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.

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.

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.

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.

"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."