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.

Thank you to all those who comment. We appreciate knowing you enjoy our blog.

Also, we want to say thank you to all those who have recently started following our blog. We hope you find it informative and enjoyable.

We also realize that some of you may wish to contact us. So we have created a special email account for you to do that. Contact us at

Saturday, April 24, 2010

Shunt Infection

By the time we made it to the ER at PCMC, it was well after 10pm.  After checking in, we were led back to one of the rooms to wait for the ER doctor.

Being in the ER is not a pleasant experience.  Being in the ER late at night is even less pleasant.  Once you check into the ER, you are basically at the mercy of the ER staff.  You're not supposed to give your child any of their medications or anything to eat or drink without the OK from the ER doc.  And depending on how busy the ER is and how "serious" your child's emergency is, you can be waiting for a long time.

So we explained to the nurse about the fever and about the shunt and how the pediatrician thinks it's probably a shunt infection.  She wrote stuff down and said the doctor would be in to speak with us as well.  And so we waited.

After a while the doctor finally came in and we had to retell him everything that we had already told the nurse.  He checked the incisions on top of Nathan's head, behind his ear, and his abdomen.  The one behind his ear looked a little swollen and tender.  And when he pushed on it a little, this ugly, slimy, white puss came oozing out by one of the sutures.  Definitely an infection.

So he paged the neurosurgeon resident on call to come over and see Nathan.  As we waited for the him to show up, it kept getting later and later and later.  When he finally showed up, he checked Nathan over and told us that we would be admitted to the hospital and that Nathan would most likely be scheduled for surgery in the morning to externalize the shunt. 

But right now they were going to tap the shunt to draw some CSF from inside Nathan's head to check it for infection as well.  From what they could tell but just looking at Nathan and the infected site, it appeared that the infection was just on the outside of the shunt.  But if it were to penetrate to inside the shunt and get inside his brain, it could lead to meningitis -- a potentially deadly inflammation of the membranes covering the brain and spinal cord.  So they wanted to rule that out as quickly as possible.

Eventually, sometime after about 4am or so, we were officially admitted back into the hospital.  Since we didn't know exactly what time Nathan would be having surgery, we decided that Bekah should stay at the hospital with Nathan so that one of us would be there when it was time to take Nathan in for surgery.  I would be going home to try and get some sleep before heading back up for the surgery in the morning.

Friday, April 23, 2010

If It's Not One Thing, It's Another

Nathan was released from the hospital the day after his shunt surgery.   Following this shunt revision, we were extremely optimistic that we were going to be free and clear from this point on.  In fact, we were very, very hopeful.

It had been less than 3 months since Nathan had been discharged from the NICU, and we had already been re-admitted to the hospital twice for shunt problems.  And this last time was so incredibly scary... So tt's definitely safe to say that things were not going like we had envisioned them when we were originally discharged from the NICU.

At the same time I don't think either of us expected "easy sailing" either.  But things were definitely a lot harder than we had been anticipating.  And throw in the added stress of the shunt failures, hospitalizations, and shunt revisions, and life was just a lot of worry and a lot of work.  So we were both emotionally worn out and physically weary and looking forward to a good long time at home with Nathan.

Unfortunately, those plans didn't pan out.

One night, only a week after Nathan had been discharged from the hospital following his most recent shunt surgery, life turned all topsy-turvy on us again.

First, we noticed that Nathan's heart rate was abnormally high...going at over 170 beats per minute.  That was our first clue that something was wrong.  Nathan's heart rate only went that high when he was really sick.

Second, Nathan had a fever.  And it wasn't just your run of the mill fever.  It was pretty high.  Over 102.  So we were worried.  In fact, we were very worried.

Fortunately, it was early enough in the evening that the after hours clinic at our pediatrician's office was still open.  So we called and let them know what was going on and told them that we were on our way.

The pediatrician on duty that night checked Nathan out and suspected that, most likely, the shunt had become infected.  Since it was most likely the shunt, he recommended that we go up to Primary Children's as soon as possible.  So he called the neurosurgeon on call at PCMC to let him know that we were on our way and would be at the ER in about an hour.

