The Family

The Family
For Christmas 2010

Welcome to our blog!

We've decided to start at the beginning and work our way forward. You'll have to check back often as we chronicle the last 2+ years.

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Sunday, November 21, 2010

Missed It By That Much

Our appointment with the neurosurgeon fell on a Thursday, which just so happened to be the last day of July.  As it turned out, Nathan's doctor happened to be in surgery on the day off our appointment.  So we met with one of the neurosurgery residents while we waited for Nathan's doctor to finish in the Operating Room.  We explained everything that had been going on including the recent Lumbar Puncture and the appearance of the head bubbles.  They also took a measurement of his head to see exactly how big it was.

When it turned out that the surgery was taking longer than originally expected, the resident became unsure of what to do.  He didn't want to keep us there if he didn't need to, nor did he want to send us home if the surgeon didn't want us to go home.  So he decided to call up to the OR to find out what the surgeon wanted done.

Now this is where it gets tricky...and quite entertaining actually!

Neurosurgery is quite delicate.  It is BRAIN SURGERY after all!  So the resident would leave a message and then the message would get relayed to the surgeon when there was an opportune moment.  The surgeon would then send a message back to us, often asking for additional information or further details on Nathan's condition.  That message would then be relayed back to the resident who would then tell us.

We would then provide the answers or information that the surgeon had requested to the resident and we would repeat the entire process.  Sometimes we were waiting just a few minutes to hear back.  Other times we were waiting for 10 or 15 minutes.  It all depended on what was going on in the OR.

We were very grateful, though, that the surgeon took the time and attention necessary for his patient, because we would expect nothing less when he would be operating on Nathan.

Finally, when the surgeon had all the information he needed, he sent word back that he wanted to admit Nathan to the hospital.  The Third Ventriculostomy just wasn't working like we all had hoped.  Nathan's head was just growing too fast.  And it was becoming too dangerous.  The Lumbar Punctures weren't working as effectively as he had hoped either.  And since Nathan had had one about two weeks before, he was hesitant to do another one so soon.

So that left him with no other option but to admit Nathan to the hospital and try to work out another shunt.

We felt that this was unfortunate for a number of reasons.  First, we had agreed to the Third Ventriculostomy because there were really no good shunt options left.  So that was really scary.

Second, it was the last day of July.  And Nathan had never made it through an entire calendar month out of the hospital.  So that streak was going to stay in tact.  What made that doubly sad was that it also happened to be the 36th day in a row since Nathan was last in the hospital, which mark he had gotten to twice before.  So even with all of the good things that had happened and all of the progress that Nathan had made developmentally, he wasn't even able to set a new record for consecutive time at home.

Instead, we were making plans to have Nathan admitted to the hospital and had to start thinking and praying about what kind of shunt to do this time.

Head Bubbles

In spite of being so underweight and constantly dealing with "head issues," Nathan was really starting to make some great steps developmentally.  He still struggled with anything really hard, like sitting up on his own, crawling, standing, or anything else that required major head control.  But he was holding toys really well and transferring them between hands and had actually started to jabber quite a bit too, which was really fun.

All in all, though, we were quite pleased with how things were progressing, with the exception of Nathan's head growing again.  Despite that fact that he had just had the Lumbar Puncture less than a couple of weeks before, his head was approaching pre-LP size again as the end of the month neared.  And most odd was that he started to get "bubbles" appearing in random places on his head.  If you look closely, you can see one in this picture near his hairline on the top right side (your left) of his forehead:

Honestly, the bubbles were really freaky.  It was almost like the pressure inside his head was so intense that it was looking for whatever avenue it could find to escape, even tiny little fizzures in Nathan's skull.  Very scary!

So with not really any other option, we called the neurosurgery department to schedule an appointment.  Nathan's surgeon had returned from his teaching expedition in Africa and scheduled us to see him in a couple of days.

Sunday, November 14, 2010

Four Words That Make You Think You're a Bad Parent

In spite of Nathan's recurring head issues, he was finally starting to gain weight!  Six months before, when we had brought Nathan home from the NICU, he weighed just over 16 pounds.  In the first 5 months home, he hadn't gained more than a pound and a half.  The lack of weight gain was primarily due to the fact that he was always sick and throwing up and spending so much time in the hospital.

Now, however, Nathan had finally started to gain weight.  As we neared the end of July, Nathan had reached an all-time high, weighing nearly 18 and 1/2 pounds!  Needless to say, both of us were really excited that he had finally started gaining significant amounts of weight.  For so long, Nathan had just seemed so...well...fragile for want of a better word.  He was just so thin and bony.  Sometimes, when picking him up, he almost felt somewhat breakable at times.  So as I mentioned, we were very, very pleased that he had finally started gaining weight.

Nathan's weight gain was likely due to three things.  First, the G-Tube.  It sure made feeding Nathan a lot easier and more convenient, and Nathan seemed to enjoy not having the tube going up his nose anymore.  Second, his pediatrician had had us raise the calorie content of his formula to a higher concentration.  And third, he hadn't been throwing up as much or been in the hospital in the month.  So all together, it was a working combination that had helped gain almost as much weight in one month as he had in the previous five.

Unfortunately, Nathan's pediatrician didn't share our same enthusiasm.  While he was pleased that Nathan had finally started to gain weight, he was still well, well underweight for his age.  This point was driven home to us during our weekly appointment.  As we were discussing Nathan's progress (or lack thereof in many areas), the pediatrician mentioned that Nathan was "malnourished." 

Now, when I heard the words "your child is malnourished" I just about fell over.  Never once did the thought ever cross my mind that Nathan was malnourished.  In my head, malnourished was something that described starving children in Africa, the kids I had seen in the 'Feed the Children' commercials growing up, not something to describe my own son. 

Never did I ever feel like a worse parent than I did at that moment when I found out that my own child was malnourished.  To try and soften the blow a little, I asked if we could say he was "undernourished" instead of "malnourished" because it seemed considerably less harsh.  The doctor consented since it would make me feel better, but it didn't change the fact that Nathan was well, well underweight.

Thursday, November 11, 2010

Lumbar Puncture #2

Since Nathan's head size was kind of getting out of control, especially the strange bulge, we decided he needed another Lumbar Puncture (LP) to try and "jump start" the Third Ventriculostomy into draining better again.

For a more thorough review on Lumbar Punctures, you can re-read this blog post.

It had only been about a month since Nathan's last LP, which is not really a lot of time in the big scheme of things.  So there were pros and cons to doing it again, especially doing it again so soon.

The good news was that the last one worked so well to stimulate the drainage in Nathan's head, that there was actually quite a visible difference in the before and after head sizes.  So we were very optimistic that another LP would have the same 'magical' effect.

The bad news was that Lumbar Punctures can be very painful.  And Nathan had been through so much already, that we were really hesitant to subject him to any more painful procedures.

But on the other hand, was an LP every month better than going through shunt after shunt after shunt that didn't work?  Especially when there was so much uncertainty surrounding what we would do if the Third Ventriculostomy failed and they had to put in another shunt.

So we called to scheduled an appointment with our neurosurgeon, but it just so happened that he was in Africa on a medical teaching tour.  We knew ahead of time that he would be gone, so he arranged for us to be seen by one of his partners if we needed anything while he was away.

Unfortunately, when you see a doctor who is not your regular doctor, the experience isn't always quite as smooth as you'd like or hope it would be.  I think we were expecting to roll in, get the LP, and roll out.  But, as is probably likely with any new doctor, we had to explain what was going on with Nathan and why we were there.  And when we brought up the Lumbar Puncture, it seemed like we sensed a little bit of incredulity like "Why the heck would you want to have your kid get a lumbar puncture?"

I feel like we had to almost pull teeth to try and get him to listen to us.  Finally, he had the resident go and read Nathan's file to see what Dr. Riva-Cambrin had said.  Fortunately, he had left a note in Nathan's file that said basically "Try a Lumbar Puncture to see if that will kick-start the Third Ventriculostomy."

With that, he was now willing to go ahead with the LP.  In hind sight, it's easy to understand his hesitance to go ahead with the LP, but in the moment it was very, very frustrating to feel like we weren't being listened to.

I think in general, that one of -- if not THE -- most frustrating part of dealing with health care professionals is that they often THINK that they KNOW more about the health of your child than you do.  Now granted, they do know more about health and medicine than I do, but I know my child better than they do.  And it can often be so hard to find a middle ground starting point without some type of frustration, mild or severe.  But I digress...for now.

Anyway, in case I haven't mentioned this before, I hate seeing my boy in pain or distress.  It hurts me and dang near breaks my heart.  And I know that the LP is very uncomfortable and can be very painful, especially to a 10-month old baby!  So I politely excused myself and went and hid in the farthest corner of the waiting room.

Meanwhile, Bekah stayed in the exam room with him and sang to him and tried to do the best she could to comfort him.  She's good like that.  And Nathan has always found her singing comforting and calming, too.

