Owen Gets a shunt infection
I had been updating this on the main page, but it doesn't really
belong there so I'm moving it here now that I'm home for a few hours. I'll keep
all of the updates for the shunt infection here on this page, so scroll
down to the bottom to see the latest, or click here.
****Updated on June 7nd, 2008****
Just a quick note to all that I won't be as available via email as I
normally am. Owen is in the hospital for at least this week with
a shunt infection. He is doing well, the shunt is out and the
external drain is in. He is feeling much better today and
they think we caught the infection very early before it got a chance
to get very far. I'll post updates as I get time but I didn't grab
the laptop on my way out the door so I have to go to the Ronald
McDonald room to post updates. He's doing well and he's a strong
little boy, so this is just another "bump in the road"!
****Updated on June 9th, 2008****
Sorry I'm updating on the main page, but it's easier
while we're away from home, I'll move it all
off when we get back. Owen continues to do well
and seems to be getting better each day. When we got here
they said his cell count in his CSF was 100 (100 per what
I'm not sure, but that's what they found in the sample
from the shunt tap). By the time got to the OR he had
already had several doses of antibiotics and the sample
they took there had only 25. The sample they took
yesterday just came back and it was at 7 so we are almost
there. We were told that the numbers can reach into the
tens of thousands when the infection isn't caught right
away so it looks like we got it good and early.
The sample has to be "clean" for 7 days before they
can put a new shunt in.
Other than that he is eating well and seems to be
back to his normal self. Unfortunately he's back to
being a normal toddler and seems to spend most of his
day trying to pull out his EVD and central line :-)
We're still in the PICU because they can't find a room for
in the step-down unit. I'm hoping they can get that
settled soon because we can't seem to get in 3 feedings
a day in the PICU with all the times that they have to
kick you out.
We appreciate all the prayers and good wishes that
Owen has been receiving. I'm sure that they have a
lot to do with his great recovery so far.
I will close with a picture of Owen playing with one
of his toys that I took with my phone. He's a trooper!
****Updated on June 10th, 2008****
Owen continues to do better every day. I finally found out what the cell count
mentioned above was refering to, it's the white blood cell count. When that
drops off to 0 then the body doesn't think it has anything left to fight.
They took another sample of the CSF on Sunday morning for culture. Once again
both stains (the quickie tests that come back immediately) were negative.
As of now the cultures from that sample have not grown anything so that is good news. We did
find out yesterday that the orginal culture from the tap and from the OR both
started growing a second bacteria. The good news there is that neither is MRSA and
both respond well to antibiotics. I can't remember what both bacteria were,
but one is MSSA which is methicillin-susceptible staphylococcus aureus. For some
reason the name of the second one escapes me. Anyway, they gave him a few loading
does of Vancomycin the first day after the tap came back positive as they waited
to hear the exact bacteria that we were dealing with. When the results came back
on the first growth, they switched him to Nafcillin because it covered that specific
bacteria. When the second bacteria finally grew a few days later, it turned out
to be one that needed Vancomycin. So hopefully those first few doses were enough
to kick it. He is now on both antibiotics.
There is a lot to tell and I'll give the whole story later, but the most important
thing is that he is back to eating normally and was in a good mood and laughing when
I left today. I had to come back up and spend some time with our daughter (what, we
have two children? Oh yes, I forgot, silly me.) I'm going to bring her down to visit
her brother tomorrow now that they finally moved us out of the PICU to the step down
unit last night. Daddy is with Owen right now while I take care of a few things
here at the house and get his sister. I'll bring the camera down tomorrow along with
the laptop, so I can post some better pictures later. Good night all!
****Updated on June 11th, 2008 9:00 AM****
Daddy called this morning and said that Dr. Fuchs (Owen's normal neurosurgeon Dr. Grant
is off this week, but we know Dr. Fuch's reasonably well from past visits to
the hospital and we like him too) says that the culture from Sunday has grown
again. They are worried that the catheter from the drain, which was put back in the
same hole as the old catheter from the shunt to try and preserve possible new shunt
sites, is harboring some bacteria. Dr. Fuch's is going to move his drain to a new position
on the front of his head to completely clear out the old area. Poor little guy! They
say that he will be able to return to his same room in the step down unit after the
surgery so at least there isn't any more time in the PICU. This may delay his sister's
visit down until tomorrow, depending on when they actually take him in. Right now he's
scheduled as second case, which is usually around 10:30ish, but nothing is ever certain
with surgery schedules.