Thursday, April 22, 2010

VP Shunt Revisited

Where to put Nathan's shunt?  That was the $1,000,000 question. 

We had learned from experience, both sad and scary, that Nathan's little body did just not appear able to absorb large amounts of CSF.  Since both the VP and the VPL shunts had failed and with the VA shunt still out of the question, that meant that we were quickly running out of good options, which was more than frustrating. 

Add that to the fact that it had only been another 36 days since the last shunt revision and top it off with how much we were opposed to the shunt back in December and the situation was just becoming more and more and more disheartening all the time

However, Dr. Riva-Cambrin was slightly more optimistic than we were.  He believed that the main reason Nathan's body was having trouble absorbing all of the fluid was because of all of the scar tissue.  And it seemed like a reasonable explanation to us because, well, let's face it: Nathan had a lot of scar tissue!  So the good doctor wanted to give the VP shunt another try, but with a slight twist.

On one of Nathan's x-rays or CT scans, Dr. Riva-Cambrin noticed that there was likely a spot that he could put the distal end of the shunt on the far right side of Nathan's abdomen.  It was a place with no scar tissue -- really the only place on his abdomen that was scar-free --  to impede the re-absorption of the CSF.  It all made sense to us, so we thought we should go ahead and do it.

So Dr. Riva-Cambrin checked with the Dr. Scaife, the surgeon who had done Nathan's CDH repair 7 months before, to see if putting the distal end of the shunt there would be a viable option.  Dr. Scaife agreed that it should work there and agreed to assists Dr. Riva-Cambrin with the surgery, since it was not your typical VP-placement shunt.

So for shunt surgery #3, the first thing they did was to drain Nathan's pleural cavity off the excess fluid.  To do that, they opened up the incision behind Nathan's left ear, disconnected the shunt and basically used the tubing to siphon out about 95% of the excess fluid (that's all he could get out).

Dr. Riva-Cambrin then ran new tubing under his skin, across his chest over to the far right side of his abdomen, where Dr. Scaife made an incision to find a place to put Nathan's shunt.  Apparently Nathan's intestines were jumbled and somewhat "sticky," but unscarred.  Dr. Scaife unstuck the intestines a little and they found a spot behind his liver where they could tuck the distal end of the shunt that looked like it would work perfectly.

As usual, we had been waiting in the Waiting Room during the surgery.  As Dr. Riva-Cambrin walked in following the surgery, the smile on his face let us know that the surgery had gone as well as, if not better than, planned.  Just seeing the smile on his face made Bekah want to get up and dance before he even told us how it had gone.

He let us know about finding the spot behind the liver and how it was about 10 times bigger than the spot he had placed the first VP shunt.  So he and we were all very optimistic.  And by my math, 10 times bigger meant that it should hold 10 times as much and last 10 times as long.  So to me 10 times 9 weeks for the first shunt meant that we should be good for quite a while.

Wednesday, April 21, 2010

An Even Scarier Scariest Day EVER!!!

For the next couple of days following Nathan's Big Scare, we were both more than a little scared and nervous to leave Nathan alone, for even a little amount of time, for fear of having a repeat episode from Wednesday.

And then, to make matters even scarier, Nathan started to develop a very worrisome cough, which seemed to get harsher and wetter as the days went by.  It was like he was trying really hard to cough up a lot of mucus, but that he could never clear it out.

By Monday morning, Nathan's condition had worsened quite a bit.  He was throwing up more again.  And every time he coughed, it just sounded horrible.  His breathing became heavier, yet shallower at the same time.  And he was getting very sweaty, pale, and clammy.  So we cranked up his oxygen, but it didn't seem to be helping at all.  We were at a total loss for what to do to help him and it looked like he was on the verge of going unconscious.  With no other recourse left, we called 911 again.

