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. 

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.

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.

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.

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.

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 .

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.

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.

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.