No one will come out and admit it so far, but we have to
wonder if part of the reason that the infection is not going away is because they
keep having late doses of antibiotics. Two days ago they were still trying to
give Owen his antibiotics through a peripheral IV, which was silly. Peripherals
only go into the smaller veins, aren't meant to last for more than a few days anyway,
and cannot handle the caustic antiobiotics needed to treat a shunt infection. So they
should have ordered a PICC line or a
central line as soon as they ordered the antiobiotics.
Well they kinda did, but it was a weekend and after one failed attempt at a
PICC they just decided to put it off because they were short handed for the
weekend I guess because no further attempts were made. But when they tried to
give him his Nafcillin at Noon on Sunday the peripheral, rather predictably, blew
out. Unfortunately at the same time every available hand was needed to resuscitate
another child, for hours. And there apparently isn't anyone else in the whole
hospital that can put in a line while a team is working on an emergency.
So one
of the nurses tried again to put in another temporary peripheral but failed. He's
been stuck so many times that he doesn't have any viable sites left. It was
decided to skip trying another PICC since it didn't look promising to get one of those
in and go straight to a central line.
They finally called us at 8:00pm to say that they had the central line in and would
be restarting the antibiotics, a mere 8 hours late. Then yesterday they came to say that
one of his doses would be late because some idiot went into the fridge where the
antiobiotics are kept and looked at the "prepared" date instead of the "throw away" date
and threw out everything. The pharmacy was backed up for a few hours figuring out that
mess. So while it could just be the catheter housing the infection, it sure would be nice if they could
get their act together and manage to get him his antiobiotics on a regular basis. *sigh*
I hate that I'm not there for him or his Daddy today with Owen
having more surgery, but his sister and our house, bills, etc all need some attention
at some point. My brother and sister-in-law have been awesome in keeping Sammy and
they do so well with her, but it was getting pretty clear that she needed some Mommy and
Daddy time.
Daddy just called. They have decided to enlarge Owen's ventricles to make it easier to
work, so they have doubled his pressure. They didn't tell Daddy, he just noticed that
the setting on the EVD had been changed.
But it probably means that he's not just hungry
since they won't let him eat, he's also got a headache so they are giving him some
pain meds too. They have also said that his surgery probably won't be until this afternoon
because they try to leave the infected ones until later in the day to lessen the risk
of infecting others. So, more waiting...
****Updated on June 11th, 2008 1:40 PM****
At this point Owen is scheduled for surgery at 3:00pm. They have also added another
procedure to his time in the OR. Right now his
central line is in the femoral vein, meaning that
it inserted in his upper leg, near the groin area. These apparently have a much
higher infection rate than central lines in the subclavian
(under the collar bone) or internal jugular (neck) veins. It was placed in the
femoral because that one can be done in the PICU, the other two types have to
be done in the OR and he needed the antibiotics faster than he could get an OR slot.
Given his current problems with infection though, the neurosurgeon felt that he didn't
need one more thing to get infected, so a pediatric surgeon is going to place
a new central line during the same surgery as Dr. Fuchs moves the drain.
Some
of Owen's white blood cell counts have moved a bit higher in the last day or two, but
not radically so we hope that moving the drain will let him get rid of the last of the
infection.
****Updated on June 11th, 2008 6:22 PM****
Still waiting... Owen got bumped by a trauma case and an appendectomy. They
really want to get it done today because the neurosurgeon doesn't have any time in the
OR tomorrow so they are still waiting in pre-op.
****Updated on June 11th, 2008 8:10 PM****
Owen is finally in for his surgery, he went in at 7:10pm.
They said it would be about an hour and a half
because of it being two surgeries, plus you have to add time for the prep work for
sterilizing him. Daddy just called and said that the pediatric surgeon just came
out and said that the central line has been moved successfully. Dr. Fuchs is
next up. Will post when he comes out.
****Updated on June 11th, 2008 9:10 PM****
Owen is out of surgery. Dr. Fuchs said that Owen did well, no complications.