Fortunately, Monday was my day off.  So I was home this time, which meant that Bekah didn't have to go through it all alone again.  So while I was on the phone with the 911 dispatcher, Bekah was doing the best she could to tend to Nathan and make sure that he stayed awake.

Within a few minutes, the EMS were back at our apartment and we were discussing options of what to do.  It didn't take much more than a quick glance between us to agree that needed to get Nathan to the hospital...and fast.

Since it was snowing outside, I quickly grabbed a blanket, wrapped Nathan up, and ran out the door.  It was a few short steps down the stairs and then a few more to the waiting ambulance.  As soon as we were on board, one of the EMTs handed me an oxygen mask with the rate going at 10 liters per minute and we were headed off to the hospital.

I held the mask over Nathan's face so that he would get as much oxygen as he could.  Nathan seemed so very close to unconsciousness.  His eyes would start to roll back in his head and it looked like he just wanted to relax and let go.  Each time this would happen, I would yell at Nathan really loudly, calling his name, and telling him to stay with me. 

In my head, I just kept half saying to myself, half praying "It can't end this way.  Heavenly Father, it can't end this way."

At times when I'd shout Nathan's name, he'd briefly focus his eyes, but they would quickly go back out of focus and they'd start to roll back again.  When he wouldn't respond to my yelling his name, I would put the oxygen mask as close to his face as I could and give him an intense shot of pure oxygen, which would serve to bring him back for a few moments.

"It can't end this way.  Heavenly Father, it can't end this way." 

After what seemed like forever, we arrived at the hospital.  We rushed into the ER and I handed Nathan over to the ER team and got out of the way.  As much as I wanted to be with Nathan, I more wanted them to be able to do what they needed to do without me being in the way.  They were able to get Nathan stabilized on high amounts of oxygen as Bekah arrived at the hospital. 

To get a better idea of why Nathan was having such problems breathing, the ER doctor ordered a chest x-ray.  And he was confused by what he saw:

The doctor asked if I had seen any of Nathan's chest x-rays before and if I could explain everything on it.  So I walked over, looked at it, pointed out the metal loops that they had used to close his sternum after chest surgery, identified, the NG tube that was running down his throat and into his tummy, identified the tube from his oxygen cannula that was draped over his chest and abdomen, and identified the shunt tubing that was running behind his ear and into his chest.

The doctor mentioned that he also was able to identify all of those, but his main question and concern was the big white cloud taking up most of the left lung area (on your right in the image).  I replied that I didn't know what it was as it had never appeared before in any of Nathan's chest x-rays.

Having said that, he decided that it was in Nathan's best interest to be transferred to Primary Children's for further evaluation.  So they prepared him to be transported and then loaded him into the ambulance again.   This time Bekah rode up with him while I followed behind in the car.

After we made it to Primary Children's and the ER doctor had a look at Nathan's x-ray, he called for Dr. Riva-Cambrin, the neurosurgeon.  Dr. Riva-Cambrin ordered a CT scan to double check what was going on inside Nathan's chest.  As it turns out, as you might have expected, Nathan's body was not absorbing the CSF fluid the shunt was depositing into the pleural cavity.

As a result, the fluid had built up and filled the cavity, which was then pressing against Nathan's lung.  In essence, it was almost like Nathan was drowning, but from the inside.

So the shunt had to come out and come out soon.  The problem, again, though, was where to put it...

Monday, April 19, 2010

The Scariest Day EVER!!!

Towards the end of March, Nathan started to present some signs of shunt failure again.  For about a week he was throwing up more than "normal"...normal for Nathan anyway.  We had begun to accept that because of his jumbled up insides and reflux, there was probably going to be some amount of vomiting associated with having a CDH baby.  It was the "extra" vomitting -- more in quantity, more in frequency, and sometimes violent in nature -- that was worrisome.

Then the excess vomiting went away and some sunsetting of the eyes returned for about a week.  That same week his head size had also gone up a little bit.

And then the sunsetting went away and the vomiting returned again.  And that's where we were at the beginning of April.

Then on Wednesday, April 2nd, Bekah had the scariest day EVER!!!

