30 November 2012


Bennett was finally discharged at 4:30pm this afternoon.  He was so very excited.

Of course, the very last (but painful) step of being discharged is having the IV taken out.

It's both scary and a bit painful to Bennett.  But he did very well.  Bennett currently has a lot of edema (swelling) in his belly, scrotum, legs and toes.  But the surgeon feels like it's just normal edema from the surgery and will go away with time (in fact, he's likely to pee it out).  The surgeon kept us at the hospital all day to make sure the bruising around his anus is healing fine.  Apparently, the sugar injection they used, called Dexa 50 or Dexatrose, put a lot of sugar to the bowel but the sugar spread out to other tissues (which was somewhat expected) so that he had bruising and ran the risk of an infection under the skin.  We will continue to monitor him but the surgeon believes his wound is going to get only better from here.

Upon arriving at home, Bennett found a gift waiting for him at the front door: a balloon bouquet with a bag of yummy candy.  Bennett was thrilled!  It was a gift from his preschool teachers and classmates. It was incredibly thoughtful to receive and wasn't just a gift for Bennett but a gift for all of us.  Getting to see Bennett get so excited over receiving a fun treat - after after watched Bennett have to suffer so much in the last few days - was a gift in itself.

In fact, tonight, after receiving the gift, Bennett said, "I like the happ-spittle!" (translation: "I like the hospital!")  I'm so glad he associated this gift with his time in the hospital.  Good feelings towards doctors and medical intervention is important for Bennett.  For Bennett, going to the hospital isn't a sprint but a marathon.  We are so thankful for the love we received from his little preschool class.  His teacher, Mrs. Missie, has been particularly involved in his care at school as well as keeping updated with how he is doing.

I have so many more things I'd like to write about thanking people for prayers and well the conversation Brian, Oliver and I had tonight about life not being fair...and like the adorable comment Bennett made to me on the way home from the hospital.

However, after 1.5 hours of sleep last night, my eyes simply will not stay open long enough for my fingers to type my thoughts.  So, I am off to sleep.  But I will share tomorrow a few lingering thoughts from our time at the hospital tomorrow.

Until then, I'm going to enjoy a good night's rest,

Day of Waiting

We have had a good day today.  Our morning was early but by 9AM, Bennett was interested in getting off his bed and walking around.  I remember last time that once he got down and walking around, he began to feel much better.  Today he has been his silly self.

He insisted that we play superheros this morning.

Poor baby looked so swollen and sick but he was in great spirits.

We decided to walk outside of our room.  Bennett did a great job walking while connected to an IV pole. (It turns out that Bennett wasn't supposed to be out of his room without a mask and shouldn't have been allowed to touch anything...but we didn't realize the full rules about medically contact procedures until later in the day.  See below...)

It's amazing how "baby-ish" he looks in this picture.  I'm so glad there is still baby in him.  I'm not ready for him to grow up.

While we were "out," we noticed the play room.  It was closed but I promise Bennett we would come back to see it.

When we were peeking through the window, I noticed Bennett's sign (made by Child Life) on the table.  This is one of my favorite things Scott and White Children's Hospital does.  We have had one during almost each admission (including here and here).

Our silly Bennett obviously feeling better!

I took Bennett in so I could get a cup of ice for the cans of diet cokes I brought with me to the hospital. Bennett said he wanted one...until I realized he didn't want a big glass like me, he wanted "the little one."

So, I grabbed myself a cup or two and grabbed a "little cup" (aka a coffee creamer) for Bennett.

He loved using a tiny cup, although I poured out the cream.

While trying to take a picture of our cups, Bennett hit his against mine.  I said, "Cheers!"  He said, "no, Cheese!"  So, we "cheesed" our cups together - in honor of Bennett getting better.

This morning, we did Vest and nebs as usual.  Sometimes, I find Bennett does best if we do the Vest and Nebs separately.

I loved seeing this hidden smile this morning.  He is still on Loratab and had had some morphine but with pain management, he seems to be doing great!

Another shot of Bennett being silly.

Oliver and Daddy showed up for lunch today.  As usual, Oliver was very tender.  Shortly after this moment, Oliver, who has been very concerned that Bennett is going to die, came up to me and said, "Mom, Bennett just punched *really* hard.  But that's ok.  It's just that my brain tells me this means he is getting better."  Touche, my son, touche.

Early this afternoon, Bennett apparently found himself a comfy spot to take a nap.  Unfortunately, I'm still being fueled by adrenaline, otherwise I'd crawl up right with him.

