or with a new ostomy in a new place altogether. Remember, his mucus fistula is on his right side where the original loop ileostomy was before the revision in June. Now it just leads to the large intestine and secrets mucus, but acts as an access point for testing and “stuff”.

4. They could have to resect more bowel.

5. If they need to move the ostomy, it will probably end up back on the right side which is closer to the place the small intestine would be inside if nothing had been messed with at all.

As you can see, nobody can really say what will happen on Friday. Zack will spend one night in the PICU (if all goes well). In June, Zachary had lots of pain that was hard to control. He ended up staying in the PICU for 5 1/2 days mainly because of his pain. This time he will be given an epidural while in surgery to help with the pain. He will need to be in the PICU as long as the epidural is in place. The surgeon said to expect him to be in the hospital for a week.

Happily, we have just completed enrolling Zack in our county’s Home and Hospital Teaching Program. This program allows students who are unable to attend school due to illness to continue to receive instruction either at home or at the hospital. We were a little concerned about the logistics because we live in a different county than our hospital. However, our hospital social worker can facilitate all the craziness for us and in the end a teacher from the hospital’s county will come to the hospital to work with Zack and our county will be billed. Tomorrow Zack will meet the teacher who will come to our home to work with him before he returns to school as well as if he is sick again – praying this will not be the case! I know he will miss all his friends at school, but I am thrilled that he will actually get some instruction during his hospital stay.

Other exciting news of the day….our Pastor and his sweet wife brought the most delicious dinner over tonight. Oh my, was it ever scrumptious! Our neighbors brought us a homemade apple pie made with apples they picked themselves. We can’t wait to put Zack to bed, break out the ice-cream and eat that puppy. Yummm-o.

Zack and I also had an unscheduled Toys “R” Us visit today. I don’t usually spend a lot of money on toys for my children. They have plenty and there really isn’t anything they need. I’d rather spend money on experiences and other fun things. Today was a special day. I felt bad for my boy, it’s been a long few months, and wanted to spoil him a bit. We got some Rescue Bots and a Rescue Bot costume for Halloween. The toys are for the hospital, but it was exciting watching him carefully decide which toys he wanted.

So there you have it. Zack will go to school tomorrow and Thursday. We will check-in to the hospital after dinner and get his IV started. Zack’s biggest concerns are when he can eat real food again AND whether or not he will have to have another NG tube. He’s been a trooper and I can’t wait until this is all over.

We appreciate your prayers. We would ask for prayers for Zack’s surgeon(s) on Friday. That they would be able to clearly see what the problem is and be able to correct it. Prayers for Zack’s body to handle the surgery well. Prayers for Jake as he begins another week of being parentless. Finally, prayers for Jim and me that we would have the strength and energy to make it through the week.

I’ll leave you with this song by Mandisa. I’ve been hearing it all summer and it makes me think of many people. However, right now it is a good reminder to me that God’s is in control and bigger than even this. Enjoy!

Almost Out Of Here!

We are close.  So close.  Looks like Zack will be released on Saturday!  The doctors are being extra careful before sending him home and I appreciate that.  During rounds in the PICU, the staff started by saying this is hospital day _______ PICU day ________.  Well, today is hospital day 26 for us.  When we go home on Saturday, Zack will have been here for 4 weeks.  That’s a long time!

This is Zack on the way to the hospital on June 2, 2013

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Here is a picture of Zack today.

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For the past few days, the doctors have been working to get Zack off of IV pain medicines and onto oral doses.  He is now down to just Tylenol and Motrin with one narcotic as needed.  We try not to give that unless absolutely necessary.  

The doctors are also weaning him off of TPN (IV nutrition) and hoping he begins to eat more.  He isn’t very hungry, mostly due to the IV nutrition he receives and also because he hasn’t eaten in so long.  Yesterday he had his first taste of “real food” when he had a pancake for breakfast.  Today for lunch he had a few bites of a turkey sandwich. Slow and steady…we will go home on PediaSure to supplement as needed.