I was at work, working extra hours on a special project, trying to take advantage of an opportunity to earn some extra income.  Bekah was home alone with Nathan, which was not abnormal.  She did it every day.  But this night was far from normal.

Bekah had laid Nathan down to rest on his side on his boppy pillow in the family room.  As he was laying there, he threw up a little bit.  Again, not that abnormal.  But as Bekah went to grab a burp rag, Nathan started choking.  Then, suddenly, he started to have problems breathing.  His lips started turning blue.  And the rest of him started turning red.

Bekah quickly flipped him over and checked to make sure his airway was unobstructed and/or clear it of any obstructions that might be in there then gave him a couple of CPR breaths.  But nothing seemed to be helping.  His lips were still blue and he had begun to be very clammy and to look very drowsy, like he was going to pass out or lose consciousness.

Bekah was trying her best to stay calm and keep her composure under the intensely emotional stress of the situation and was actually doing an amazing job considering Nathan's condition.  When nothing she tried worked, she was quicklly on the phone with 911.

Fortunately, we literally live right around the corner from the fire station and the EMS.  While Bekah was on the phone with the dispatcher, Nathan's normal color started to return.  And within a couple of minutes the paramedics were at our apartment.

They looked Nathan over and listened to his breathing, but seemed to think that he was doing OK.  However, they did offer to take them to the ER to have Nathan checked out further.  But he was doing enough better that she felt comfortable staying at home.

When I got home from work, not very long after everything had calmed back down, Bekah told me everything that had happened.  She told me how awful and scary it was to have Nathan so blue for what seemed like so long.  But I was so proud of her for staying so calm and level-headed and knowing exactly what to do.  She was really, really amazing considering the horrifying circumstances.

Sunday, April 18, 2010


Nathan was discharged from the hospital on March 2nd, only a couple of days after the shunt revision.  Besides a couple of days of soreness, crankiness, and lots of sleeping, Nathan recovered rather quickly from the surgery. 

Once Nathan was feeling better, we decided that it was time to go ahead and wean him off one of his meds: methadone.  Methadone is a synthetic narcotic drug that is used as an anti-addictive medicine to harder narcotic medicines like morphine. 

From very early on in his life, almost since he was born in fact, Nathan had been a regular on morphine, including a time when he was on a steady morphine drip.  As he got better though, the doctors in the NICU were able to wean down his morphine useand transfer him to methadone.  Methadone helps to mitigate the withdrawal effects of morphine by producing many of the same effects on the body and mind that morphine does, but not quite as "harsh."  But even though the effects aren't as harsh, patients can and often do develop a physical and psychological dependency to methadone and its effects. 

Nathan only came home on 1cc of methadone, which is in the grand scheme of things is only about 1/30th of an ounce.  So it's really not a lot.  But to Nathan, it was quite a bit.  When we had started to wean him off, we only dropped the dose by .1cc.  And it was really rough on Nathan.  He cried and cried and cried for about an hour.  Inconsolably.

We tried soothing him in the rocking chair or walking around, and neither worked.  The only thing that seemed to work was singing.  Now Bekah knows a number of lullabies or little tunes from here and there.  But me?...not so many.  However, I do specialize in making songs up.  So I would make up songs about things I liked to eat with mashed potatoes, or about Nathan being tired and sleepy, or anything else I could think of and put to a tune that would come to mind.  And amazingly, most of the time, it worked brilliantly.  It helped keep Nathan calm during the most brutal hour of the withdrawals.

Once Nathan would become used to the dose, we would give him a few days on it and then lower it again and go through it all over again.  We talked back and forth about things that we could do to try and help Nathan better handle the withdrawals.  Because sometimes even with the singing, it was horrible for Nathan and for us.  Sometimes the withdrawals were so bad and Nathan cried so much.  Sometimes we thought that we would go crazy from the non-stop crying.  But most of the time we just felt so bad for Nathan.  Being so young and having his body addicted to the medication.  It was entirely heart-wrenching.

