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Archive for January 2011

Bennett can't ever have an Appendicitis....

Monday, January 31, 2011

This is what a normal person's intestines look like and what Bennett's intestine's looked like before his right-after-birth surgery:

Image found at: http://www.cedars-sinai.edu/Patients/Programs-and-Services/Colorectal-Cancer-Center/Services-and-Treatments/Right-Hemicolectomy.aspx

This is what Bennett's intestines look like now, after surgery:
Image found at: http://www.cedars-sinai.edu/Patients/Programs-and-Services/Colorectal-Cancer-Center/Services-and-Treatments/Right-Hemicolectomy.aspx

How did I miss this?!  Last week, while talking with the Pediatric Surgeon, I learned for the first time that Bennett doesn't have an Appendix.  (The appendix is connected to the large part of the bowel on the bottom left of the right ascending colon.)

Apparently, the type of surgery Bennett underwent right after birth (called a Right Hemicolectomy, which was due to a Meconium Ileus intestinal perforation) required that Bennett's appendix be removed (along with part of his intestines). 

Of course, this isn't a big deal since the Appendix doesn't have any real purpose in our bodies.  But, I just thought it was pretty funny that of all the health problems Bennett is at a greater risk for, the one thing he isn't at risk for is an appendicitis!  Sweet!

Oliver Hooks Up The Vest

Sunday, January 30, 2011

Last evening, after our morning events at the ER, Oliver wanted to help Bennett "do his vest." So, for about five minutes, Oliver sat over at the Vest by himself getting it ready (aka pushing random buttons and putting the hoses in any spot he could find).

The video shows an unwilling participant in the video so you don't actually see Bennett sit down for his vest.  But sweet Oliver was so very proud of himself!  He never really knew he hadn't gotten the hoses quite right.



Weakness

It's 3:37am.  A freakish probably-brain-damaged meerkat squirrel just woke me up from the middle of my sleep.

I just had this dream that this meerkat squirrel was in my house and was going to hurt me.  I tried to find whatever I could to kill it.  But all I could find was this tiny wooden ruler.  I got a few good wacks to the back of his head and thought I had at least caused it some brain damage.  But it kept coming back like it was rabid.

Just as I thought the meerkat squirrel was dead, it popped out right from underneath me causing me to completely wake up from my sleep.

They say dreams are our body's way of working through the days events.  My dream is probably a good image of what life has been like for us for the last few days: Scary things popping up and our having little ability to do much about them.

We have felt a bit unprepared for emergency room visits and a 2-day admission to the hospital in addition to three out of the four of us having compromised health...(these colds are baaad!)

Last night, as Brian and I climbed into bed super early, I told Brian that I was waving a white flag of surrender.  "No more," I told him.  "I give up.  I surrender.  I'm down for the count."  Things went south on Tuesday.  I was coping on Wednesday but was struggling on Thursday.  I did better on Friday.  But by Saturday, I just felt completely defeated.

Before falling asleep, I turned over and asked Brian what he thought God wanted to teach us through this whole process - a process that has seemed to suck every bit of emotional and physical energy from us both.

It's nice to have a PhD Theology Student for a husband when I have questions about God.  Brian reminded me that God doesn't necessarily allow things to happen to us just to teach us something.  But he agreed there is always something to be learned from everything we experience in life.

We discussed the idea of suffering and what it means - how it reminds us how little control we have and how it causes us to hold onto God tighter...how suffering builds perseverance (Romans 5:3-4) and makes us hope for heaven.

Through this conversation, I began to recognize the one thing I am walking away from this experience with most is the awareness that I am not self-sufficient.  This week, we needed friends.  We needed family.  We needed compassion.  We needed encouragement.

Right now, this time in our lives, we just need more than we ever have before.  The brokenness of Bennett's body means we, as his parents, have to offer him more.  And that means that we have less to offer others, including ourselves.

As we have had less to give, we have needed to receive more.  And that can be hard to do.