Otherwise, Zack is doing great.  His energy is returning.  He can climb into and out of the bed on his own again.  He likes going to the playroom to play xbox with Jim.  Today Zack made crafts with the Social Worker and had a great time playing with sand.

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Yesterday our church came and did a mini-VBS with Zack.  He was so excited.  He had been learning all the songs before his surgery because he wanted to sing and dance on stage.  He was sad he was going to miss VBS, so our wonderful Children’s Director came with some other wonderful people (including big brother) and sang songs, brought crafts and talked about a Bible story.  I think they blessed more than Zack as the fun could be heard through our door.

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Again, I apologize for the blurry pictures.  My iphone camera stinks.  I wanted to use this picture because you can see the joy and happiness on Zack’s face.

One more day and then we head home.  I am still in shock.  It feels similar to going home after our first child was born.  We were so excited for him to be born and for him to come home, but then reality hit.  Luckily for us, we are well prepared this time!  We have had lots of training here at the hospital, we will have a home health nurse check in on us once a week for the first month and we will be visiting the doctor frequently.  Zack will come home with his PICC Line for a few days so that when we go back next week they can draw blood and make sure all is well at home before removing it.  Even so, I’m sure we will be a little cautious the first few days while we settle in….I am just so excited that we are almost there!

Dawn

Cautiously Optimistic

What a difference 36 hours can make.  Here is a picture of Z’s face yesterday:

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Do you see any spunk or joy in that face?  Do you see any color in that face?  Nope. Me either.  Yesterday was easily one of the hardest days yet.  Each day in the PICU brought a new challenge, but we were getting better.  Each day they told us we would be going back to the ward the next day.  Friday was a rough day with pain management.  I thought it seemed like Z’s tummy was distending a bit, but I tend to lean toward doom and gloom.  I figured I was imagining things.  Friday night was not fun.  He was asking for more pain meds almost as soon as he got a new dose.  By Saturday morning, everyone saw the distention.  Nobody liked the distention.  X-rays were taken.  Distention was seen.  Predictions were made.

The doctors felt that Z might have another ileus or another obstruction or an infection or the beginnings of an abscess.  He was taken back off liquids.  There was talk of reinserting the dreaded NG tube.  His surgeon, who was in Colorado, called to talk to us as well.  To say we were discouraged would be an understatement, but I can’t think of any other descriptive words that would fit better.  Our “replacement” surgeon said that they were taking things very seriously and that they would get a handle on things.  In the meantime, we were to walk Z as often as we could.

You may think going for a walk would be easy.  You would be wrong.  Zack’s stomach was in a lot of pain.  The first walk involved lots of crying and pain and he made it 5 steps out and then Jim carried him around the PICU ward, 5 more steps back to bed and then needed more pain meds.  The doctors decided it was time to go on a low and continuous dose of Dilaudid with a PCA button (Patient-controlled analgesia).  Jim kept telling Zack that the more he walked, the sooner he could come home.  We kept telling him how brave he was and how strong he was and how proud we were.  It seemed as though he was beginning to feel better by the end of the day.  Another x-ray confirmed the distention was subsiding.  It also showed a matchbox car…it seems his bed was not completely cleared before the x-ray was taken.  I’d love to have a copy of that!

It was a long day and Zack fell asleep at 7:00.  It was Jim’s turn to spend the night and he thought it was going to be great.  Sadly, Z woke up every two hours overnight but woke bright and chipper.  All of the testing the doctors did the previous day came back negative.  Zack’s fever was gone.  He was able to walk all the way to the nurses station (12 steps?) and back to his bed without complaint. The combination of continuous Dilaudid, subsiding distention and prayer made all the difference.  In addition, Zack’s morning labs showed a decrease in white blood cells and stabilizing numbers in other areas.  After a call to the ward to see if they could handle Z’s extra meds and challenges, the decision was made to release him back to the ward!  Yipee!  After 5 1/2 days in the PICU we are back to the regular pediatric ward!

Did I mention how much we love our nurses here?  They made such a fuss over Zack’s return.

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He was so excited to be back.  He has been a chatty little boy and much more like himself.  The difference is incredible!  We’ve been walking in the ward, playing in the playroom a bit and writing thank you notes.