Then about half-way through the weaning process, it finally dawned on me, like a wave of inspiration.  To help with the physical and emotional anxieties of withdrawal, Nathan had been prescribed an anti-anxiety medication called Ativan.  However, when we had originally been discharged from the hospital, both the methadone and the Ativan were scheduled to be given at the same time!

So since there were being given at the same time, as we were coming down on the methadone, the Ativan didn't have a chance to get a "head-start" in heading off the withdrawal effects from the methadone.  So we bumped the Ativan up half an hour.  And it worked wonderfully!  The withdrawal symptoms were clearly lessened.  I felt so bad that we hadn't thought of it sooner.  It would probably have saved Nathan and us a few restless nights.

Thursday, April 15, 2010

Shunt Revision

Dr. Riva-Cambrin's hunch that Nathan's body was unable to absorb all the cerebro-spinal fluid (CSF) being deposited in his abdomen.  So instead of being reabsorbed into his system, the CSF was basically "pooling" in the pocket of his abdomen where the distal end of the shunt was placed.  Once the "pool" was full, no more fluid could fit in the pocket.  Since the shunt couldn't drain anymore, the fluid had no where else to go.  So it stayed in the ventricles, which is what was causing Nathan's head to get bigger.

So we needed to find a new place for the shunt to drain. 

In general, when a venticuloperitoneal (VP) shunt fails, the preferred next best location is a ventriculoatrial (VA) shunt.  So instead of emptying into the abdomen, the shunt empties into the right atrium of the heart.  From there it is carried through the bloodstream and is eliminated and absorbed throughout the body, not just in a single location.

It sounded like a a great plan to us.  However, given Nathan's long history of heart issues, his cardiologist did not think that his heart would be up to the task.  So he said "No" to the VA shunt.  So that meant that we were looking for another location to place the distal end of the shunt.

Upon closer inspection of Nathan's body, Dr. Riva-Cambrin discovered that there was a large open area around Nathan's CDH repair, in the area around his left lung.  This area is known as the pleural cavity.  It is actually a space between the chest wall and the lungs.  It is lined by a membrane along both the chest wall and the lungs.  A fluid called pleural fluid is generally found in the cavity.  The CSF is added to this fluid and is then absorbed into the body. 

 This type of shunt is known as a ventriculopleural (VPL) shunt.  And with Nathan's wacky anatomy, this seemed like the best option available to us.  All of the pieces just seemed to come together.  Nathan's hernia repair was the answer to solving the hydrocephalus problem!  Brilliant!  We felt that this was Divine Intervention smiling down upon us again.

And the surgery went really, really well too.  They had placed Nathan on a ventilator for safety precautions during the procedure.  But he was able to come right off when the surgery was over. 

So Nathan's shunt revision took place 9 weeks and 1 day from the placement of the original shunt.  And considering how much we struggled with the first shunt, we felt a lot better about this one.  We were hoping and praying that this would be it.  Even though we knew that the odds of having another shunt revision were now dramatically higher, we really, really wanted to believe that Heavenly Father would bless Nathan to be able to heal and move forward.

Wednesday, April 14, 2010

Readmitted to the Hospital

We made it up to see Dr. Riva-Cambrin the last Wednesday of February.  During the previous week, Nathan had actually done pretty well.  He was less cranky than the week before and he was vomiting less as well.  But part of that we attributed to changing his formula to one that was a little less harsh on his tummy.  On the other hand, his head had grown considerably and the soft spot on his head was bulging.

So the doctor requested a CT scan to get a better look at what was going on inside Nathan's head.  After reviewing the results, he decided to admit Nathan for a shunt revision the next day.  It was a bittersweet moment for us.  It was really, really disappointing to be back in the hospital after only 36 days.  But we had missed our friends at the hospital and it was going to be a relief to get Nathan's health back on track.