We haven't been able to volunteer with our church's nursery at all this winter since, each week, we take turns caring for Bennett in a room away from snotty noses and junky coughs.  We haven't been able to offer up meals to friends who have been having babies because we ourselves have struggled to get meals on our own table nightly.  We haven't been able to reach out to potential friendships we'd love to see grow because our need has been to keep our marriage intact, Brian's schoolwork on course and our children on schedule.

We have not been able to give as much as we want to give.  And have needed to receive more than we have ever before.  And that feels like a loss of control sometimes.

But I am learning to appreciate the gifts without feeling guilty...to recognize that people want to help and feel good to know that they matter (which they do!).  I am learning how to say yes, when friends ask to come visit us at the hospital...or how to say yes, when neighbors offer a meal.  I am learning how to say yes when a parent wants to offer me a few hours of rest by caring for my oldest child away from home.  I am taking seriously the offers of places to stay or fulfillment of needs should we find ourselves in a similar place again.

I realize that our needs will not be forever (although with Bennett, it may be for a while).  I believe there will be a moment when we can give back, at least more than what I can now.

But I am choosing to take away from this week the acceptance that I am not self-sufficient.  As a Christian, I am broken and am in need.  I am helpless.

As an American, it's a hard concept with which to come to terms.  But I realize that when I accept what others offer, I ultimately accept what God offers me.

My hands have been made open in the last few days.  And I have fallen on my knees purely out of weakness.  I have wanted to give up numerous times.

But this is a good thing.  As I sing the words to 'Jesus Loves Me' with Oliver each night, "They are weak, but He is strong."

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong. 2 Corinthians 12:7-10
 

Five Little Stitches

Saturday, January 29, 2011

This morning had just barely begun. Oliver was done with his cereal. Bennett was done with his morning bath. Brian had just drug himself from the bed to the couch where he hoped to wake himself up. I sat on the couch reading blogs while I began to dream about what our day might look like.

It seemed we had a chance to do something today.  There was a small improvement in everyone's colds so we thought we might be able to go to the park to play or at least an afternoon family walk around the neighborhood.

But these plans all changed when Bennett, toddling around the living room, ran into our brick fireplace.  He's fallen before but never like that.  This was a fall onto the fireplace without even the safety of his hands to help.  It was one of those that made a sound where you knew it was bad even before he cried in response.

Also as soon as I saw the 1.5 inch gash started bleeding, I knew it meant stitches.

Brian and I were both panicked.  We used a towel to suppress the bleeding.  Everyone except Bennett was still in their PJ's.  We knew leaving for the ER meant we would be gone for hours.  We threw clothes on, grabbed a few things and left.

Fortunately, Bennett stopped crying once in the car.  And his bleeding began to slow.  In fact, once we arrived to the ER, Bennett seemed just fine.  But we knew that this little wound needed professional care.

It was a bit surreal to have to return to the ER again only days after we had just been there. 


This time, Oliver came with us.  He was excited about the whole adventure.  His favorite part was getting to hold the number card they gave us in the ER.   There are more people there this morning than on Tuesday night.  But our wait wasn't very long.


Once we got into a room, the nurse and doctor both came in to assess the damage.  The doctor agreed that we did the best thing by coming in.  He said it needed stitches.  Before leaving, they put gauze on it.  Bennett was in a pretty good mood by this point.


The doctor asked us if Bennett might calm down enough that we could hold him still for the procedure.  (Bennett sometimes goes hysterical when a doctor or nurse comes near him.)  We explained that he would not likely calm down.  The doctor suggested we give him Versid, a medication like Valium, to help him.  After we left the room, we explained to Bennett that we were going to give him medicine through his g-tube. 


I caught a few pictures of Oliver very sweetly explaining to Bennett what that meant to give him medicine through his g-tube.




Oliver shows Bennett how the doctor is going to put the medicine, "right there."


More spontaneous hugs from sweet big brother.


The nurse came in to hook Bennett up to an oximeter to monitor his heart rate.  Bennett was not thrilled.

We know all about oximeters.   They don't hurt but Bennett hates the little things on his toes.

My sweet boys wait while the Versid medication relaxes Bennett.


Within about 15 minutes, it was obvious the Versid had hit Bennett.  He was looking pretty relaxed, even drunk.  It was pretty funny.  He was awake but very chilled.