Getting ready to walk in my new Superman cape my brother Jake gave me.  I am pretty strong and brave.

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Check me out!

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When I get tired, my ride is right there to take me back to my room.

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Another exciting development tonight…we got rid of Zack’s second IV port in his left hand.  Slowly shedding equipment and medicines.  It’s pretty awesome.

Now that we are back on the ward, we still have a ways to go.  The doctors have all said that in order to go home Zack has to be able to walk, eat, drink and take medicine orally.  We are well on our way to walking.  Still not allowed to eat or drink.  Tomorrow we will be able to introduce very limited liquids.  Since we had such a problem with distention after introducing small amounts of gatorade, we will be going extremely slow this time.  We don’t know what that will look like, but it will take a couple of days before we are eating anything.  Then, or maybe at the same time, we have to wean off Dilaudid and get onto oral pain meds.

Jim and I are hesitant to guess when we will be coming home.  It seems like we get our hopes up and then have a set back.  However, today was a good day.  Zack smiled.  Zack walked.  Zack played.  We will count our blessings and give thanks for that!  Thank you for your prayers and well wishes.

Dawn

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!

Dawn

What On Earth Happened? — Surgery #2

You may be asking yourself, “What happened to Zack?”  I thought he was doing so well.  He was doing well.  He had more color, he had spunk, he was smiling, but it was all because he had a tube in his intestines diverting fluid from his obstruction.  His happiness was dependent on the tube.  And then it fell out.

How does a tube fall out of your body?  Well, Zack’s tube was sutured to the wafer of his ostomy bag and then secured with steri-strips.  It was quite the invention and it worked really well for 48 hours.  Eventually, the steri-strips just couldn’t hold the tube and it literally fell out of his abdomen while he sat playing a game on the computer.  His surgeon decided to see what would happen if we just left it out.  As we feared, Zack’s intestines did not drain.   He began to need to be drained again and he began to be uncomfortable again.

On Monday, Zack’s surgeon began saying that our plan was changing.  No longer was there talk of us going home. On Monday night at 10:30 p.m. as he was draining Zack’s stoma,  he said Z would have another surgery within the week to fix the problem.  Tuesday morning rounds came and he told me that Z had been added to his schedule and would be having surgery in a few hours.  My head started spinning.  That wasn’t next week!  He felt that Z’s intestines were no longer tolerating the draining well.  He did not feel comfortable sending us home to drain them when they were so irritated as there was a chance we could puncture his bowel. Most importantly, Z’s condition without the tube was not going to get better.

The procedure was explained.  I signed consent forms, called Jim and our family and then sat down and tried to make sense of what I had just heard.  The surgeon said that having surgery 2 weeks out from your original surgery is really bad timing, but that it could not be helped.  He wanted to do a laparoscopic procedure, but felt it would end up being an open abdominal procedure.  He told me that he would open Zack, see if he could isolate the kink and fix it without cutting his intestines.  He also told me that this was probably not possible.  He also needed to redo Zack’s ostomy and he would probably now have two separate stomas instead of one stoma.  We met with anesthesia and off we went.

Let me tell you, waiting for your child to come out of surgery is torture.  How are they doing?   Is everything going according to plan?  So many questions. Time feels as though it has slowed down and almost stopped. It was supposed to be a 3 hour procedure.  At 4 1/2 hours the doctor finally came to get us.

The surgery was an open abdomen surgery.  15 cm of Zack’s bowels were taken out because they were just too dilated to save.  The new end was attached to a new stoma on the left side of Z’s abdomen.  This new stoma is the ileostomy.  The “old” stoma was fixed so that there is now only one hole that leads to the large intestines.  The large intestines are now completely cut off from the small intestines.  The surgery scar is right down the center of his abdomen around his belly button and a little bit down.  It was a pretty involved surgery.  When the surgeon came to get us, he told us that Zack was going to be spending the night in the Pediatric ICU because he needed a blood transfusion.  He had lost the normal amount of blood for the procedure, but his hematocrit was low to begin with and he was pretty pale.  Turns out he hasn’t needed that yet…..