I on the other hand thought that I could hear Nathan crying all the way across the waiting room and down the hall.  I don't know if I actually could, but in my mind it was as sure as anything.

After a few minutes, the nurse came out and motioned to me that it was now safe to go back inside.  When I got back inside, it was very apparent that Nathan had been crying.  So maybe I wasn't imagining it after all!  At this point though, he was mostly whimpering instead if crying.  Bekah had already put him back in the car seat carrier, and he just looked so sad.  So I took his little hand in mine and asked him if he was ready to go home.  And in a very whiny and pathetic voice, but very, very clearly, Nathan said: "Yeeeaaaah!"

And so we did.

Sunday, November 7, 2010

What's That Strange Bump on Your Head?

As Nathan's head continued to grow, one of the most bizarre side effects of his situation was an odd bump that started forming at the site of his most recent shunt surgery.  In these two pictures you get an idea of how big Nathan's head was actually getting and you can see the bump we're talking about, almost right on top of his head.

When you first looked at it, the bump on Nathan's head looked just like a bump you might get if you hit your head.  But Nathan's bump wasn't hard or solid.  In fact, it was just....bulgy....for lack of a better word.  If you pushed on it, it would go down and be flat for half a second. and then slowly fill back out into the same bubble-shaped bump.  But we tried hard not to push on it because every time we did, Nathan would almost instantly throw up.

While we knew that the odds of this actually happening were quite low, we both worried a little that one day the pressure inside his head would get to be too great and the bubble would pop or explode or something.  Which was actually a very scary thought, even though the likelihood of it happening was infinitesimally small.

Nonetheless, we decided we should probably take him up to see the neurosurgeon and get another lumbar puncture to see if that would help decrease his inter-cranial pressure and head size again.

Monday, November 1, 2010

"Your Baby Has a Big Head!!!"

Amid all of our internal emotional and spiritual struggles, Nathan was still having some problems of his own.  Most notably, his head was still growing.  We had hoped that the Lumbar Puncture would have served to keep the hole in the third ventricle open and draining, but that didn't appear to be the case as Nathan's head continued to expand.

The neurosurgeon recommended that we continue to monitor Nathan's head size an growth, so we continued to take our weekly trips to the pediatrician's office to get his head measured.

Remarkably, Nathan was actually coping really well with his ever-increasing head size.  Where previously his eyes would be getting all freaky and he would be throwing up all over the place all the time, he was actually doing quite well.  His eyes were staying normal and he was vomiting considerably less than the previous times he was having pressure issues inside his head due to the hydrocephalus.  So we were really hopeful...if it wasn't for his head continually growing.

Even though Nathan was coping remarkably well with his situation, we weren't.  Me in particular.

Because Nathan's head was continuing to grow, it was playing a big factor in delaying his development.  Because it was so big and heavy in relation to the rest of him, he didn't have the strength to hold it up.  So he couldn't crawl because he couldn't lift his head up.  He couldn't hold it up to sit up.  He was able to roll over at this point, but even that was a struggle for him sometimes.

It was also a struggle for us to see him so far behind developmentally.  Especially when we would see other babies Nathan's age or younger sitting up, crawling, or even walking.  It was hard to not be hurt or envious or even resentful of these other little kids and there normal-sized heads.

Additionally, I was also developing another, somewhat secret, fear.  As Nathan was nearing 1 year old, his head shape was becoming more formed and less changeable.  My ultimate fear was that his head would continue to get bigger and bigger and then "freeze" in some huge, unhuman shape and that he would either end up looking like "The Brain"

Or that guy from that cheesy superhero movie "Sky High"

Granted, these fears were highly irrational, especially since the neurosurgeon had given us the "maximum growth point" that he was willing to let Nathan get to before taking action.  But it didn't help either when one of the little neighborhood girls came up to us after church services one week, took a look at Nathan and said "Your baby has a big head!!!"  And all we could do was nod and agree.

But perhaps the hardest part was trying to explain to my family why Nathan's big head was such a big problem.  For whatever reason, they just didn't seem to understand why his having a big head was such a big deal.  No matter how many times I tried to explain it.  The rebuttal was always, "Well, you have a big head."

"Yes, yes," I would reply.  " I know I have a big head.  But mine has stopped growing.  Nathan's hasn't.  And until we can get it to stop, it's going to be a big problem."

Tuesday, August 31, 2010

My Reflections - Part 3

Now I come to the most interesting part.  Thomas had his healing experiences working through his anger and found peace.  It was a big relief to him, and should have been for me too.  It was a relief for a while, but then before long that changed.  I started thinking more about all those things that hadn't bothered me for all those months, and for some idiotic reason that I still don't understand, they started to bother me.  I was annoyed that Nathan had been in the hospital for so long with no visits.  I was annoyed that I didn't have anyone to confide in or with whom to share my burdens.

And then I was annoyed that I was annoyed.  It just added to my feelings of instability that these things hadn't bothered me until Thomas had brought them up.  Why didn't I get bothered on my own?  Am I so easily swayed?  Can't I make up my own mind?  Not only did I feel like I had no control over my emotions, I felt like I had no control over my opinions.  I was frustrated, and frustrated that I was frustrated, and I didn't know what to do about it.  Was this something that, like Thomas, I needed to work through on my own, or did I need to work through this with a therapist or an ecclesiastical leader?  Was there someone I should talk to, or did I just need to repent and forgive? 

My healing process was a long one.  For a long time I just tried to push it aside and ignore it.  But it kept cropping back up.  I found myself at church unable to listen to what was being said because I was annoyed.  I prayed for help to let go of my hurt and irritation, and for help forgiving those I imagined had hurt me.  I reminded myself that no one had tried to hurt me, that we had not told anyone that we were hurting.  How could I expect that people would meet my needs when they did not know I had any?  I was afraid that if I talked about this with someone from church that it would just sound like complaining.  I wondered if I just wanted attention, if I enjoyed people telling me how strong I was.  Did I just want to be admired?  The worst was that I didn't want to talk about this with Thomas.  I felt like he had made his peace and I was afraid that if I brought this up then his anger would be rehashed and I did not want him to have to be angry again.  I didn't know what to do, so I just kept ignoring my feelings.

Over the next 2 years I talked myself out of being angry and just felt annoyed.  The practical side of me told my emotions that they were unreasonable, and that was enough to keep them at bay.  I became better friends with some ladies in our area, so I had someone I felt comfortable asking for help when we needed it.  And little by little I did heal.  I was also able to see that people are not perfect, myself included; that no one had intended to hurt me, or even been aware that I was hurting, and that that was as much my own fault as anyone else's.  I learned to look back and be sad that things had not been better, but not feel so hurt anymore.  And I decided that I wanted to do what I could so that other people did not have the same experiences we had.

My Reflections - Part 2

I decided I needed to reach out.  Nathan's health was a roller coaster, so the only way I could see to find some stability was to find something else to care about.  Not something to care about instead of Nathan, something in addition.  I needed to have some other source of validation and comfort and relief. 

Of course, finding a way to reach out that did not add to my stress and that would work around my unpredictable schedule was not easy.  I started very, very small.  In our church the ladies have a friendshipping program.  Each lady in a congregation is paired with a companion and assigned 2 or 3 other ladies within the congregation to visit every month to strengthen friendships, to offer comfort, and to bring spiritual uplift.  Unfortunately, the companion I had before Nathan was born moved away right after he was born, and I had been unable to connect with my new companion once I started spending all my time in the hospital.  And without the support of a companion I just had not been able to motivate myself to visit other ladies since.  So, in my newly found desire to serve, that was what I decided to start with; I would visit the ladies I was assigned to visit, with or without a companion.  It was a little tough at first and I felt a little awkward, but it gave me a chance to get to know a few new people, and it was very uplifting to my spirits.  I was glad I was trying again.

This brings us to the time when Thomas was starting to get really frustrated, and he began to feel the anger he has talked about.  This was a hard time at home.  Thomas was so frustrated and angry and I really wanted to help him, but I just did not know how.  So when we talked about how we were doing and Thomas would talk about his frustration I tried to just be supportive.  I listened and agreed that things were hard, agreed that I wished things were different, and on occasion I tried to suggest things to help the situation.  When Thomas complained that he did not have friends, I suggested that he try to make some friends, or that we have someone over for dinner, or for games or something.  This was not the kind of thing he wanted to hear, and I was not about to press the issue.  I wanted to be supportive and loving and calm, hoping to diffuse some of the anger and the tension that came with it.  I never felt particularly helpful or effective, but I knew that he knew that I loved him, and that would have to be enough.