The nurses originally put an IV in Bennett's arm without an "arm board" (the board that Bennett's right wrist is wrapped around keep him from pulling out the IV in his arm.)  I asked several times to see if the nurses were going to give him an arm board when I noticed he hadn't been given one after surgery.  The nurses sorta blew off my request.  So, I finally had to stop and make it very clear that I wanted him to have one.  Once he got one, I noticed his interest in taking out the IV and his preoccupation with being upset he didn't have use of his arm lessened significantly.  I think "arm boards" are wonderful for toddlers because they so easily forget why they can't use their hand.  From now on, I'll insist on one earlier in our stay.

One of the most precious gifts I have received came a few days ago, I placed on Bennett's wall as soon as we were admitted.

Bennett's teachers from Bennett's school made a beautiful sign of all of Bennett's classmates' fingerprints for Bennett to put in his hospital room to cheer him up.  I placed it under the TV so he could see it best.  Bennett has asked about it several times since we've been here.  He loves it.  We've talked about his friends, about which color of paint his friends' used and how they can't wait to see him at school next week.

I actually cried when his teacher, Mrs. Missie, gave it to me.  I was both so touched that she would make such a thoughtful gift for him.  And I was so sad that his little class of 2 and 3 year olds were even having to make a sign for his hospital room.  But I am so glad they did.  Not only did it cheer up the room, it reminded him of them...

...and of his self. Mrs. Missie said Bennett saw is friends doing their handprint and wanted to do his handprint too.  I love it even more for that reason. :)

Tiny fingers remind Bennett he is loved.

One thing I haven't really mentioned is how we have been on "medically protected contact orders" during our hospital stay.  I have to say this is literally one of the most depressing parts of having Cystic Fibrosis.  It's makes one feel like a leper...and what's the worst is that nothing you do will ever allow you to have freedom inside the hospital ever again.  Usually hospitals require contact precautions when a child or person has a contagious infection.  But, for Scott and White Children's, it's no matter what if you have CF.

What does it mean to be on "medically contact precautions"?  Bennett is confined to his room for the entire of his stay.  No one in our family, but especially Bennett, can come into the floor playroom (you know, the room they created specifically so children would have a place to go play and forget they are sick?).  And every person who comes in our room must wear full protection: a gown, gloves and a mask.  It's scary for Bennett and it's isolating for our family (then again, I guess we are considered in "isolation.")

I know it's for the best - for the other patients and for us.  It's absolutely for the benefit of Bennett.  We don't want sick germs from other medically compromised children.  They don't want ours.  But how do you deal with being "on isolation" or being on "contact precautions" during entire hospital stays for one's entire life?  I suppose, you just get used to it.  I am trying to have a good attitude about it...but it often feels the rules are forced and arbitrary.  And more than anything, it just reminds you you're a part of a subset even while being in a subset. (Having set that, there are some rules that allow us to get out of the room or play with the play room toys.  Bennett can get out, if he wears a surgical mask the entire time...and we can borrow toys from the play room but only because they can be individually cleaned afterwards.)

In other news...
We saw the ENT doc today.  I mentioned to her I wish I had asked her to do a culture of the bacteria in Bennett's lungs while she was doing a bronchoscopy yesterday.  Although we get a throat culture each CF appointment, the throat doesn't always tell us what is lurking deep in the lungs.  Often, the best way to know what bacteria may be growing is through a bronchoscopy.  However, the doc said, "oh, I would have if I had seen puss or lots of mucus.  But the lungs were clear.  I didn't see anything."  Surprised, I asked, "did they look normal?"  The ENT answered, "yep!"  I was thrilled to hear this.

We are now waiting to hear the final word from the doctor - is she going to let us go home or keep us another night?  She has been wanting to see how Bennett's rectum has healed.  He seems to be tolerating his pain with just an oral dose of Loratab.  He also seems to be eating and playing normally.  There is a lot of swelling in his scrotum, legs and feet but the medical resident seemed to think this was fairly normal and he would pee it out.

So, the boys are playing in the room.  I am beginning to pack up and we are all thinking that we should be at home tonight as a family.  But, in the hospital, you're never free.  You can't go anywhere until the doc discharges you.  So, we spend our day waiting for a signature on a form...

Sleepless in Temple

Staying in the hospital is a bit like being in a casino.  There is no concept of time.  I suppose Bennett decided he slept enough during the surgery that he had no desire to sleep last night.  I tried to get Bennett to go to sleep around 10pm.  Since he was in bed all day and people were still coming in and out, my only option for indicating it was "night-night" time was to tell him we couldn't watch any more movies.  He finally settled and fell asleep, as long as I slept beside him.