But to our dismay, Nathan was not readmitted to the NICU.  Apparently he didn't qualify to be in that unit any longer.  Instead he was admitted to the Neuro Trama Unit (NTU) for patients with brain and head injuries and problems.  It was strange being in a new unit with unfamiliar nurses.  But they were very nice and friendly, especially while we waited to find out about the plan for Nathan's shunt revision.

Tuesday, April 13, 2010

Shunt Problems

It wasn't very many days after Nathan's botched hearing test that we started to notice that his shunt was likely having problems.  He began throwing up a lot more. And a lot more violently too.  In addition he was almost perpetually cranky, and his eyes began sunsetting again.

Our weekly meeting with the pediatrician showed that Nathan's head had not grown any since out last appointment, but the soft spot on his head did look a little more bulgy.  So we called the neurosurgeon's office and Dr Riva-Cambrin happened to be out of the office that day.  So we had our next follow-up appointment bumped up a from the first week of March to the the next week, which was the last week of February. 

We were very nervous about Nathan's shunt because we had been told that once you have a shunt revision, the likelihood of future shunt revisions increases dramatically.  So we were hoping that Nathan wouldn't need a revision, but deep down we knew that it was the most likely scenario.

Monday, April 12, 2010

Hearing Test Follow-Up

Some babies who have been on ECMO have experienced hearing loss.  So before Nathan was discharged from the NICU, as part of standard procedure, he had a hearing test to check if he was suffering any hearing loss.  The test showed that Nathan may have had partial hearing loss in his left ear, mostly for sounds about as loud as a whisper.  But because his shunt was left-sided, there was a possibility that the shunt may have interfered with the results, so they recommended that we have Nathan retested.  The re-check was scheduled for the second week of February.

We weren't really worried about Nathan's hearing at this point.  We knew that he could hear since his favorite toys were rattles and noisy things.  And even if he did have partial hearing loss, at this point there wasn't a lot that we could do about it.  So we felt that the hearing test was a little unnecessary at this juncture, but we went ahead with it anyway just to get it out of the way.

In addition to the standard hearing screening, Nathan was also scheduled to have a brainstem auditory evoked response (BAER) test as well.  The BAER test measures brain wave activity in response to certain tones.

 For the test, the patient is to be reclining and remain absolutely still.  Electrodes are then placed on the scalp and on each earlobe.  The earphones give off tones or clicks that stimulate the hearing nerves that run between the brain.  The electrodes pick up the brain's responses to the sounds and records them.

The responses are involuntary, so it is an effective way to test the hearing of those who are unable to respond to a hearing test -- such as babies.  And since the responses are involuntary, the patient does not have to be awake during the test.  Since the audiologist has to place electrodes on the patient to measure the responses, they prefer that babies be sleep deprived, so that they can place the electrodes before he or she falls asleep.

A day or two before Nathan was scheduled for his hearing test, the audiologist's office called with instructions on how to deprive Nathan of sleep.  Basically, we were supposed to keep him up an hour or two longer than normal and get him up an hour or two earlier than normal.  Then we had to keep him awake until we got to the hospital...about a 45 minute car drive away.

So to keep Nathan awake during the car ride, Bekah sat in the back seat next to his car seat.  She shook every rattle we owned and would shout his name every time it looked like he was starting to fall asleep.  Or she would shake his arms and legs like they were dancing.  Nathan did pretty well for the first 30 minutes.  But then he had had enough. Fortunately we made it to the hospital before he became too cranky!

We only had to wait about 15 minutes before we were taken back to meet with the audiologist.  She performed the standard hearing screening on Nathan and he passed perfectly!  She then said that we were cleared to go.  We said that we thought that Nathan had to take the BAER test as well, but the said that since he passed the first test, the second one was unnecessary.  So we headed home, happy and relieved that Nathan's hearing was fine.

A couple of days later, someone from the audiologist's office called and asked us if Nathan had been on ECMO.  We told them yes, to which they responded that in that case Nathan would in fact need the BAER test.