It was interesting that all the things that bothered him did not bother me as much.  When he talked about what bothered him I could see what he was talking about, and I agreed that things could be better, but somehow I was not frustrated like he was.  As I have looked back and thought about it in retrospect I think there are two main reasons for this.  One reason I think, is that I was feeling more of that compassion for which Thomas was wishing.  If we were at church and someone was going to come over to ask us how things were going, it was likely to be a woman, and therefore she was likely to come speak to me.  And if someone came to me at church and asked me how Nathan was and Thomas did not happen to be by me, I might not remember by the end of church to tell him that it had happened.  So I probably saw more of our congregation's love and concern than Thomas did, and so I think I wasn't as frustrated.  The other reason I touched on a little already.  I think I felt a need to try to keep as much peace in our home and in our lives as possible, and I knew that if I were to join in the frustration, it would escalate.  I already had so much stress and tension on my own, I did not want to add more.  But not sharing Thomas' anger did not keep me from being very worried for him.

My Reflections - Part 1

Well, now that Thomas has gone through his story, he has asked me to write about what I was feeling and thinking through all of this.  So here goes.

Let me try to take you back a couple of months to begin.  We were in the middle of Nathan having many shunt problems.  He'd been out of the hospital and back in again several times, always for shunt problems, which meant that he was always vomiting while he was home, and he always had surgery when he had to go back to the hospital.  I was so fortunate as to have been able to be Nathan's primary care giver at home.  I was not working outside of the home, but was able to dedicate myself full-time to taking care of our boy.  This was not only what I wanted, but was probably the most practical option for us at the time since the amount of care Nathan needed would have required us to hire a nurse, or something close to that, in order for me to work and I probably would not have made enough to pay for that anyway.  But since Nathan did need that degree of care, and I was devoted to that full-time, that was pretty much all I did.

So for about 8 months Nathan had been my biggest, and essentially my only focus.  In many ways that is just how it should have been, and I do not regret it at all, but in many ways it was very wearing on me.  I was very tired of sitting in the hospital.  Being in the hospital is lonely and boring and stressful.  But when Nathan was home, he was very often sick.  Depending on how close Nathan was to needing another shunt revision, he would throw up as many as 7 or 8 times a day, and each time I had to clean him up, and clean up whatever he'd been lying on, and sometimes clean myself up.  And each time I also worried and wondered if he was ok and if we'd be back at the hospital again by the end of the week.  I was so stressed out all of the time.  When Nathan was really bad I felt like I could not leave the room because I was afraid that he would throw up and choke while I was gone.  Being in the hospital meant some of Nathan's care wasn't my responsibility, but it meant a lot of driving, a lot of sitting, and it meant he was too sick to be home.  It was all very, very draining. 

I started to feel very unstable, like I had no control over my emotions.  If Nathan had a good day, I was doing well, but if he threw up a few times, or if we had to go back to the hospital, I was so sad and disappointed that I just plummeted.  I was so absorbed in Nathan's life and health that his health determined if I was ok or not.  I was on such an emotional roller coaster, I didn't know from one day to the next if I would be walking on clouds or sobbing in the floor.  It seemed like I was always on the verge of a major breakdown.  It was really hard on Thomas too.  He did not know how to help me and he wanted to so much, and he never knew if he was going to come home to find me smiling or crying.  I felt so bad for bringing more turmoil and anxiety into our home, but I did not know how to escape the roller coaster.

Sunday, August 15, 2010


Even though I had found a measure of peace and comfort, I was still feeling a little unsettled.  I had gone through the anger.  I had gone through the complete despair.  And I didn't want to go through any of that again.  So the thing that was still so disconcerting to me was that I still felt that so many of my prayers had gone unanswered.  Specifically, the ones where I prayed so hard to have a friend, to have someone just want to come over talk and listen and help share the burden.

Having a child who is constantly sick and in the hospital is very tiring -- physically tiring, emotionally tiring, spiritually tiring.  In fact, it's down right exhausting at times.  And not having more of a resolution was leaving me feeling a little vulnerable to a possible relapse.  Not that I wanted to be angry or sad all over again, but I felt that if I wasn't careful that I would be susceptible to a setback.

So instead of praying for "someone," I tried to rely on the Lord, to trust in Him, and to pray for strength and understanding.  Fortunately for me, my Heavenly Father was merciful to me and gave me the understanding I sought quicker than I expected.  It wasn't but a few days after I had been partly comforted that I was blessed with what I consider to be wonderful understanding and insight.

I was just getting home from work.  I happened to be on the phone with my mother.  She worried a lot about Nathan and wanted updates on him almost daily.  So as a good son I would always try to comply.  I would usually wait until I got home, though, so that I could get an update on the day from Bekah before calling her.  If I happened to miss a day or two, she would always become anxious.  And when she could no longer wait, she would call me.

On this particular day, she happened to call before I had gotten home from work.  I was just pulling into the driveway when I answered her call.  She asked how her grandson was doing, but I was having a hard time hearing what she was saying.  Between all of the cars passing on the street, the people playing outside, the music from the ice cream truck, and me being distracted getting the mail from the mailbox, I had a hard time giving her the attention that she deserved.

And that's when the inspiration struck me: Noise.

I had previously spent many an evening, pouring out my soul to my Heavenly Father.  Asking...pleading with Him to inspire someone to come over, to come spend a few minutes visiting with me.  And after every single prayer, I always expected a knock on the door or the phone to ring.  I really, truly believed that it would work that way.  That's how I had been taught.  That's what I believed.  That's what I expected. 

But when there was repeatedly no one at the door and when the phone was repeatedly silent, I began to question if my expectations were too high, or if my beliefs in such miraculous promptings were erroneous, or if maybe I was unworthy of such a blessing.

I've mentioned before that we believe in a very real and a very personal God.  One who cares about each of us.  One who hears and listens to our prayers.  One who wants to bless us.  One who wants to answer our prayers.  I also believe that very, very frequently Heavenly Father uses others to answer our prayers.  And therein lies the potential to have a breakdown in communications.

If God is going to use us as a means of answering the prayers of others, we have to put ourselves in a position to "hear" Him when He communicates with us.  But unfortunately, each of us has personal "noise" that either distracts us from giving God the full attention that He deserves; or the noise is too "loud" and makes it hard to hear Him.  Both can prevent us from properly listening to the inspiration or promptings that the Lord is trying to give us so that we can be a help or benefit to someone in need.

The "noise" of which I speak can be a variety of things, some of which may include (in no particular order):
  • our own problems and concerns
  • we think we are too busy
  • we think someone else will take care of it for us
  • someone talks us out of it
  • laziness
  • pride
  • anger
  • not recognizing the inspiration when it comes
  • many other things
I came to understand that evening that my Heavenly Father really was desirous to answer my prayers.  He was trying to let people know of our needs, but that those he was trying to inspire were distracted by various incarnations of "noise."

I also felt more than a little admonished myself.  How often over the last couple of weeks had He been trying to communicate with me and His voice had been drowned out by the noise of my anger?  It wasn't until I had rid myself of anger and humbled myself more and remembered in Whom I should trust, that I was ready to receive this glorious inspiration.  So I couldn't hold it against anyone else that they had succumbed to noise.

For me, once I had this understanding, I was good.  For the first time in a long, long time, I was good inside.  My heart and soul felt healed.  I understood that my Heavenly Father still loved me.  That He wouldn't let me down.  That it was on Him that I should rely and put my trust and not anyone else.  Everyone else can get distracted by noise.  But Heavenly Father is always there, always listening, never distracted.

So that day I made the conscious choice to rely more on my Heavenly Father.  To trust Him more.  To look to Him more for strength, for hope.  And to rely less on those who are so easily distracted by noise, myself included.

Monday, August 9, 2010

Finding a Measure of Peace

With each step I took away from the chapel, the more I regretted leaving.   I had really, really wanted and hoped to speak with someone, to help me feel better.

But at the same time, the further I got away, the more it seemed like staying would have been the wrong decision and that I had made the right choice.  If it was me against protocol, I didn't see that I had a chance to win.

Protocol is a very...necessary part of organization.  Protocol exists to ensure that there is order.  As I've mentioned before, the three gentlemen who are asked to serve in the main administrative positions of the ecclesiastical unit do so on a voluntary basis.  Outside of church, they have full-time jobs and families that occupy most of their time.  The time they volunteer to other members of the community congregations is taken out of their free time. 

So without protocol, it is very easy to imagine people calling them or visiting them at home all the time.  So I understand protocol.  As I said, protocol is necessary.  But sometimes protocol can be very frustrating.  Very, very frustrating.

You want to think...hope...believe...that the love of God and love of neighbor would, at least on occasion, trump protocol.  So I couldn't help but think that if Jesus was actually here, he would have time to help heal my heavy heart, just like he did for all those people nearly 2,000 years ago. 

And I really, really wanted to believe that one of them would have similar compassion and take the time to meet with me, to counsel with me, to advise me, to love me...but I just didn't know for sure.  So I wanted to stay, but I guess, in the end, I just believed that protocol would win, and I couldn't take the rejection.  So I left and walked home.