Brian was eventually able to lay Bennnett down on the bed.


Brian talks to Bennett.


Bennett loves his Daddy.


Eventually, the doctor and nurse came in to do the deed.  It's hard to tell how deep it was but it was surprising a fall on the brick could make such a mark!




Bennett had to be swaddled in order for him to be still during the procedure but he did really nice.  He received five stitches.


The finished product.


Bennett looks thrilled.


After the doctor was done, he wanted us to wait about 30 minutes to make sure Bennett woke up some more.  He wanted to monitor his heartrate to make sure Bennett was good to go home.  Shortly after the procedure Bennett had a diaper that went threw his pants (wouldn't you know?).  So, we just let Bennett lay out on the bed.  He didn't seem that interested in doing much else.



Bennett didn't seem to show he had much pain, which is good.  The doctor said a sort of "amnesia" affect on kids.  So, it is likely Bennett won't remember the episode...which is funny, really, since he is only 16 months so he won't remember anything anyway. :)




Bennett shows off his oximeter.




Daddy entertains Oliver with his smartphone.  Thank goodness for Smartphones!


Bennett plays cars on his bed.


We are now home and have resumed our efforts of recovering from a week of hospitals and colds!  They say things like this come in three.  Let's hope this was a our third and last hospital admission for quite some time!!

Back to the ER...Again!

We found ourselves back in the ER again this morning.  The good news: it's for a totally different reason.  The bad news: it involved stitches.  More details later.

Hospital Sponge Bath

Friday, January 28, 2011

After Bennett's Barium X-ray yesterday morning, Bennett needed a bath. Since he had an IV, I decided to give him a sponge bath. He loved this.

The nurse suggested that we cover Bennett's IV with a bag to keep it from getting wet.  (The little blueish green thing on Bennett's foot is an electronic monitoring piece that would warn the nurses if Bennett left the floor.  This is a safety mechanism that would prevent Bennett from being kidnapped.)


Before we began our bath, Bennett seemed concerned about his little arm in a bag.


But he quickly became more interested in the bucket of warm water sitting next to him. 

He loved splashing in it.


Compared to the rough time he had during his Barium X-ray, it was great to see smiles from Bennett.


Bennett tried to "wash" himself.


He did a pretty good job.  But mommy needed to finish the job.  After we were done, the nurse came in to recover the bed with new sheets.

An Update and What the Heck Just Happened...

It's nice to be home.  Everybody except Brian went to bed last night at 8pm.  Everybody except Bennett has a cold.  So, it was a fairly sleepless night for all of us except one.   While the three of us were up and down all night, coughing and trying to breathe out of noses (or waiting for the Sudafed to kick in), Bennett slept like a log.

In fact, Bennett slept a total of 15 hours last night...and only then woke up when we decided to wake him up.  We think he was just exhausted. 

You might not think two nights at the hospital is all that life-changing or that big of a deal. It's just like camping over the weekend, right?  Throw some stuff in a bag and get admitted.  Get discharged and carry about your life.

Well consider during your "camping experience", your baby gets attacked by wild grizzlies.

Yeah, that's the kind of "camp" experience we just had.

I am glad to made the choice we did (as though we had a choice).  I am satisfied that we are definitely in a better place with Bennett's health than we were two days ago.  But boy was that not fun.

:::::
I have a million thoughts I'd love to process in the next few days about our hospitalization.  But I'll back up and explain what exactly happened.  Some of this will be repetitive, since I updated as we went along.  But some of it may fill in holes that I didn't have time to address.

What the Heck Happened:
Tuesday night seemed normal until we noticed Bennett's rectal prolapse wouldn't go back into his body.  Unalarmed (since Bennett's rectal prolapse happens pretty often), we gave Bennett's bowel time to return to its normal place.  When it didn't, we called the GI doctor on call.  When the GI doc on call recommended us to go to the ER immediately, we knew it might lead to a hospital admission.