What an night.  I couldn't move hardly at all since he was beside me and I was so afraid of pulling on IV and pulse oximeter cords that attach to him.  On top of that, this bed is very snug.  So, at different times my legs hurt.  But my biggest difficulty falling asleep was allowing myself to.  Part of me was still  reeling from adreneline from earlier in the day (the body's way of coping with crisis management).  The other part of me kept anticipating someone else walking into our room.  They never tell us when they are going to come in.

But finally, around 1:30AM, I began to feel myself relax and I became sleepy.  It was around 3AM that the nurse came in to check vitals and to check Bennett's bottom, which involved taking his diaper off.  Needless to say, it woke both of us up.

Bennett never seemed to get comfortable after that.  Eventually, around 4:30AM, I asked for pain medication since he kept complaining his bottom hurt.  So, the nurse gave him some IV morphine.  Once he started feeling better, I put on a 20 minute cartoon on Netflix on the iPad (thank goodness for Netflix!  The hospital movie selection offers no Spiderman or Super Hero Squad.)  Bennett seemed preoccupied with a cartoon for a short bit so I began to drift off again.

However, the 20 minutes was up within a flash and I was back up again changing cartoons.  Just as I began to feel myself drift off again (around 7AM), our first medical resident (ENT) came to see us.  At that point, I couldn't fall asleep again.  Thirty minutes later, a half dozen surgery residents were in our room gathered around Bennett's bed to observe how his bottom was doing.

I actually like the medical resident working our case.  She seems so normal (sometimes, residents can be nerdy and socially awkward).  But this girl is good.  She came in quickly, listened to my warning to her that she should ask me any questions first (before she examines Bennett) if she wants to hear any of my answers.  Then, she went on to examine him.

She said he does have a lot of swelling on his bum due to the injection they did yesterday.  She said that we should probably wait to go home until he is feeling better.  Obviously, we can't go home on IV morphine so Bennett needs to demonstrate he can eat, drink and manage his pain with an oral pain med before we will be able to go home.  We may also demonstrate he can poop before we go.  I'm not sure yet if that's a prerequisite.

The bottom line, though, is Bennett needs to demonstrate he's fairly back to normal before they want us to leave.  Of course, nobody wants to see him have to come back to the hospital after returning home.  So, we will wait and see how Bennett does today.

Since I have had really only 1.5 hours of sleep today, I am looking very forward to Brian coming to relieve me for a short while.  I had considered maybe returning home to sleep but I'm not sure I will be able to drive back home without falling asleep first.  So, I may have to let Brian care for the boys in the room while I sleep on the couch.

I am really hopeful we will go home today.  But I am also realistic that it may be a long day until that happens.  The nurse has reassured me that they discharge at any time of the day.  So, I'm trying to be patient and know we are in good hands for now.

The good thing is, other than some pain, Bennett is doing very well.  And other than wishing I had caught a few more Z's, so am I.  We look forward to having little Oliver later this morning to bring some comic relief.  It always helps little brother feel better when big brother is around.

Finishing out our day.

It's 11:20pm and Bennett has finally fallen asleep for the night...well, for another 3 hours before the nurses come take his vitals...and until 5:30AM when the doctors come to check on him and then the medical residents come to see for themselves at 6:30AM.  But, at least he will sleep for a bit.  I will cat nap tonight too.  But I look most forward to going home to take a nap tomorrow.  (I am hopeful we will be discharged sometime tomorrow.)  But, first, I want to document our day as I know tomorrow brings with it its own adventures.

Our friend Dana came to be with Brian and me during Bennett's surgery.  It was a nice distraction for us.  Dana is the kind of person who doesn't take herself or life too seriously.  So, we had lots of laughter going on, which lightened the mood.   It was most helpful when Dana went to grab us lunch.  Let's just say the cafeteria left us with much to be desired. 

I actually sat with Dana during a significant surgery in her life, the day her husband had brain surgery to remove a cancerous tumor.  It's nice to be able to share in each other's experiences, even if they are hard experiences we would rather not endure.

Bennett's surgery lasted about four hours.  Then, he was taken to a Post-Operative room where we could see him.   He stayed in the Post-Op room for about an hour, given him time to wake up.