And when I got home, I did the only thing left to do: I prayed.

I prayed hard.  I poured out my soul to my Father in Heaven.  How I felt alone.  Abandoned.  Hollow.  Empty.  Disappointed.  Sad.  How sorry I was that I had gotten so angry.  How sorry I was that I felt like I was losing hope, losing faith.  I also expressed how grateful I was that, for the most part, I felt like He had always listened to our prayers.  To my prayers.

Nathan was still with us.  Despite all of the days in the hospital.  All of the surgeries.  All of the times we had come so close to losing him, he was still with us.  And that meant something.  It meant something huge. 

It meant that there was still reason to hope.  We had not been abandoned.  We were not alone.  God was still with us.  He still loved us.  And He would continue to be with us and support us through our trials.  I could have absolute faith in Him and He would not let us down.

And for the first time in a couple of weeks, I felt good inside again.  No anger.  Much less sadness.  I felt comforted.  I felt a measure of peace in my soul.  I felt like God had put his arm around me and said "Trust me.  You'll be OK."

And I believed I would.

Sunday, August 8, 2010

Searching for.......Something Else

I had hoped that venting all of my anger and frustrations would prove to be therapeutic and cleansing.  And in a way, it was.  I was relieved to have the anger out of my system.  I had also expected that once it was gone that I would quickly return to being happy.  But it didn't happen that way.

Instead, I was swept over by a huge tidal wave of sadness and despair that flooded in to fill the giant empty space that had so recently housed my anger.  Indeed the sadness and despair filled me up just as much as the anger had.  Instead of being fueled by rage, I felt overcome by complete misery and grief.  It was like a giant rain cloud of sorrow and melancholy had parked itself inside me and was drowning out my faith and hope.

And honestly, it was worse than the feelings of anger.  I felt trapped inside my own sadness and sorrow with no hope of escape, almost like being trapped inside a well with no way to get out.

I was disappointed in myself that I had let the anger get the best of me.  I was saddened in my own actions, that I had let the actions, or inactions, of others get to me as much as they did.  But mostly I was saddened that I had prayed so hard and so earnestly with all of my heart and with all of the energies of my soul, only to not have my prayers answered.

After counseling with Bekah, I decided that it would be best to try and visit with one of the gentlemen who administrates the larger ecclesiastical unit of which our local congregation is a part.  I knew that they were in their offices on Tuesday nights, so the first Tuesday night that came around, I made my way over hoping to seek help, guidance, inspiration...something...anything to help lift the heavy weight of sorrow that was weighing my heart down.

I didn't have an appointment, so I waited until they were almost done with all of their business, hoping to get in for just a few minutes near the end.  As they were finishing up, someone came out and asked me how they could help me.  I mentioned why I was there and that I was just hoping to speak with someone for a few minutes.

I was very politely informed that what I was doing was "out of protocol" and that "those types of appointments" are usually done by referral from the leaders of the individual congregations.  And since I didn't have an appointment it was unlikely that I would get to see anyone, but that he would see what he could do.

So I waited for a few minutes, debating what to do in my head.

Realistically, considering my then lack of trust in my own congregational leader, I didn't see that getting a referral from him was even a possibility.  So I considered this my one shot.  I understood very well the importance of "protocol," but there are always exceptions aren't there?  I didn't know.  That I know of, there's no set way of dealing with "exceptions."  Each group can deal with it the way that they deem best.  So I had no idea what to expect.

But I was already feeling so, so low, that I didn't feel that I could take what I would consider to be a "rejection," if they told me that they couldn't meet with me, even if they meant well and were just following protocol.

So I decided to wait a few more minutes.  I felt that the longer I had to wait, the less likely it was going to be that I was going to get an appointment.  And as the minutes went by, the less and less hopeful I became.  So I decided to start making my way back home.  But I decided that I would take my time getting there.  It was my way of both being hopeful yet realistic at the same time.

So I first stopped in a commons area, close enough to the offices that they could still find me if they needed to, but one step closer to the door for me.  So I paced around for a couple of minutes when someone poked their head in to find me.  My heart perked up a little, holding out hope that he would invite me back.  But he said that he was still waiting to find out and asked me to just wait for a few more minutes.

In my heart, I wanted to wait a few more minutes.  I wanted to wait however long it was necessary.  But my head kept telling me that I was going to be disappointed.  And I really couldn't take any more disappointment.  I just couldn't get over the internal struggle I was having between hoping that someone would take a few minutes to talk with me, and the realization that they might say no.

In the end, I decided that it was better to just go home than to take the chance of suffering additional heartache and disappointment.

That decision hurt so bad that I cried all the way home.

Sunday, August 1, 2010

Searching for.......Something, Part 2

To be honest, I was a little worried about my meeting.  From what little I knew about Robb, he seemed like a good guy.  I was a little scared to just dump all of my problems on him.  I was scared how he would react.  But I was most scared that my anger would get the best of me and that I would just end up yelling at him and not get any resolution about my anger.

So I took a few days to think about why I was actually angry.  What was it that was causing me to be so mad?  As I thought about it, I was able to pinpoint exactly what was bothering me and why it had caused me to become so enraged.  That way I was hoping I could accurately (and nicely) express everything that was bothering me without jumping down Robb's throat.

As we greeted each other and shook hands, I sent up a silent but fervent prayer that I would be able to express myself fully and completely while at the same maintaining most of my composure.

After exchanging cordial pleasantries, I could see by the look on his face that I had completely taken him off guard when he asked me how I was doing and my simple but direct reply was "I'm very upset."

After inquiring as to why I was so upset, I told him that I realized that he was fairly new to the neighborhood and to this position and that I hoped that he didn't take anything that I was about to say too personally, but that I had a lot on my mind and in my heart that was making me angry.  And then I let it go.

While I wasn't quite yelling, my voice was loud and full of anger.

I recounted our story.  How Nathan was now 10 months old and had spent a total of 6 months in the hospital, including his first 4 1/2 months.  How during that time no one from the congregation, and in particular the congregational leadership, had ever been up to the hospital to check on Nathan.  To see how he was. To see how we were doing.

I asked him if he knew how lonely it was to spend what seemed like all of your time at the hospital, wondering if your child was ever going to be able to live a normal life, or even to spend more than 5 weeks out of the hospital at any given time. 

Did he know what it's like to feel like you have to go through all of that alone because either people don't know, or don't care, or they're too busy, or whatever other reason?

Did he know what it's like to feel like your a second-class member of the congregation?  Do you have to be in the congregational leadership to experience an outpouring of love?  To have people come and visit you in the hospital?

I explained that I understood that it may be inconvenient to have to travel a long distance to see Nathan in the hospital, but is that what we were?  Were we an inconvenience?

I said that I know it's an hour to drive up there and an hour to drive back.  And if you choose to stay a decent amount of time that's probably another hour.  I explained that I realized that 3 hours in a day can be hard to arrange, but finding 3 hours in one day out of 6 one can do that?

I mentioned that our apartment is only a 5 minute walk away.  And still no one could find time to stop by and take a few minutes to sit down with us and find out how we're doing?

Or is it because we come to church services every week that people think we're doing all right?  Do we need to stop coming to church in order to have the congregational leadership know that we were having spiritual and emotional needs and struggles?  Is that what we had come to?

I don't know how long my tirade went on, but I felt a little better getting everything out there in the open.

I'm sure Robb felt overwhelmed with everything I had just laid on his shoulders.  But to me, his reaction will forever be priceless.

He didn't get angry.  He didn't tell me how horrible I was for having these feelings.  He didn't call me to repent.  He never got defensive.

Instead, he just looked me in the eyes and very sincerely apologized and said that I was right.  They should have done better.  He should have done better.  He should have been more involved.  He should have done something.

And then he apologized and asked me to forgive him.  And promised me that he would do better.

I was in complete awe at the humility of this great man.

His attitude and response completely melted away my anger.  I knew that he cared.  I knew that he was sorry.  And that's exactly what my heart needed that day.

Searching for.......Something, Part 1

Anger is a lot like a big, noxious weed.  It's roots run deep and they can be very hard to pull out.  But if you don't do something to get rid of it, it will eventually choke out the good in you, overrun your heart, and leave your soul a barren and destitute wasteland -- a deserted shell of the beautiful oasis it should be.

So I knew that for the good of my family and the good of my soul, I had to rid myself of the anger that raged inside my heart and threatened to destroy me.  But I didn't know what or how.

Generally, these types of issues are addressed with the congregational leader.  As your ecclesiastical leader, he basically has charge over your spiritual well-being.  To give you counsel and advice.  But considering the circumstances and my feelings at that time, I didn't trust him and I didn't trust myself with him.  So I didn't consider that an option.

But I needed...something.  It's hard to put into words exactly what I felt I needed.  I needed someone to help share my burdens.  I needed someone to care about how I felt.  Someone to care about my anger.  Someone to care about me enough to let me be angry and not judge me.  Just someone to.....understand.