It was wonderful to know we had neighbors who have repeatedly offered to help us whenever we might be in a situation like this.  Our sweet neighbor Judy came to stay with Oliver (who had fallen asleep by the time we got word we needed to go to the ER).  Judy was able to fill in for us so we could both go to the ER.  (One of the things we have learned is how important it is to have each other there to make health decisions whenever possible, especially in emergency situations.)

Once at the ER, it was relatively quickly that we realized that the ER doc, as capable as he was, wasn't going to be able to get the rectal prolapse to go back inside as well.  Rectal Prolapse is kinda like a hernia.  It can be pushed back in if the abdominal wall is relaxed.  However, each time anyone tried to push the prolapse in, Bennett's natural response was to push it back out.  So, we were at an impasse.

We discussed the option of being transferred to Cook Children's in Fort Worth, for continuity of care.  However, the GI doctor on call at Cooks said we should not drive that far, but get under the care of the nearest pediatric surgeon as soon as possible.  Everyone's fear was that the longer Bennett's prolapse stayed out, the more likely he was to lose blood flow to his bowel and the more likely the bowel might actually die off.  If this did happen, Bennett would lose part of his bowel, which could be devastating.

So, it was decided that the Children's Hospital at Scott and White in Temple would accept us.  We asked the doctor if we had time to go home and pick up our other son, or at least pack a bag.  He wanted Bennett to go straight from Hillcrest Hospital to Scott and White but did tell us that in the amount of time it would take for them to discharge us, we would have time to run home (we live very close to the hospital in Waco) and pack a bag.

Brian left quickly to grab us some essentials while I got on the phone with a few close friends to find out if they could help us care for Oliver.  I focused on planning for Oliver one day at a time.  Our friend Lindsay came immediately to our house and picked Oliver up to take him back to her house, the home of one of Oliver's best friends.  He would stay there through the following day until we knew more. (Brian was able to say goodbye to Oliver, who was practically still asleep, and was able to relieve Judy from her nighwatch duty).

Brian returned to the ER shortly before we were given the ok to drive to Temple (fortunately, the doctors were supportive of letting us drive Bennett down the hospital so we could have our own car there - Our friend David helped us make this happen).

We arrived in Temple after about a 30 minute drive.  We were taken straight to a room that was prepared for us.  I noticed when we came in that the room had signs on the outside of it that said, "Isolation" with pictures of someone wearing gloves and an apron.  I knew it was because Bennett has C.Diff, a highly infectious bacteria.  I knew once we entered into the room, we were gonna be stuck for a while.  Bennett would not be allowed outside of the room except for procedures for our entire time there.  Because he has C.Diff and was in isolation, the hospital would not allow him to walk in the hallways or visit the play room at all during our stay - however long it would last.

A Surgery Resident came to visit us almost as soon as we arrived.  Scott and White in Temple is a teaching hospital for Texas A&M so we saw lots of residents while we were there.  After the resident came in, the Attending Physician and Pediatric Surgeon came in to assess Bennett.  It was then that we heard the plan for what was going to happen during our time there.

By the time the Pediatric Surgeon arrived it was midnight, more than 4 hours since Bennett's rectal prolapse had first come out, and the rectal prolapse was just starting to go back in on its own.  One thing we learned as that Bennett's sphincter muscle had not closed on the bowel, so Bennett had not lost blood flow and would not lose his bowel afterall.

The Pediatric Surgeon explained that Bennett had shown stage 3 rectal prolapse (the fourth stage is the worst) and that his rectal prolapse would only worsen without treatment.  She told us about our surgical options but said she didn't want to do surgery if Bennett had an active C.Diff. infection.  She suggested that we get the Infectious Disease doctor involved and see if we could clear up his infection.  If we could, then we would go forward with surgery.  In the meantime, we would stay in the hospital to monitor Bennett's rectal prolapse and make sure it didn't continue to be a problem.

Everyone was aware that Bennett's rectal prolapse (a classic sign of Cystic Fibrosis) was made worse by the fact that over the course of weeks, Bennett had been straining to have bowel movements up to 10 times a day.  The Pediatric Surgeon indicated that surgery might not be needed, if we could prevent the reason behind the rectal prolapse, but she also noted that Bennett's rectal prolapse was pretty severe.