He said it still seems a bit swollen but hopes that now that the catheter is out
that it will calm down fairly quickly. He took another sample of CSF to culture
and another one will be taken on Friday. So all is well for now, he's still in
recovery and probably won't get back to the room for another hour or hour and a half.
****Updated on June 11th, 2008 10:50 PM****
Owen is back in his room and resting. Now it's time for me to do the same. Good night.
****Updated on June 12th, 2008 9:00 AM****
Daddy called and said that Owen is awake and doesn't seem to be nearly as sore as his
last two operations. He drank a full bottle of milk plus some apple juice and seems
happy now that he's allowed to eat again. The neurosurgeon stopped by and
gave him a once-over and said that it all looked good. Now we just sit back and
wait for the cultures again. He said that the one that they took in the OR might
run clear if the infection was very localized, but given that all of the cultures have
taken several days to grow we won't know anything for sure for a few days. Sammy and
I are going to head down in a few hours to see them, his big sis is really anxious to see
him herself.
****Updated on June 13th, 2008 11:50 AM****
Owen continues to do well. The culture from the new drain showed no white blood cells and
so far hasn't grown anything. I brought down his blue chair with me and he finally got a
chance to sit up today. That has to be nice after a week of laying down. As you can
see, he is enjoying it!
****Updated on June 14th, 2008 11:00 AM****
And the waiting continues... Dr. Fuchs came by this morning to say that his culture from
Wednesday night is still negative. This is the longest we have been without growth, so we
are hopeful. Of course this is in a new site, so there isn't any way to know if the infection
is truly gone from the original site. However the swelling is just about completely gone from
the old shunt site and it isn't red anymore. Without something in there to harbor the infection
it should clear up with all of these antibiotics. He hasn't run a temperature since his second surgery, so
that is good news. Actually, he ran a little temp right after the second surgery where they moved his
drain but that was the only time since they originally took out his shunt. Dr. Fuchs said that if
the CSF culture (and the ones that they keep taking) continues to stay negative that he might be able
to get a new shunt around mid-week. They will put it on the opposite side of his head from the original
one to keep it well away from any little bits of infection that might be left.
****Updated on June 15th, 2008 11:00 PM****
Just a quickie update because I wanna go to sleep. Owen had a rough start to today. He woke
up at 6:00 am wanting food. That was awesome because he didn't seem to want to drink anything
yesterday. They had started him back on IV fluids because he wasn't keeping up to his CSF output
to the bag. He puts out almost a half a liter a day into that bag, so it all has to be taken
in to make up for it. So he drank 125 mL of milk which was great, but then started coughing and
threw up most of that. He also put some truly dreadful things into his diaper, so it was clear that
something wasn't right. He was also working hard to lay down flat in the bed rather than staying more
upright, which is a sign of overdrainage. He just didn't look good. So Dr. Fuchs ordered a CT
scan to make sure that he hadn't seriously overdrained and a full round of bloodwork to make sure that
he wasn't losing too many vital things to the CSF. He also raised the pressure on the drain just
to be safe.
Well, the CT scan turned out to be fine and so was the bloodwork. Owen took a long nap in the morning, then refused to eat
much of anything for lunch, just a half a thing of applesauce and that took a lot of work. Then he
took another long nap after that. When he woke up he looked much better. His color was better and he
sat up in his chair and played with me and smiled. He also ate about 3/4 of a Gerber Graduate sweet potatoes
and carrots, a cookie and some Gerber puffs. He still wouldn't touch a bottle, but he's probably not
thirsty with all the IV liquid he is getting. It looks like maybe he has a stomach bug, or his tummy
is not happy with all of the antibiotics. They are testing the poo (ew!!) to see if they need to
give him something to grow back the good bacteria. Normally you wouldn't lose the good bacteria with an
IV antibiotic, but these are really strong and the infectious disease guy says that it can wipe out the
good stuff too. Guess they have to take the Culturelle (which has the good bacteria in yogurt but in
large quantities) when they are getting the IV antibiotics too.
The cultures from Wednesday are still clear so that is good. I think we are all getting anxious to be
home. Owen is asleep now, and I think it's time for me to do the same. Good night!
****Updated on June 16th, 2008 11:00 PM****
All in all a pretty good day. His cultures are still negative and right now the plan is
for him to get a new shunt on Wednesday and then go home a few days later. Unfortunately
they have to move the shunt to the other side of his head and they can't put it in the
back on that side because there isn't enough brain tissue to anchor it. So Owen will
get a frontal shunt (you can see what this type looks like here).