Our local congregation is part of a larger administrative unit composed of similar congregations from around the neighborhood.  Three good and honorable and spiritually inclined men oversee the overall function of this bigger unit.  Like those asked to serve in leadership positions in the individual congregations, the men are selected from among the members of the local congregations that comprise the larger unit.  Likewise also, they are not paid for their service or time, but rather freely donate them as an act of charitable service.  They accept the duties and responsibilities of service out of their love for God,  their love for their neighbors, and their desire to help and assist them in any way that they can.

These good men and are assisted in the day-to-day administration of the unit by a large number of good men and women whose responsibility it is to teach those in similar leadership roles in the local congregation how to more effectively serve those they are called to lead.

So I considered trying to "go up the chain of command," so to speak, and seek advice and counsel from one of the gentlemen who oversee the larger ecclesiastical unit, but another option presented itself before I could give that a try.

In addition to the main ecclesiastical leaders, each individual congregation also has supplemental leaders that assist in the day-to-day administration of the congregation.  The men, the women, the youth, and the children, are all provided with individual group leaders, also selected from among the members of the congregation, to serve as teachers and examples on how to try and live a good life and follow the teachings of the Lord from the Scriptures and the guidelines of the Church from the church leaders.  They also volunteer their time as they serve in their positions.

The man who was asked to serve as leader of the group of young, adult men (of which I was a member) was fairly new to the congregation and had only been in his position for a short time.  And it just so happened that he wanted to get to know each of us better, what our needs and concerns were, and how he could serve us better.

So here it was!  Here was my opportunity!  This is what I was looking for.  My chance to talk with someone.  So I took the first available appointment time to meet with him.

Tuesday, July 20, 2010


Anger is a vile and dangerous beast.  It is an evil and deadly monster.  It doesn't care for you, but rather wants to destroy you.  Anger is a sneaky and tricky poison.  It lies to your body and mind and makes them think that being angry feels good and that it is something desirable.  And it does this while feasting upon the very goodness in your very soul.

And it was my constant companion.  It went with me wherever I went.  It burned inside me like a raging inferno.  And it made me believe that we were friends.

The truth of the matter is that I was fed up with everything.  I was fed up with Nathan being sick all the time.  I was fed up with being at the hospital what seemed like all the time.  I was fed up worrying how I was going to provide for our family.  I was fed up not having any friends around.  I was fed up that it felt like no one really, really cared about us.  But mostly, I was fed up trying to have faith and have hope that a happy time would come to what felt like was a never-ending bad dream.

I was just tired of everything.  And the anger gave me something to look forward to every day.  If I couldn't be happy every day, I could be angry every day.  If I couldn't have hope every day, I could be angry every day.  Anger, it seemed, was a suitable substitute for just about every emotion.

But I don't really like being angry.  It's not me.  But I couldn't find any other emotion.  Just anger.  It was all over inside me.  And it was wearing me out.  It was beating me.  It was destroying my soul.  And if it wasn't for my wife and my son and the support of a couple of close friends at work, I likely would have given myself up to anger and let it destroy me.

But every night I would come home from work and I would see my boy and how happy he was.  Despite all the crap that he had been through and despite how sick he was all the time, he still found some way to be happy.

Honestly, sometimes it seemed like the only two things that Nathan really knew how to do were to be sick and to be happy.  He was such a great example to his dad.

In the beginning of my anger, I wanted Bekah to be just as angry as I was.  But she wasn't.  She couldn't be.  She saw what it was doing to me and she knew that she had to be better.  And I'm glad she was.

Every night when we would go to bed, she would snuggle in close to me and in a very soft voice say to me "Do you know I love you?"  I would sigh and reply that I did.  Then she would always say "Do you know that Nathan loves you too?"  And I would nod and say yes.

I had the love of the two best people in the world: my wife and my boy.  Which made being angry so very, very hard.  So I knew that for their sakes, for my sake, for all of us, I had to do something to get rid of the anger.

Sunday, July 18, 2010

More Complaining, Part 4

 The battles that you fight within yourself are often times some of the worst.  And I was having quite a knock-down, drag-out one within myself.

I was having an incredibly intense struggle trying to make sense of everything that was going on.  Fighting both the sadness and heartache that was resulting from feeling that either God wasn't listening to my prayers or that I wasn't being earnest or fervent enough as I prayed as well as the anger from their lack of being answered.

Some days I felt that I was being overcome by despair.  Other days I felt like I was getting a handle on my anger.  And then it happened.

At church services one Sunday, we were all informed that our congregation's leader had been hit by a car while he was out riding his bicycle one evening during the week and was unable to attend services that day.  Thankfully, he was OK.  Apparently he was injured quite badly, but the way it was brought to our attention, it seemed like nothing more than a few scrapes, scratches, and bruises and a lot of soreness.  And despite the animosity I felt towards him, I was glad he was OK.  We would never wish anything bad to come upon him, despite the lack of support we felt.

The following Sunday, he was able to return to church and recounted a little of his accident to the congregation.  When he got to the part about how wonderful it was to have such great men that help him at church show up at the hospital to check on him and offer him support and comfort and a blessing, I honestly almost lost it right there in church.  The anger that I had been battling for so many weeks and months finally consumed me.  I felt like a volcano at the point of eruption.

I again thought of all the time Nathan had spent in the hospital and how none of them had ever come to see him.  How we had never had such support and comfort.  How we had asked him so many months before, when Nathan was going to have the very dangerous and scary procedure to fix the hole in his heart, to come up to the hospital to help give Nathan a blessing.  And how he was too busy.  And then when Nathan came, literally, within a few millimeters of dying that day.  And he still didn't bother to take the time to come to the hospital.

And I thought of the other times Nathan had come so close to dying.  And still nothing.  All the time we had spent at the hospital.  All the surgeries.  All the time traveling between home and the hospital.  All the fears.  All the worries.  All the.....everything.  And at the same time all the nothing.  No hospital visits.  No visits to our home.  No calls to stop by his office for a chat.  Only an occasional brief handshake and a 20-second "How's Nathan doing?" in passing as he was being mobbed by other members of the congregation as they paid their tithes and offerings.

And yet for some reason, up to this point I was still willing to give him the benefit of the doubt.  I still believed, or at least I wanted to believe, that he would at some point do SOMETHING!  But now those hopes were gone.  Now I expected nothing from him.  Now I didn't even want to look at him.  Didn't even want to go near him. 

And as for my internal battle, Anger had just taken a commanding lead.

Thursday, July 15, 2010

More Complaining, Part 3

It's been really hard trying to figure out how to start this post.  I know what I want to say, but putting it all together has been rather hard.  That being said, here goes...

We believe in a very real God.  We believe he is an actual being, not just the Supreme Creator and Absolute Ruler, out there governing universe upon universe, but also our Eternal Father in Heaven, who cares about, loves, and has concern for each one of us.

If we pray, He listens.  If we cry, He notices.  If we hurt, He desires to heal and console us.  Always wanting us to do and be good, but never forcing us to.

We believe that everyone, each one of us, is entitled to inspiration from God to try and lead the best life they can.  We also believe that the leaders of the church we attend, including the local leaders, are entitled to an extra portion of God's inspiration, in order to be able to help those under their watch.

As Nathan continued to have repeated health problems, in particular with the shunt, it was so very, very hard to be optimistic, to have hope, to have faith that the day would arrive that he would just be healthy.  With each surgery, we would do the best we could to pray and then hope that God would be merciful to Nathan and to us and grant that this would be Nathan's last hospital stay.

And each time Nathan was readmitted to the hospital was such a devastating blow.  We would plead for the strength to endure and implore God that he would continue to have mercy on Nathan and grant him health and hope again that it would be the last hospital stay.

But it seemed that, at least for me, each time Nathan was readmitted to the hospital, my pleadings with God for him became more earnest and more sincere, but my hope that he would ever actually be healthy was going lower and lower.  And I fully realize how paradoxical that is.  But spiritually, I was really taking a beating.  So much in fact that Bekah was really, really worried about me.

I worried too.  But I really didn't know what to do about it, other than pray.  So in addition to praying for Nathan and Bekah all the time, I prayed a lot that God would inspire someone to know how I was feeling and that they would check on me.  In particular, I was hoping that someone from the congregational leadership would stop by.  But it just wasn't happening.

Despite Nathan's repeated health problems and consistent hospitalizations, we felt a great sense of inaction on the part of our congregational leadership. In the 10 months Nathan had been alive, no one from the leadership had ever been to our house to check on us to see how we were doing.  And to make it worse, no one had ever made the trip to the hospital during the entire 6 months Nathan had spent in the hospital.  Not once.  Never.  Not even for a minute.

And each day that "nothing" happened would just make me more and more and more angry and upset.  But each night I would continue to plead and beg God that someone from the leadership would call or stop by or do something.  But each day I would just become more disappointed, more angry. and more spiritually beat up.