They mainly monitored his pain and made sure he was getting a little extra oxygen.  They also took his blood sugar and found it was 362, much higher than the 70-130 it should have been.  This was due to the injection of a sugar substance they used during his rectal procedure.  He was given extra IV fluids to flush his system and help his body absorb the extra sugar.

After he began to arouse in the Post-Op room and was keeping down some liquids, they decided to take him to his hospital room on the 4th floor.

 I am so thankful that we were admitted.  It would have been terribly difficult to monitor him and keep him still and peaceful at home.

One of the things I love about his coming back from surgery was that even though the surgical team had taken off his clothes.  They had put back on (or left on) his new Spider-Man slippers for recovery.  He hasn't taken them off since.  He may be naked under those covers but he's got himself some warm superhero shoes underneath.

His favorite dog has also stayed near him today.

Bennett slept on and off all afternoon.

Oliver went to school today during the surgery.  We felt it was best to let his day be as normal as possible.  But after school, he went home with his friend Justin to give Brian time to stay at the hospital until Bennett was out of surgery.  Brian went to Waco to pick up Oliver, a few things from home and Chick-fil-a before returning to the hospital for us to spend a few hours as a family.   Bennett preferred to lie on Daddy's chest for a good bit.

Of course, even the best moments of peacefulness are often interrupted by the need to take vital signs or do blood work.

Oliver indicated for the first time tonight that he'd like to be a doctor some day.  When I asked him why, he said, "because I want to take care of my friends."  He seemed very interested in learning how all of the machines, lights and beeps work.  He also had a hard time distinguishing the nurses and therapists from the doctors so he announced to everybody that he was five, he was sick and had allergies.  I think he was trying to find a doctor who could take care of him too.  The sweet staff were very patient to talk with him even though none of them were doctors.

While Bennett was on Brian's chest, the respiratory therapist (RT) came in to do his breathing treatment.  Since we do this twice a day, we told the RT we would handle it.  Bennett didn't put up much of a fight.

 I appreciated Brian coming to the hospital.  It gave me a chance to take a break, walk around and be with Oliver.  I need that break in order to have the strength to be the only caregiver for a while in the hospital.  It doesn't seem hard but you're the only one who can console your child and with people coming in hourly, it takes a lot of consoling.  I have learned through our hospitalizations that taking breaks is necessary and healthy.  Bennett insisted that Brian lie with him in the bed.  It's about as comfortable as it looks.

More blood work needed.  The first one clotted.

In honor of our last December surgery, I made sure to pack Christmas lights to make our own IV pole Christmas Tree again this year.  I kinda like it with colored lights opposed to the white lights we used last year.

Bennett seemed to like them too.

Brian and Oliver had to leave around 8:30pm since Oliver needed to get his own rest at home.  It was hard for him to leave.  He later called hysterical.  We decided we are going to let him skip school tomorrow to come be with us and Bennett.  We have a hunch he is genuinely afraid Bennett is going to die.

But shortly after Oliver and Daddy left, Bennett made a mention of calling family.  So, we tried calling a few family members.  This was the first time I saw Bennett break out a smile.

 Our room.

Sweet boy chats it up as best as he can.  He made sure to explain he currently had swollen testicles (a normal side effect of surgery done on the lower part of the body).  It was pretty funny to hear him share that he had recently realized, during a routine diaper change, his testicles were not right.  He said, "too big!!!"  I laughed and said, "yes, you're right."  Glad to know he knows what size they should be.  Mark that off the list of what to teach a boy.

We later had to do Bennett's vest.  I didn't know if he would handle the shaking but he did.  It was important for us to do that, too.  Four hours in surgery meant he didn't get any of the airway clearance that he would get with playing and sitting up.  Airway clearance is super important in those with CF as, otherwise, the mucus has time to build up, potentially making him sick.

Bennett insisted that I lie next to him during his Vest treatment.  We watched an episode of Super Hero Squad together.  I loved most hearing him sing with the intro song.  Just a little bit of normal Bennett was good to see!

This is my bed for the night.  But, no surprise, it's empty.

This little guy screamed until I relented and said I would sleep next to him in his crib-bed.  I can't blame him.  He knows I will protect him - his first line of defense against these people who has made very clear he doesn't care for.  He told our night nurse: "I don't like you!"  Thankfully, she didn't take it personally.

But even if this little guy hadn't screamed for me to sleep next to him, I would have.  There is something sweet and beautiful about the opportunity to snuggle next to my sweet tiny super-hero under the glow of our IV Pole Christmas Tree.  It doesn't just make him feel safe, it makes me feel a little bit safer, too.