It was nicer in the back, but if it is infection-free I'll like it. He ate a bit better
today, but still threw up his bottle from breakfast. They also tested his blood and found that
his Vancomycin (one of his antibiotics) levels were almost double what they should have been.
One of the side effects of Vancomycin is nausea and vomiting, so maybe that is why he
hasn't been eating right. They are letting the levels come down and hopefully he will eat
better tomorrow. Well, time for sleep!
****Updated on June 17th, 2008 9:00 PM****
Owen is on the schedule for his new shunt tomorrow at 1:00pm. That schedule doesn't mean
much of course, since they pretty much make it up as they go along, but it does mean
that he will most likely get the new shunt tomorrow. I'll be heading back down in the morning to
be there for the surgery and leaving his sister with her Aunt and Uncle. Owen ate better
today. He's still refluxing a lot but he didn't throw up anything today. He doesn't
want his milk either, but they are still pumping him full of fluids too. He seems happy
enough to eat the solids though. Hopefully by this time tomorrow night he will not have
an external drain!
****Updated on June 18th, 2008 8:00 AM****
Change in plans!
Dr. Grant called the room this morning and said that they had a kid holding in the
ICU who wasn't ready for surgery so Owen could take his slot right now. Since Owen is
already NPO and his pressure is set way up Daddy decided to go ahead and let them
do the surgery now. It means that Mommy won't be there again for Owen to go into surgery
but it's better than him suffering all day waiting because they said that the 1:00
slot would probably slide til later. So I'm headed down there quick as I can and hopefully
I can be there when he wakes up. Woo hoo! No more drain!
****Updated on June 18th, 2008 2:00 PM****
Owen has his new shunt! No more drain!!! Woo Hoo!!! He woke up and drank some apple juice
and is now resting comfortably with his oxycodone. Dr. Grant said that Owen did just fine
during his surgery. Normally he would be able to go home the day after a shunt placement,
but given the circumstances he wants him to stay for a day or two just to keep an eye
on him. He is also going to send us home with the
central line still in and with two weeks of Vancomycin (his antibiotic) just to
be absolutely certain we aren't back here again in a few weeks. I'm good with that
kind of thinking. After we clean him up later (kids come out
of surgery a complete mess with all the Betadine and glue and goo they use during surgery) and
when he's a bit more awake I'll take some pictures. We are also looking forward to meeting
little Matthew Owen and his family who are coming for his cord blood infusion tomorrow.
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****Updated on June 19th, 2008 6:45 PM****
Owen is doing a bit better today. He is still quite sore but he is eating alot better. He
doesn't want to drink because his throat is sore from the breathing tube that they use
during surgery, but he has eaten a lot. His potassium levels are somewhat low so they put
him on a supplement and we have been feeding him raisins and bananas. His red blood cell count is
also low. They are monitoring that to see if there is anything they need to do. He is in a much
better mood this afternoon and has been babbling and smiling again. He hasn't needed any oxycodone
today either, the Tylenol seems to be enough for him. The current plan is to send him home tomorrow,
but that could change if he still won't drink tomorrow or if his levels don't come up enough.
We also got to meet the Soldatke family today. They came to Duke for a cord blood infusion today,
all the way from Nebraska! They are a nice family and it was great to get to meet them in person
after corresponding online with them since shortly after they got their diagnosis. Below are a few
pictures of Owen and Matthew Owen together:
****Updated on June 20th, 2008 10:30 PM****
We are home!!!
Owen is home and the whole family is sleeping under one roof tonight. That's the
best thing we could ask for. Owen is doing well and is back to drinking and smiling.
I'll post more tomorrow, but for tonight we are just happy to be home.
****Updated on June 24th, 2008 12:15 PM****
Sorry that it has been so long since I have written an update. In some ways things are
much slower when they are in the hospital since you have nothing to do but sit in their
room and wait. Once you get home there is so much more to do.
Owen is doing very well. We think that one of the reasons that he wasn't eating was the
Keppra that he was taking. This is an anti-seizure medication and I realize that this brings
up a big part of the story that I haven't shared yet. So while he is napping I thought I
would start at the beginning now that we are hopefully near the end.