Saturday, July 3, 2010

More Complaining, Part 2

A lot of things weighed heavily on my mind during this time.  Nathan's health and Bekah's well-being, of course, were always at the top of the list.  It was emotionally and physically draining living the roller coaster of a life we had been living.  We did the best we could to comfort, console, and uplift each other through all of the hard times.

I don't know how I would have made it through everything with even a partial bit of sanity if it wasn't for Bekah. And hopefully she would say the same about me.

But there were many, many nights when we would lie in bed and talk about how we were doing and how things were going and what we could do to help and support each other.  And the one thing that would repeatedly come up was that we didn't have any friends.  We had no one to talk to and share our burdens with, other than each other.

Both of our immediate families lived hundreds of miles away, so it was hard for them to be here.  I did have some extended family in the area, but they never called or stopped by to visit  And all of our good, close friends also lived far away.  So we were really hoping to rely on the members of our congregation for support.  That is why we had decided to attend services with our local congregation rather than the services at the hospital.

But at this point, I had come to regret that decision.

What I most wanted was a friend.  Someone to come over to our house, sit down, talk to us, and really see how we were doing.  But the most we ever got was a 2-minute "How's your son?" in between meetings at Church.  Occasionally, we'd get a "We're praying for you."  Which only served to upset me more.

As Nathan kept being sick, one of the things I would routinely pray for was for someone to come over and to just be a friend.  I don't know how to express properly the earnestness and fervor with which I prayed night after night after night.  But that particular prayer always went unanswered.

Occasionally, I would offer up some sort of compromise prayer and tell God that I was willing to accept a phone call in place of a visit, but the phone never rang either.

To say the least, it was very disheartening.

But perhaps the most frustrating and upsetting part was the complete lack of action on the part of the leaders of our congregation.

More Complaining, Part 1

On July 5, Nathan turned 10 months old.  And for the most part, it had been a pretty brutal 10 months.

Nathan's stay in the hospital for the G-Tube surgery was his 7th different stay in the hospital and brought his total time in the hospital to 181 days, or in simpler terms, 6 months.  That meant that his time out of the hospital was 4 months, or 123 days.

With each hospitalization, we kept trying to be hopeful and optimistic that it would be the last one, and that we could enjoy more than just a few days or weeks with Nathan at home.  Up to this point, the longest consecutive time that he had spent at home was 36 days, which mark he had reached twice.  In particular, it was extremely frustrating that we weren't making any progress.  In the 2 1/2 months since I had started counting "days in" the hospital versus "days out" of the hospital, the days in were still 2 months more than the days out.  In other words, we weren't gaining any time.

So as much as we tried to have hope and believe that each hospital stay would be the last, with each subsequent hospitalization, it was becoming harder and harder to hold on to that hope.  Specifically, it was hard because we felt like we had to do it all on our own.

When Nathan was first born, we had made the decision to spend most of Sundays at home so that we could attend our local congregation, instead of attending the services at the hospital.  My initial thought behind that was so that we could benefit from the support and fellowship from the other members of the congregation.

But 10 months later, I was regretting that decision.

We attend a church with a lay ministry.  All of the leadership and teaching positions are filled by members of the local congregation.  Every so often, the positions are rotated through, so that one person doesn't have the burden of responsibility for their whole life and to give others the opportunity to serve as well.

So, since those who serve in leadership positions are your neighbors (or at least live generally in close proximity), it is commonly believed and accepted that they will be interested in the happenings of your life.  And during particularly hard and worrisome times, it is expected that they will be especially mindful of you and your situation and do what they can to comfort and help you.

So in my head, maybe I had envisioned or idealized things happening entirely different than they actually did.  And that's probably the reason it caused me so much stress and anger.

Sunday, June 27, 2010

Nathan, Dad, and Grandma

A couple of days after Nathan was released from the hospital following the G-Tube surgery, Bekah flew off to California for her sisters wedding, leaving me home alone with Nathan.  Fortunately, my mom was able to come and spend a few days with us while Bekah was gone.  I like to think it was for moral support, but in reality she would probably say that it was for her to have some good, quality, bonding time with her grandson.  But no matter what her reasoning, I was very glad to have the help and support.

Having Bekah gone for a few days was very eye-opening.  With her gone, it was up to me to make sure that Nathan got all of his feedings on time and that he got all his meds and anything else that was part of his daily routine, including changing the dressing around his brand new G-Tube, which needed to be done twice a day.

For those that know me, I tend toward the squeamish.  Something that I inherited from my mother.  So when Bekah was at home, she would usually change the dressing while I distracted Nathan.  The skin around the stomy was still quite tender.  So when we would change the dressing and clean around it, it was slightly painful and somewhat uncomfortable for Nathan.  So I would try to distract him and get him to focus on something fun or entertaining instead of getting his dressing changed.

But with Bekah gone, it now fell to me to change the dressing and for Grandma to distract Nathan, which she was quite good at.  In fact, she did her very best to focus all of her attention on Nathan so as not to look at the G-Tube site!  And we had to do it twice a day, so Grandma was quite the trooper, having to cope with probably more than she had bargained for when she agreed to come stay with us while Bekah was gone.

But not everything was hard work for all of us.  There was time for play as well.  Nathan got to take his first real trip to some place other than a hospital, doctor's office, or church when the 3 of us took an evening trip to the grocery store.

Mostly, though, we just stayed home and Grandma got to dote on Nathan all day.  She would sing him songs and tell him stories and tell him about all the fun things that we would all do when he was older and healthier and stronger.  I think it was a good experience for both of them.

I also got to have some good quality alone time with Nathan.  Just in case there were any issues at night, I stayed in Nathan's room and let Grandma have our room.  That way I would be right there should anything happen.

Fortunately, nothing out of the ordinary happened.  But Nathan did like to wake up earlier than I wanted him to, so on those mornings I would get him out of his crib and snuggle with him on the guest bed.  And it wouldn't take long before he would fall back asleep for another hour or two.  I really liked those early morning hours.

As much fun as we had with Mom gone, though, we were happy to have her back home again.  And she had missed us too. 

Wednesday, June 23, 2010

Learning to Care for the G-Tube

The G-Tube surgery was remarkably quick.  And according to Dr. Scaife, it went very, very well. We weren't overly concerned about this surgery, but it's always a relief to hear the surgeon say that everything went well.

Following surgery, we made our way to Nathan's room in the Infant Unit, where he would spend a couple of days recovering and where we would learn how to care for the G-Tube.

As much as we had been through and seen, you would think that we would have been prepared for the giant tube sticking out of Nathan's tummy.  But for some reason, it was still somewhat of a shock to see.

The stomach and abdomen will usually heal in about a week.  To prevent against infection and other problems, the dressing around the G-Tube needs to be changed twice a day for the first two weeks.  It's also important to make sure the area around the stomy is cleaned each time you change the dressing as well. 

Following the surgery, they started Nathan on clear fluid and ran his feedings really, really slowly at first.  As he would tolerate it, they would increase the rate and eventually transitioned over to formula.

In addition, we were also taught how to care for the skin around the tube, how to spot signs and symptoms of infection, what to do if the tube gets pulled out, signs and symptoms of blockage, how to feed through the tube, how to empty the stomach through the tube, how to hide the tube safely under clothing, and what normal activities can be continued.

It was a lot to learn, so we were glad we had a couple of days to watch and the nurses even had us help change the dressing a couple of times so that we would know how to do it when we got back home.

But perhaps the most pleasant aspect of Nathan's new G-Tube was the fact that we could now see more of his face!  For probably over 8 months, Nathan had had the NG Tube up his nose and taped to his face.  And now that it was gone, it was nice to look at his cute little face, even though he still had the oxygen cannulas in his nose.

Tuesday, June 22, 2010

The Gastrostomy Tube

A gastrostomy is a surgical opening through the abdominal wall into the stomach for the placement of a feeding tube.

There are a couple of ways that a gastrostomy can be made.  One is by an incision through the abdominal wall (the layer of soft tissue and muscle that covers the stomach) from just below the ribs to just above the belly button.  The second is called a percutaneous endoscopic gastrostomy (PEG) and uses an endoscope to help the surgeon poke a hole through the abdominal wall into the stomach.

Because of all of the scars on Nathan's abdomen from all of his previous surgeries, the surgeon preferred to do a PEG placement instead of the surgical placement.  A PEG is considerably less invasive than surgical placement as well.

To place a PEG, the surgeon passes an endoscope, a long, slender tube with a light and a video camera on the end, through the mouth and down the esophagus into the stomach.  The surgeon can then look through the tube and see the inside of the stomach.

 Once the endoscope is in place, the light from the endoscope is visible on the outside of the abdomen.  The surgeon then pushes a hollow needle into the "light" on the skin and the abdominal wall and into the stomach.  A wire is then threaded through the needle into the stomach.