The next morning, the Pediatric Surgeon suggested another idea - to have Bennett undergo a Barium Enema to confirm there was no anatomical reason for his C.Diff.  This Barium Enema would be held the following morning. 

That afternoon, we spoke with the Infectious Disease doctor about options for killing the C.Diff. infection.  She suggested a variety of different ideas to counteract the C.Diff.  She also wanted to do some extensive blood work testing to look at Bennett's immune system and other factors that might be making his C.Diff. difficult to eradicate.  The Infectious Disease doctor indicated it might be worth getting the GI doctor involved.  He would meet with us the following day after the Barium Enema.

By the time Thursday morning came, after which we completed the Barium Enema and after which the doctors had been able to observe Bennett to confirm his rectal prolapse was safe, the doctors started making conclusions.

It was decided that we would treat C.Diff. first through long term medication, and should that fail at any point, we would go forward with a Stool Transplant (we would be the first pediatric patient to undergo this procedure at Scott and White in Temple, if we do).  It was also determined that Bennett will end up having surgery for his rectal prolapse in the future, after his C.Diff. has been successfully treated.

We were discharged with a firm plan on how to deal with both issues, and with the confidence that we aren't going to be left to overcome C.Diff. and rectal prolapse all by ourselves.  It was also decided that Bennett would continue his Vancomycin for several more months and would not change his formula afterall.

::::

It has definitely been a difficult few days.  But it is pretty amazing how quickly things get dealt with in the hospital.  We were able to consult three different doctors within 24 hours, get numerous tests completed and come up with a very solid plan for dealing with Bennett's reoccurring issues.

Had Bennett's rectal prolapse not sent us to the hospital, Bennett would still be suffering.  We would still have another three weeks to wait until we saw the Infectious Disease doctor to come up with a plan for how to overcome his C.Diff.  And, we would not have any plan in place for dealing with his rectal prolapse.

As much as I hated being inpatient, it was truly a blessing in disguise.  We have some great and very competent doctors at our fingertips helping Bennett get healthy.

For one of the first times in months, I am incredibly hopeful for Bennett.  Cystic Fibrosis is a progressive disease, so we do know what lies ahead.  But so far, Bennett has had no lung issues, giving us confidence that if we can resolve this C.Diff. issue and his feeding issues, he has every chance to have a very normal life.

I cried a few times during our hospital stay.  Despite that I am used to have a child with a chronic illness, there is no way I can get used to seeing my child in pain.  But these moments are typically fewer than seeing our child experiencing joy.

We are incredibly thankful for which all that God has blessed us - the wisdom of doctors, many opportunities to see some of the best specialists, loving friends and family who help us on the sidelines, a disease and illnesses that can be managed.  God is good.  God is so so very good.

Oliver Visits Bennett

Thursday, January 27, 2011

:::EDIT: We are home, which is wonderful.  Bennett is particularly happy at home - walking around everywhere and playing with his toys.  I am a walking zombie.  I wanted to update tonight to clarify information and document other conversations I had today.  However, I am so tired I can hardly think straight.  I will share more details tomorrow.:::

Last night, Oliver came up to the hospital for a few hours to visit Bennett.  The Child Life Specialist had brought Bennett a play doctor's kid from him to play with at the hospital. 

During his visit, Oliver was particularly interested in playing doctor - gloves and all.

Dr. Oliver was very gentle with his patient.


Elephant didn't mind having his blood pressure checked around his waist.


Bennett, exhausted from his day, merely had energy to lie there and watch Oliver play.


Bennett fought so hard yesterday.  People were poking him and prodding him constantly.  He cried and cried until he could not cry any more.  It was sad to see him have so little energy by the end of the day.  But we could tell he was still very happy to see Oliver.


Nurse Bennett held the needle for Dr. Oliver.  We asked Oliver how many shots he was going to give Elephant.  Oliver responded, "5 minutes."


Oliver spontaneously reached over and played with Bennett, even giving him a kiss.

But what starts out as a sweet kiss on the cheek...

...can turn into giggles and play between brothers.