To say that we were annoyed or that this was an inconvenience would be an understatement.  We were so annoyed!  It had not been easy to keep a 5 month old baby awake for an entire 45 minute car ride when we'd kept him up late and gotten him up early and all he wanted was to go to sleep.  It felt like torture trying to keep him awake, and we were in no hurry to repeat that process.  So we just told them that we would get back to them and left it at that for the time being.

Saturday, April 10, 2010

Nathan Laughs!

There are a lot of things you don't think about your child doing, unless they don't do them.  And then when they finally do them, it's like the biggest celebration and party you can imagine.  For us, laughing was one of those things.

Following his shunt surgery, as he started to feel better, Nathan became a really happy baby.  As we would play with him, he would get really, really excited: his eyes would get really big and happy, his mouth would open wide, and he would wiggle crazily.  It was awesome and adorable! 

But he never made any sound.  And honestly, that was more than a little disappointing to us, to have your 5 month old not really make any sounds.

And then one night it finally happened!  As I was playing with Nathan, he made..a happy noise!  I turned to Bekah and asked her if she had heard it too, which she had.  I excitedly said that I thought it was a laugh.  Bekah wasn't so sure.

I was 90% certain it was laugh though, and I really, really, really wanted him to do it again.  So I tried to remember exactly what I had done to cause it and tried to repeat it again.  And sure enough, he did it again.  Now I was 100% convinced that it was a laugh.

I felt like Super Dad!  I had made Nathan laugh.  I was so happy.  There were times that I felt left out because I had to go to work all the time and Bekah got to stay home all day with Nathan.  So being the first one to make Nathan laugh was such a thrill for me.

But not so much for Bekah.  She felt just the opposite of what I felt.  In fact, she felt really bummed out.

Bekah felt gypped for exactly the same reason that I was so thrilled.  She got to spend all day at home with Nathan, so why didn't he laugh for her.

It was a growing experience for both of us as we learned to better appreciate each other and the joys and downers that were going to come along as Nathan grew up.

Thankfully, Nathan started laughing for Bekah in a couple of days, too.  So that definitely helped!

Thursday, April 8, 2010

Follow-Up With the Neurosugeon

A couple of weeks after Nathan had been discharged from the NICU, we were scheduled for his first follow-up with Dr. Riva-Cambrin, the neurosurgeon who had installed Nathan's shunt.  It had been 6 weeks since the surgery, so the follow-up was routine and had been scheduled since before discharge.

This was our first trip back to Primary Children's and our first time taking Nathan anywhere other than the pediatrician's office.  And it was quite an adventure!

Not only did we have to take one of the portable oxygen tanks and Nathan's pulse oximeter, but because PCMC is an hour from home, we also had to pack an extra oxygen tank (just in case) as well as Nathan's feeding pump and any meds that were due while we were to be gone.  And to top it off, we had a small gym bag that we were using as our diaper bag that was packed full of supplies, including numerous burp rags and a change of clothes or two for Nathan (also just in case).

So as we walked down the halls of Primary Children's, we're sure we looked like quite the parade, toting all of Nathan's supplies and carrying him in his car seat carrier.  Thinking back now, it's too bad we didn't take a picture of it!

The appointment with Dr. Riva-Cambin went pretty well.  He asked how Nathan was doing, how his eyes were behaving, and how much he was throwing up.  We let him know for the most part Nathan was doing quite well.  There weren't really any issues with his eyes like there were a couple of months ago, but he was having some issues with vomiting, especially in the mornings, including one really scary one where we think he choked on it and aspirated a little bit.

In addition, since we had last seen Dr. Riva-Cambrin, Nathan's head size had gone down a little bit, which was a good sign that some of the fluid had drained from his head.  However, his head size had not gone down as much as the doctor had wanted, which made him wonder if the shunt might be blocked.  In fact, Dr. Riva-Cambrin actually hypothesized that because of all the scar tissue in Nathan's abdomen, that his body just might not be absorbing the fluid as quickly as it should.

So with the vomiting and the head size issues, Dr. Riva-Cambrin decided that he wanted to keep a close eye on Nathan and asked us to come back in 4 weeks for another follow-up.