When the surgeon is able to see the end of the wire with the endoscope, he will grab it with a tool on the end of the endoscope and pull it up the esophagus and out the mouth.  A soft, silicone tube is then attached to the wire and then pulled down into the stomach and out through the opening in the abdominal wall.  A small dome-like device on the end of the tube prevents it from pulling the stomach out the opening.

A small bolster is attached to the part of the tube next to the skin to hold it in place.

Tuesday, June 15, 2010

You Mean They Actually Schedule These Things?

Friday morning we received a call from a very nice lady at Dr. Scaife's office.  She was calling to remind us of Nathan's surgery Monday morning and as well as to give us instructions, such as the last time Nathan should eat before surgery.

She also told us where we would need to go to check in.  Which was actually beneficial to us because for all of the surgeries that Nathan had had (and there had been a lot!), none of them had ever been as an out-patient.  They had all been done as an in-patient.  So this was something entirely foreign to us.  Which considering how "experienced" we thought we were, was somewhat nice to remind us that we hadn't "been through it all."

It reminded us of a couple of months before when we had met with Dr. Scaife to discuss Nathan getting the feeding tube.  After he had explained the procedure to us, he had us meet with the receptionist to schedule the surgery.  Our first thought was, "People actually schedule these things?"

Which, when you think about it, makes complete sense.  But when you've never been through that process before, it was a complete shocker.  I don't even know what we were thinking and or expecting in regards to the surgery.  Most likely that they would admit Nathan and do the surgery in the next day or two, since that's what had always happened.

The receptionist informed us that Dr. Scaife's earliest appointment available was nearly 3 months from the date of our appointment.  Three months?  Not only was it a shock that you had to schedule a surgery, it was an even bigger shock that the earliest appointment was nearly three months away!  Who schedules surgery appointments three months in advance?

Apparently most people do.  And so we did.  And now the day was finally upon us.

Sunday, June 13, 2010

Finally Getting Rid of the NG Tube

Nathan was released from the hospital just a couple of days following the Lumbar Puncture.  It happened to be a Thursday.  As it turns out, he was scheduled to be back in the hospital the following Monday for G-Tube placement.

We had scheduled the surgery nearly three months earlier, long before Nathan had had continuous shunt problems.  And we were more than a little worried that this most recent hospitalization would be cause to postpone the surgery.  Which would have been highly, highly disappointing.

We had been looking forward to this surgery for quite some time.  The NG tube had become quite a annoyance to both of us.  It was frequently getting snagged on things, and Bekah had accidentally pulled it out a time or two when putting Nathan down to nap in his crib.

In addition, it was a pain to replace.  We had to bundle Nathan up in a blanket to keep him from moving around as much as we could.  Then I had to hold his head straight while Bekah worked the tube up his nose and down his throat and into his stomach.  Once in, we had to check to make sure it was in the right place.  And this was supposed to be done every 30 days.

Also, Nathan had recently discovered the tape on his cheek that was holding the tube in place.  And he loved to pick at it.  So we were frequently taping and re-taping the tube to make sure it stayed in place.  Which was also quite the adventure.  One afternoon, I was sitting on the couch and looked down at Nathan who was happily laying/sitting in his bouncy chair, when I noticed that he had gotten the tape loose and the tube was starting to eek its way out of his nose.

With stealthy jungle cat-like reflexes, I launched myself from the couch and across the room to where Nathan was.  Accompanied by a loud "Noooooooo!" I quickly placed my hand on Nathan's cheek to hold the tube in place while I clamored for Bekah to get more tape.  Fortunately we were able to avert a "major disaster" that time.

All in all, it was one of the worst things we had to do in caring for Nathan.  And he hated it too.  All the crying and gagging.  Poor kid.  Poor parents.  I guess one of the only pluses of being at the hospital so much was being able to have the nurse replace the tube for us.  And you better believe that we requested it every time we were in the hospital!

So it was a big relief when Dr. Riva-Cambrin gave the go ahead for the G-Tube surgery in a few days.

Thursday, June 10, 2010

Trying to Hope

The LP seemed to work wonders for Nathan.  It didn't take very long to see that it had worked to relieve some of the pressures inside his head.  His eyes were no longer sunsetting and his head looked a lot less bulgy.  He was cranky for a while afterward, but it looked like it was going to work.  At least we were trying to hope it would.

The fact was, we felt very much that we were running really low on hope.  Nathan had been in the hospital at least one day of every month since he had been born.  And we had been battling this &$^%@! hydrocephalus for over 7 months.  And every time we thought we could turn the corner on it, it would reach out its long arms and yank us back. 

Each time we tried something new, we really, really, really wanted to believe it was the one that was going to work.  We tried so hard to not doubt and to not be skeptical.  But instead, to have hope and have faith and believe that at some point we would come to the end of this trial and that Nathan would have the opportunity to live a healthy life out of the hospital .

Wednesday, June 9, 2010

The Lumbar Puncture

A Lumbar Puncture, also known as a spinal tap or by the initials LP, is a procedure used to collect cerebrospinal fluid from the spine. 

For the procedure, a spinal needle is inserted into the lower part of the spinal column, usually between the 3rd and 4th or 4th and 5th lumbar vertebrae in the lower spine. 

In order to properly place the needle, it is extremely important to get the patient in the proper position.  The spine must be curved in order to allow as much space as possible between the lower vertebrae for the doctor to insert the needle.  Generally, the patient is laid on their side with their knees bent.  The head is bowed forward with the chin down so that the neck is bent. 

The area around the lower back is then disinfected and prepared using an antiseptic solution, in order to prevent infection.  The location of the LP is then determined and a local anesthetic is given under the skin and then injected along the intended patch of the spinal needle in order to minimize any pain.

The doctor then inserts the spinal needle, which is thin and hollow, into the space between the two vertebrae in the lower back and slowly advances it towards the spine.  Once the needle reaches the spinal canal, a steady flow of CSF will begin to fill the needle.

At this point, the doctor can measure the pressures in the ventricles in the brain and draw fluid for laboratory analysis if needed.

In Nathan's case, the doctor was going to withdraw enough fluid to "kick start" the ETV into working again.  By withdrawing the fluid from near the base of the spine, the intent of the LP was to "pull" the fluid down from the ventricles, thereby "forcing" the hole open and the CSF to go through it.

Can You Call It "Shunt Malfunction" If There's No Shunt?

We considered it a small victory when we made it through the weekend.  But we knew that it would be a short-lived victory   Nathan was still vomiting and his eyes had begun sunsetting again.  Both sure signs that Nathan was having what we would normally have called a "shunt malfunction."  But since he didn't have a shunt, it was obvious that there was a problem with the ETV.

So Monday we were headed back up to Primary Children's.

Nathan was readmitted again, partially to get him re-hydrated and partially to figure out why the ETV wasn't working.  It had just barely been over 2 weeks since the ETV surgery, so it was difficult for the surgeon to hypothesize exactly what the problem may have been.  His initial guess was that it was most likely that the hole he had poked in the floor of the Third Ventricle had closed over.  But he wouldn't be able to tell without an MRI.

If the hole was closed, his recommendation was to go in and reopen it.  If it was still open, he would try to coax it into draining better.

The MRI revealed that the hole was still open.  So in order to coax the ETV into draining, Dr. Riva-Cambrin was going to perform a Lumbar Puncture on Nathan.

Tuesday, June 8, 2010

Battling Dehydration

As Nathan was getting over the pneumonia, our hopes were still high that the ETV was still working.  Severe vomiting was usually one of signs that Nathan was having neurological issues.  But we chalked up the problems this time to the pneumonia. 

But as he started to get over the pneumonia, the vomiting didn't get any better.  In fact, it started to get worse.  So we took him in to the pediatrician who recommended we take him to get a CT to check what was going on in his head.

The CT didn't show any major changes from his last CT following the ETV, so they sent us back home after scheduling a follow-up appointment with Dr. Riva-Cambrin the next week.

But that night, Nathan was still throwing up everything we tried to give him.  Since he really hadn't been able to keep anything down all day, we started to get worried that he was dehydrated.  So we headed off to the local ER. 

There they inserted an IV an got some fluids going to get his hydration level up.  They ran some labs that came back showing that Nathan was partially dehydrated, but nothing too severe.  So after a few hours they sent us back home.

To help us make it through the night, I went out and bought some pedialyte (pediatric electrolyte drink) so that we could give it to Nathan through his feeding pump and try to keep him as hydrated as best we could through the night.  Eventually, we got a system worked out and the vomiting stopped.

By morning, he was doing considerably better and we were able to transition him from pedialyte to formula the next morning.  We kept him on a slow, continuous feed throughout the day, which was a pain, but it was considerably better than having him throw up constantly.

Tuesday, June 1, 2010

Cough, Cough, Pneumonia

Nathan was released from the hospital following the ETV on June 2nd.  That brought his totals to 156 days in the hospital and 109 days out of the hospital.