It all started on the evening of Wednesday June 4th, the day after our daughter's sixth
birthday. Owen had
been running a low-grade fever, never more than say 100.2 and usually just down in the 99.6 range,
off and on for the previous week. This didn't seem unusual
because we had all been sick with a stomach virus - one that had hit the whole family very hard. He
also appeared to have a sinus infection, which is something he has had more than once.
I had made an appointment with the pediatrician for that Thursday to get him some
Amoxicillin to take care of his sinuses. So the night before his pediatrician
appointment I was putting on Owen's pajamas and getting
him ready for bed when I noticed
that the shunt looked different. Normally you can see the exact outline of the shunt
underneath the skin, but now I couldn't make out the shunt nearly as well. This sometimes
happens when he has an allergic reaction to the cats if he manages to really get into a ball
of hair or something. When his eyes puff up, so does his shunt. So I we figured we would
just check back in the morning after a few hours of Claritin.
The next morning the swelling around the shunt seemed worse, which meant that it wasn't his
allergies. It didn't seem the same as when the shunt failed either. When that happened
the area around the shunt got puffy, but when you touched it you could tell it was filled
with fluid, kinda like poking a waterbed. This time it was hard and it didn't really give.
I wrote to the neurosurgeon who thought that it was possible that Owen's congestion with the
sinuses might be aggrevating the area if he was coughing, but he wasn't. My sister-in-law came
to babysit and she also thought that it didn't look right. Within another hour or two his
temperature had shot up to 101.2. He seemed happy as can be, as you can see in these pictures
of him playing in his brand new activity center just before we left for Duke:
When his temp shot up we knew that there was no thinking this was just congestion, so I put
him in the car and headed down to Duke. I didn't really think that there was any need to
bring him to the local hospital for transport, because he was still happy as a clam. About halfway
there he fell asleep and took a good nap. When he woke up though he started to fuss a bit.
I was just about to pull over to check his diaper and his temperature when I saw him
throw up in the baby mirror and then start gasping.
I pulled over in a BP gas station in Yanceyville, NC that
we were passing. He was still throwing up when I got to him and he was awake, but he was
already having trouble breathing. I got him out of his seat and flipped him over for the
baby Heimlich. He cleared it some, but then threw up again and aspirated again. I got him
laying on his side in my lap so that he could breathe a bit better, but it was clear that
the car trip was done. I called 911 on my cell phone. The EMT's there are awesome, it's out
in the middle of nowhere but it couldn't have been 5 minutes after I hung up that they were
there.
Initially it was just an EMT in his pickup that was nearby that came and he had an oxygen mask
with him. He got that on Owen and started the paperwork while we waited for the ambulance.
When the ambulance got there they put him inside and got him suctioned out. He was not
as bad as he was the last time he aspirated, his eyes were still open, but he still wasn't
breathing enough to keep his numbers up on his own and he was pretty non-responsive. To add
to the problem it was hot, I mean very, very hot out. I just looked up the history for that
day on the Weather Underground and the high temp was 93 degrees that day in Yanceyville.
So in addition to the temperature that he was already running it was incredibly hot out,
the air conditioning didn't seem to be working in the ambulance and there were 4 grown men
in the ambulance working on Owen. We believe that this instigated a febrile seizure for
Owen. His hands began to twitch in a rather unnatural fashion and they didn't stop if you
held them. He didn't stiffen and it was localized to just his hands and arms, but it
was fairly obviously a seizure.
Now it is important to note that febrile (meaning during a fever) seizures are not
uncommon in all children, not just those with hydrocephalus. But once you throw hydrocephalus into
the equation, it makes everything more difficult as you will see later in the story.
So back to the ambulance. They tried 4 times to get an IV into Owen to administer some
anti-seizure medication, but they were unable to get one in. They ended up giving him a
shot instead. In the meantime they said that his oxygen levels were still not good and given
the traffic around Durham that time of day, they wanted him to be airlifted to Duke instead
of brought in the ambulance.
I tried to get ahold of Daddy, but he was with Owen's sister at the
doctor for her 6 year checkup. There is no cell phone signal in the doctor's office so I
couldn't get through. So I called my sister-in-law and she called the office directly
to tell them that there was an emergency and could they please tell Daddy that he needed to
get in the car. My brother drove to the doctor's office (about 2 minutes from where he works)
and picked up Sammy and Daddy left right from the office to head for Duke.