Once in the PICU we realized that Zack was in a LOT of pain.  Pain medicines were started.  He got Dilaudid, Ketamine, Tylenol, Zofran, more Dilaudid, and Fentanyl.  The boy was drugged and nothing was touching his pain.  Our night was miserable.  Seriously.  He did sleep for an hour between 2-3, but the rest of the time was in major pain.  I did not like that.

The pain continued this morning and the pain management team suggested doing an epidural.  Jim and I signed the consent forms, but when anesthesia came in and said we would have to do it under general because the “stuff” draining from his NG tube put him at risk for aspirating, we reconsidered. We consulted with the team from anesthesia, the PICU doctors and our surgeon.  In the end, we decided that we just couldn’t put Z under general again.  His body doesn’t react to things in a typical way, our hospital stay has not been typical and we didn’t want to subject him to the risks of another procedure so soon.

The new plan was/is for pain control using Toradol, Ketamine, Zofran, Dilaudid, Tylenol, and Fentanyl as well as battelfield acupuncture.  I had never heard of using acupuncture in the hospital before, but it was offered as an option and it sounded like a great idea as the other options were not working well.  I found this article for those of you who want to know a little more:

http://www.naturalnews.com/035544_battlefield_acupuncture_painkillers_soldiers.html

Here are two acupuncture photos for you:

Sorry this one is blurry.  You can see the one in his forehead and some on his ears.  He slept through the whole thing.

Shortly after making our decision, Zachary fell asleep.  We don’t know if the drug dosage was finally large enough or if he was just totally exhausted, but he slept for 3 hours!  We were thrilled because he needed a reprieve from the pain.  During that time a glorious thing happened…..his ostomy started to work!  I did a little happy dance and we texted our GI, took pictures of the output for him (no worries, they will NOT be on the blog), and told the nurses – they clapped.  It’s a big deal.  It works and is a huge step toward going home.

Zachary is still in the Pediatric ICU tonight.  He has tubes and wires and drains everywhere.  Here is a picture of his IV pole tonight:

It’s a double-decker rack.  As crazy as this seems to me, the nurses have told us that some people have two racks filled with medicine.  I hope I never have to see that!  In addition to all the pain meds, Zachary has an antibiotic called Zosyn, TPN with Lipids, and fluids hanging.  I get a headache trying to figure it all out.  I’m glad it isn’t my job!  To get all of that into his body, the nurses added another IV with two “ports” to his right hand.  Here’s a photo of that:Th

As you can tell, he’s been through a lot these past 17 days.  We are beginning to see signs that things are headed in the right direction.  Our surgeon has cautioned us that Zack’s body doesn’t work like one might expect, so we can’t say for sure when we can come home.  We have one more night in the PICU, at least.  The drugs he is on now can not be taken to the regular ward, so his pain will have to be controlled by other drugs first.

Once back on the ward, we have to start disconnecting tubes and introducing fluids again before he can eat.  In addition, Zachary’s white blood cell count has elevated.  It could just be from the stress of the surgery or it could indicate a beginning infection. Since he had a bowel reconstruction, it is considered a “dirty” surgery and at more of a risk for infection.  He’s already on a big antibiotic in hopes of squashing this, but will be monitored closely for the first 5 days after surgery.

There you have it.  I’ve typed as much as I can.  My eyes are stinging.  Jim and I would like to thank you all for your prayers, meals, gifts, calls, texts, visits, etc.  Please continue to pray for Zack as he works to get better.  We can’t wait to go home.

For now, I’ll leave you with a few fun photos of the days before this surgery:

Zack and Laura Lee the Golden Retriever therapy dog.  She looks a bit like our dog, Rugby, and was very patient as Zack patted her head over and over.  I’ll remember these dogs as one of my favorite things about being here.

Finally, a photo that makes me smile.  Zack’s teachers came to the hospital to visit and to bring him his graduation cap and certificate from preschool.  We’ve got a lot of healing to do because we’ve got a big year coming up! We can’t wait to see you all at home soon!

Dawn