We were trying to be really hopefully with this procedure.  After all, not having a shunt is what we had prayed about nearly 6 months before when we first started dealing with hydrocephalus and shunts.  But at the same time, all of our previous bad experiences had made us somewhat paranoid looking for signs of drainage problems or anything else that would indicate that the ETV was not working.

But after a couple of weeks, Nathan started to show signs of possible problems.  So we took him in to the pediatrician and it turned out that he had pneumonia!  Which was not an issue with the ETV, but it still wasn't pleasant.

We started him on medication, but the pneumonia caused Nathan to develop a really nasty cough.  And when he would cough, he would usually cough so hard that it would cause him to gag which would then cause him to throw up.  And he coughed a lot!  We went through burp rag after burp rag after burp rag.  Which meant that we were doing Nathan's laundry every couple of days or so.

We were doing the best we could to keep him hydrated and everything else we could to keep him out of the hospital.  We were especially worried through a stretch of a couple of days where he was throwing up A LOT.

But the worst of it came one night during the middle of his sickness.  Nathan had woken up about 3am or so.  Bekah was in changing his diaper when he threw up.  While she was trying to clean him up and change his clothes, he was wanting to be picked up and held and comforted.  Then when she wasn't able to pick him up as quickly as he wanted, he got more upset and threw up several more times.

We were really, really worried at that point, so I gave Nathan a blessing.  Within a little while he had calmed down and was soon asleep.

The following days and nights were each successively better and his cough started to clear up as well.  Which was a big relief to us since Nathan was scheduled to be getting a G-Tube towards the end of the month.

Sunday, May 30, 2010

Going Ahead with the ETV

We've mentioned many times in regards to Nathan's hydrocephalus and the consistent shunt failures that we were running out of good options. 

To better illustrate that point and to help everyone get a better picture of the position we were in, Dr. Riva-Cambrin informed us that the likelihood of the ETV working was only about 20%.  That meant that there was an 80% chance that it wouldn't work. 

Can you imagine that?  The best option you have in front of you only has a 20% chance that it's going to fix the problem.

As is custom, they scheduled Nathan for surgery the next day, since it is better to have him on the schedule and not need it than to not have him on there and try to fit him in.  Then we went home to discuss it and see if this is what we wanted to do.

That night, we talked a lot and prayed a lot and decided that this really was the best option available to us.

So the next day, they took Nathan for an MRI to get a good look inside his head and to make sure that there was no anatomical reason to not do the ETV.  With the MRI results looking promising, they took Nathan into surgery.

The surgery went really well and Dr. Riva-Cambrin was really pleased.  With the ETV, there was no need for the shunt.  So that was removed.  But unfortunately, none of us had any control over how Nathan's body would respond to the ETV.  A CT the next day showed that the ETV was working, so it was very promising. 

But as with all of the other attempts to fix it, only time was going to tell.

Saturday, May 29, 2010

The Third Ventriculostomy

Inside your brain, there are 4 ventricles.  They consist of two lateral ventricles, the third ventricle, and the fourth ventricle.  The ventricles are filled with cerebrospinal fluid (CSF), which bathes and cushions and helps to protect the brain inside the skull.

The two lateral ventricles are relatively large and C-shaped.  There is one in each hemisphere of the brain.  They are connected to the third ventricle by the foramina of Monro.  The third ventricle is in the midline of the brain and is connected to the fourth ventricle by the aqueduct of Sylvius.  The aqueduct of Sylvius is very small and can be easily blocked, and thus is one of the primary causes of hydrocephalus.  In fact it is the location of the blockage that caused Nathan's hydrocephalus.

The fourth ventricle is also continuous with the central canal of the upper end of the spinal cord.  It provides CSF to the spinal column to help bathe and cushion the inside surface of the spinal cord.  The CSF in the spinal cord goes all the way down to the lumbar cistern near the bottom of the spinal cord.

A third ventriculostomy, sometimes referred to as an endoscopic third ventriculostomy (or ETV), is a surgical procedure that creates a bypass for the CSF around the blockage in the aqueduct of Sylvius and thus eliminates the need for a shunt.

Endoscopic means that the surgery is performed with the use of an endoscope, a thin tube that has a strong light, a powerful magnifying lens, and a passage through which tiny instruments can be passed.  Third ventriculostomy refers to the area where the bypass is made, in other words, through the thin membrane in the bottom of the third ventricle.

The CSF may then flow through the new opening to the normal fluid chambers below the base of the brain.  From there it can then be absorbed into the bloodstream like normal.

Thursday, May 27, 2010

The New Plan

Once Memorial Day had passed, we met with Dr. Riva-Cambrin again to discuss our options.

Following another heart echo, Nathan's cardiologist once again stressed that his little heart was just not ready to handle a VA shunt.  So that one was still out.

Dr. Riva-Cambin mentioned doing another VPL shunt, but on the right side of the chest this time.  Considering how scary and near-deadly the last VPL shunt was, we quickly shot down that idea as adamantly as we could.

I brought up my idea for the "branching shunt" and asked if anything like that had ever been attempted before.  Dr. Riva-Cambrin said that to his knowledge it hadn't, but that he would consider it and if he used it he would write it up in a medical journal and name it after us!

At the end of our meeting, he let us know that the next day in the morning he would be meeting with all of his colleagues in the neurosurgery department to discuss Nathan's situation and to see if any of them had any ideas as well.  Then he would let us know the direction he felt we should take.

So the following day, we received a message from Dr. Riva-Cambrin letting us know one of his colleagues had suggested doing a procedure called a Third Venticulostomy and that he would be in later to explain it to us.

Wednesday, May 26, 2010

Trying to Come Up With a New Plan...Again

The weekend Nathan was admitted to the hospital happened to be the Friday of Memorial Day Weekend.  So we had a really, really long time to think about Nathan's shunt problems.  Which was both good and bad.

It was hard having Nathan in the hospital again.  And it was especially hard having him with an EVD again.  But most of all it was particularly hard not having a plan on what to do next to finally take care of these blasted shunt problems.

At the same time, though, it was nice to have the extra time to really, really think about things.  And there was a lot to think about.  And some of it was heavy stuff to think about, too.

Having the shunt fail again was completely devastating.  This shunt was supposed to work.  This was "the golden shunt."  Since we had previously exhausted all of our good options, we were at a complete loss of what to do next.

When we met with Dr. Walker, he mentioned a ventriculocholocystic, or gall bladder, shunt.  They are quite rare, and Dr. Walker said that he had never done one in anyone as small as Nathan before.  And when you factor in how many procedures Dr. Walker has done, that is making quite a statement.  And throw in the fact that it would likely be very, very dangerous, we were quick to put that one near the bottom of the list.  

He also mentioned a ventriculo-ureteral shunt, or placing the shunt into the ureter, the muscular tube that connects the kidneys to the bladder.  You don't have to worry about absorption with this type of shunt.  Instead, the patient just pees off the excess fluid.  But, especially in someone as young as Nathan, you would have to watch electrolyte levels due to all of the urination.  So maybe a better option, but still not a great option.

All of this weighed heavily on our minds and spirits.  We weren't really worried that Nathan was going to die, but rather the quality of life he was going to have.  Was he destined to be stuck in a hospital room draining into a bag forever?  Would we ever get to have him at home for more than just a few weeks?  These were all questions we didn't have answers to.

So in an effort to seek some type of spiritual guidance or inspiration, Bekah and I went together to our church's highest place of worship.  There, we were reminded of the bonds that we share with each other and with our son.  And that he will always be our son in this life and in the next.  We remembered the blessings and promises that the Lord has promised to the faithful.  It was nice to regain perspective, have a quiet place to think and pray, and be able to spend a little time together as away from our problems as we could get for about an hour or so.

We also decided to spend the weekend brainstorming as many ideas as we could that might be helpful to our neurosurgeon.

First and foremost, we wanted the cardiologist to perform another echo on Nathan's heart to see if there was any improvement that would permit the placement of a VA shunt.

Personally, I came up with what I considered a great idea that I called a "branching shunt" (check out the diagram below):

Our biggest issue with the shunts so far had been Nathan's inability to absorb the CSF.  Once his body had absorbed all that it could, it would just build up until the area was full and cause the shunt to back-up and stop working.  So under my idea, if the distal end of the shunt were to drain into two separate places, if one got full, it could drain into the other.  And then hopefully, before that spot got full, space would empty up in the other spot.  And it could just drain back and forth like that forever.

And those two things were pretty much all that we could come up with.  So we also started praying that the surgeon or one of his colleagues could receive inspiration on something that would help Nathan and give him the best chance to have a normal life.

To us it didn't matter who got the epiphany, the revelation, the inspiration, or whatever you want to call it.  Just as long as someone got it and that Nathan would benefit from it.  That's all that mattered.