They drove us in the ambulance about 250 yards down the road to the
high school where they could meet the helicopter which landed in the parking lot. They
couldn't let me go with him because there was no room in the helicopter. That was about
the worst thing ever when he took off in the helicopter without me, but at least his eyes
were still open and I knew that he was better off than he was last time we went through
his last aspiration. I got in the car and drove the final 40 minutes to Duke, through some really
bad traffic at the end, so I guess the decision to airlift was a good one.
When I got to the emergency room Owen was gone for a CT scan and had already had
a chest x-ray. He came back within a few minutes and they tapped his shunt - the first
time that I had seen that particular procedure. His pressure was fine and the fluid was clear.
The stains - which are the initial quick tests of the CSF -
showed no infection but they sent it out for culture. The ER nurse said that Owen's carbon
dioxide levels were twice what they should have been when he got there, but that this time
he was able to come back on his own with just the suction, he didn't have to be intubated.
The CT scan was fine and the chest x-ray was clear, but the CSF showed some white blood
cells in it. The doctor asked if it were possible that Owen had a virus, which can sometimes
cause them to produce the white blood cells even if there isn't an infection in the shunt.
We told him about the stomach virus and he said that he hoped that was it. After a few
hours Daddy also arrived and we were still in the ER.
I had tried to get an
EEG for Owen that night so that it would be as close as possible to the seizure event, but
it was after hours by the time they had him stable so they told me that it would have to
wait until morning.They weren't going to let us leave
until those CSF cultures had a chance to grow and until he woke up from the seizure medication,
which knocks them out for a good 8 hours, so they admitted us to the PICU. They also
started him on Vancomycin just in case there was an
infection.
The next morning they moved us down to the regular pediatric floor to wait for the CSF cultures.
At the time the neurology resident had told us that they wouldn't
put him on any other anti-seizure medication unless there was a reason to believe that there
was a specific risk of another seizure. Shortly thereafter the PA for neurosurgery came in
and said that the CSF culture had grown out MSSA and the shunt would have to come out and
an external drain would have to be put in.
We were visited by a really great doctor - Dr. Dixon - who is the Pediatric
Infectious Disease Specialist. He was really nice and he visited us every day that Owen was
in the hospital. He explained that this bacteria was one that responded well to antibiotics
and they the white cell counts had only been around 100. In a full blown infection it
can reach the tens of thousands so we knew we had caught it early. They
scheduled him for surgery at 1:00pm. Then they said they were running late and it would be
around 3:00pm. At 4:30ish they brought us down to pre-op. Around 6:00pm he finally headed in
for surgery. It really gives you a sense of perspective when a brain infection is not the
most urgent patient on the waiting list for surgery as they kept bumping him for trauma
cases and such.
So it was back to the PICU that night because there was no room on the step down unit. He
couldn't go to the normal floor because of the external
drain.
Life with an EVD
The general idea is that there is a tube
that comes out of the ventricle of the brain that leads to a chamber where the fluid collects.
This chamber is on a slider that can be moved up and down to change the pressure setting.
The chamber has a line at the top which you line up with the desired pressure setting on the
white card. There is a piece of plastic that is level to the floor that sits right behind
the clamp that you use as a sight line to set the level of the whole apparatus.
The whole apparatus is tied to a string on the IV pole which you use to move it up and down.
You line up the sight line so that it is level with the ear (or the middle of the head
if you have low-set ears like Owen and he is sitting upright) and the drain simply uses
basic gravity and the pressure in the brain to keep the CSF at the pressure that you set.
No electronics, no bings and bongs, just basic hoses. The CSF collects in the chamber
and then the nurse measures the exacts amount every so often and then drains it down into the
bag. When we picked Owen up we had to clamp off the drain so that it didn't siphon.
If we sat him up or layed him down it had to be re-leveled. It's a real hassle but at
least it is easy enough to use that you don't have to call a nurse every time you wanted to
move him.
Below is a picture of the drain system:
The neurosurgeon initially placed the drain tubing in the same hole as the catheter
from the infected shunt, in hopes of preserving as many sites as possible for the
new shunt. Below is a picture of the first drain placement:
A few days later they had to move the drain to a new site because the infection wasn't
clearing:
So we had our drain in and we were hanging out in the PICU when the orders came
up for his medicine. We check absolutely everything and my husband noticed that
there was one on the orders
that we didn't recognize called Keppra. We asked the nurse and she said that
it was anti-seizure medication. We were somewhat stunned because we thought that they
weren't going to put him on it unless there was some big risk. We couldn't get
ahold of anyone in neurology because it was late, and we were afraid that they
were just ordering it because he had hydrocephalus, not because of any risk - which
has happened before. So we refused the Keppra until someone in neurology could talk
to us. The next morning the neurologist came up and told us that the EVD does not
regulate the pressure anywhere near as well as a shunt. Combined with the fact that
he was likely to be running a fever with the infection, he felt that there was a
significantly increased risk of a seizure while the drain was in and the infection was
present. A seizure with an external drain in or during surgery would be a bad thing,
so we agreed to leave him on the Keppra while the drain was in.
We asked if the EEG was clean and he said he hadn't looked at it and didn't know that
one had been done. And then Mommy and Daddy started to grit our teeth as he said that
he had looked at Owen's CT scan and that he had seen cells where they shouldn't be and that
he expected to see abnormal electrical activity on the scan due to that. He
said that most kids with hydrocephalus have seizures and therefore he would have to try
and separate out the normal unusual activity with anything that might have been from
a recent seizure. I am so tired of doctor's making assumptions about things I could
scream. It was all we could do to not throttle the guy as we calmly explained that
Owen had never had a seizure before and that a previous EEG had not shown any
abnormal activity. It was fairly obvious that he didn't believe us. When he
came back from looking at the EEG he sounded completely shocked as he said that he
didn't see any of the abnormal activity that he expected to see and that he saw no
sign of a seizure, so it was probably just febrile activity. He still recommened that
Owen be on the Keppra while he had the EVD though, and we agreed that it might be
prudent.
Which brings us to where I was getting to when I started this post. Owen had stopped
taking any milk at all for the last several days that we were in the hospital and
we had been somewhat worried. They kept needing to put him back on IV fluids because he
wasn't drinking enough. He had also turned rather anemic even though he had not had
any significant blood loss during his surgeries. When they came to put his Keppra in
the morning of the day before we left we started questioning if he should still be on
it. For the first several days that he was on it he would sleep for hours after he got it.
Evenutally he seemed to get used to it and be more alert, but we just didn't want him
on it unless there was a good reason for it since he has no history of seizures.
While Keppra is one of the mildest anti-convulsants, there are none of this class
of medications that do not have significant side effects and they are not something
you want your child on unless there is a good reason. These meds save lives and
improve the quality of life for many, but they are also serious medications to be given
with care and we hadn't seen a soul from neurology since they wrote the orders for it.
We had asked the neurologist what the side-effects of the Keppra were when we decided
to let them give it to him. The anti-seizure stuff that he had received during his
previous two aspirations had knocked him out for 8 hours at a shot and we didn't want
that for Owen. He assured us that this would not happen and that he would be on
a very mild dose. Well with all the problems Owen was having I decided it was time
to Google the stuff. As it turns out anemia is one of the known and more prevalent
side-effects of Keppra. So we really started to push to get someone to talk to us about
whether or not he needed to be on it before his next dose. Dr. Grant came in and said
that normally you
would want to have him on it for a month after a suspected event. A month? We had only
talked about during the EVD, not anything that long. When I asked about the anemia he
said that yes, it could have something to do with it. He also then volunteered that it
might also be why he wasn't drinking because it can cause trouble with swallowing. He
obviously gave it some careful thought because he felt that there might be some risk
of seizures while the body adjusted back to having a shunt but that risk didn't seem to
be worse than what the Keppra might be doing to him, especially in a kid that has no
history of seizures. So he agreed to let us discontinue it that night so that he would
be in the hospital for at least a little while after going off it. He was also somewhat
comforted by the fact that Owen has a neurologist here locally that has been following
him that we could go to if there is a problem. Whether it was coincidence or not, after
Owen had completely missed one dose and was just past the time for the next one, he started
drinking again in earnest. He has not had anything that looked like a seizure since
coming off it either.
So we have been administering his IV antibiotics through his central line with no
problems. The Home Health nurse has been great in getting us set up with that.
Owen is eating and drinking just fine. He's still
a bit weak and sore but he's doing better each day. The eight incisions from his three
surgeries seem to be healing well. The only down side that we are dealing with is that
he is back on the bottle rather than the straw. With the stomach incision he couldn't
sit up and we didn't have his chair there for the first week so he just had to eat in
bed and that is much easier with a bottle. Since we have been home he has been refusing
to drink from the straw and we can't afford to let him skip much in the way of milk
- and more importantly the formula in it with all the iron - while he heals and builds
red blood cells. So that's a battle we'll have to fight when his counts come back up.
Other than that things are going well. This week is my in-law's 50th wedding anniversary
celebration. For well over a year it has been planned that they would rent a house at
Virginia Beach and have all three of their kids and all seven of their grandkids together
for a week. Unfortunately Owen isn't ready for that kind of travel and it would be
very difficult while he is still getting the IV anti-biotics. We were supposed to leave
on Saturday but Owen had just gotten home on Friday afternoon and we really felt that
we needed a few days of us all being home together before anyone left. So today
Daddy and Sammy headed out to the beach for a few days so that we didn't all miss the
whole thing. That leaves Owie and Mommy hanging out for the rest of the week!
We'll try to keep the partying to a minimum :-)
I have one last big thing for this update. I want to send out a big thank you
to our friends the Kominsky's and their wonderful friends who took up a collection
for Owen while he was in the hospital. There are no words to
describe their generosity, but it is greatly appreciated. The money will be
used to get a new feeding chair for Owen since he has outgrown his, and to
cover the cost of hotel rooms and such for his cochlear implant in August.
Thank you, thank you, thank you!
Well, Owen is waking up from his nap so I had better get out there and feed him
some lunch.
****Updated on July 2nd, 2008 11:38 AM****
Yesterday we went down to Duke and got the
stitches taken out of all of Owen's incisions. That made him happy as it
means no more Tegaderm. Tegaderm is a plastic film that they put over a
piece of gauze. You can do this for weeks on end because it allows air
to pass through freely so the skin won't break down like it does with
Band-Aids. However water does not pass through, and this means that
each little bandage acts as a greenhouse when you put it in the sun, and it
doesn't allow sweat to pass through. So unless you stay in a highly air conditioned
environment all the time, the gauze gets pretty nasty after a day or two in the
summer. Therefore it has to be taken off and changed every other day and this is not
fun to pull the plastic off the skin. It is also just unpleasant to have a plastic
film over half your head. Owen is much happier now with all of that Tegaderm gone.
The only bandage he has left is the one on his chest for his central line. He
finishes his antibiotics tomorrow, but they want him to have the line in for a
full week after the antiobiotics just to make absolutely sure there is no infection.
Hopefully later next week or early the week after the line will come out. His
hemoglobin has also come up quite a bit, from 6.3 to 7.6.
Even though we aren't quite there yet (normal is 12) they felt that he was starting to pick up making
the red blood cells on his own and therefore didn't need a transfusion. Woo hoo!
I have been wanting to post a new video I have of Owen but I haven't had time to
get it off the camera and onto the computer. Even
through all of this recuperation he has still managed to acquire some new skills.
Owen has learned how to eat with a spoon! For the longest time he would pick the
spoon up and put it in his mouth, but he would never let it go and put it back
down in the food. Sometime last week he decided that it would probably be a lot
better if he actually put some food on the spoon. I have some great video of him
eating some cereal that I will get up as soon as I get a few free minutes.
****Updated on July 25th, 2008****
This will be my last entry on the infection page because hopefully we are finished with
that chapter of our summer. We are now 5 weeks past the new shunt and all seems well.
We had a few weeks where it was forming a fluid pocket around the shunt every time
he layed down or fussed, but that has gone away. We are told by our neurosurgeon that
this is not an unusual occurence in the first few weeks with a new shunt. His incisions
have healed and his central line is out.
Now we are anxiously awaiting his cochlear implant surgery on August 13th, and even more
so we are waiting for September 12th when they turn it on. We can't wait to see what
this new adventure will bring. I will close with a little video of Owen
signing, sitting up and feeding himself with a spoon. I probably won't update again until
after his surgery unless something else exciting happens. Click on the picture
to see the video.
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