What the heck is a Broviac?

We had had several ugly situations occur where doctors and nurses were unable to draw blood from Clark, or put an IV into him. He has small, hidden veins, that tend to blow out when placing needles into them.  Unless someone is using an ultrasound machine to place an IV, we have never seen it be successful.

Through the 80 or so failed attempts we’ve seen doctors and nurses try and poke Clark, he has been incredibly stressed out as it often takes 4-5 people holding him down to try and place a needle.  He is extremely strong for his age, and he doesn’t stop fighting.

When we learned that Clark most likely had Aplastic Anemia, and that he was going to need regular treatments and blood draws, we opted to have a Broviac installed.

What is it?
Little Clark showing off his Broviac

A Broviac is a tube that runs through a persons chest, and attaches a catheder to a vein in your neck.  This is effectively an “open pipe” directly into your heart.  You can pull blood from it, or you can push medicine into it.  And IV can connect directly to it.  So no more needles are required.

There is a similar device, known as a Port (or Port-a-cath).  This device actually sits beneath the skin, and requires poking through the skin to access.  It has less maintenance, but also requires the individual be a certain weight.  Both have their pros and cons.

In asking our doctor which of these would be better, they recommended the Broviac for Clark.

Is it painful?

Quite the opposite. Once in place, you don’t feel any pain from blood extraction or medicine administration.  The Broviac is placed into a person though surgery.  You are placed under general anesthesia (chemically asleep) and are not aware of the procedure at all.

Why did we do it?

With the Broviac in place, Clarkie no longer requires any needles to be placed into his arms or legs.  It takes 15 seconds to hook up an IV.  Clark went from hating doctors visits, to actually enjoying them. Nurses would enter the room, and he would start screaming.  Now he waves, and loves to watch the procedures.  His stress level has been reduced to zero, and his happiness is at 11.

What is the catch?

Of course there is a catch.  Having an open pipe into your heart carries risk.  Bacterial infection being the key risk.  As such, someone has to clean and maintain this piece of equipment, otherwise Clark could very easily get sepsis and die.  So we have reduced Clark’s stress, but it doesn’t go away – it just transfers to the parents.

We now are responsible for taking care of this medical device.  It requires strict daily procedures, and even more strict weekly procedures.  Small tasks from “flushing” the line with heprin, to larger ones like blood pulls (filling tubes with blood to take to the lab) and changing his bandage (very complex procedure, fraught with risk).

Was it worth it?

Definitely. While Beth and I stress a lot about keeping this equipment clean and functioning, we are very releaved that Clark is not longer feeling pain or suffering when we have to visit the doctors.  And we visit a lot, 2-3 times a week on good weeks.

Can it be removed?

Yes, absolutely.  With very little effort, compared to the surgery to put it in.  They sedate you, tug the cable out, and apply pressure on the vein it was attached to.  It is typically done as an outpatient procedure.

Can it be accidentally removed?

Technically yes – someone could pull it, or it could get snagged, and be pulled free.  That said, the device has a “loop” inside the bandage (you can see this in the image) that allows for slack it does get pulled.  So while you have to be careful, it has been designed to be worn over an extended period of time.

20 hours in emergency

It has taken a couple trips to the emergency room to have us re-orientate our thinking around what preventative measures are best for Clark.  One example of this was when we realized having him wear a helmet was better than having to take him into the hospital for random head bumps.  In our latest visit to ER, we’ve also realized that drawing blood or giving medicine with needles or an IV to Clark, also required a new approach as well.

After Clark’s first bone marrow biopsy, we were instructed that if he got a fever above 101.5 after the surgery, that we should immediately call the doctors office and let them know. A fever could mean there is an infection, and since Clark has a low white blood count, he would be unable to fight off bacterial infections without strong antibiotics pumped directly into his blood stream.

Exactly 1 week after the biopsy, Clark had a temperature of 102. So, while we were not surprised when the on-call hematologist sent us to the ER, we were still very nervous about getting blood drawn or an IV.  Patrick and I have learned from previous blood draws, that Clark was not an easy boy to stick with a needle. He has cute chubby arms with tiny hidden veins.

We arrived around 7pm, and of course the first item on the agenda – a blood draw. They wanted to check his CBC (complete blood count) and to check for any obvious bacterial infections.  This initial blood draw took 3 hours, 4 pediatric nurses, 1 anesthesiologist and finally a lab technician to get the minimal amount of blood needed for a small vial.  Through this first adventure, they had blown 4-6 veins in the largest and easiest spots to access.

Knowing more was coming, this was a disheartening start to our visit.

Then came another challenge.  While in ER, the nurses wanted to put in an IV line.  Why, we asked?  Because it “might” be needed later in the visit.  At first I refused, explaining how hard it was to get to Clark’s veins.  As well, I knew that:

  1. they most likely would not get an IV in, and would ruin more veins in the process
  2. or, the IV wouldn’t stay in a 1 yr old who is thrashing around

But fighting with ER nurses takes wisdom and practice, and on this visit, I was still learning both.  So sure enough, they placed the IV while Clark screamed and fought.

The ER doctor also wanted to give Clark a catheter for a sample of his urine (to check for a bladder infection). This I definitely had to question.  If the staff can barely get a needle in my 1 year old’s arm, I’m definitely not letting them jam a catheter into his junk.  Luckily this was one small skirmish we were able to win.  As it turns out there is a cute little bag that they can use to collect his urine sample. No needles, just a harmless sticker. I guess my persistence paid off. The sample was ready a bottle of milk and an hour later.

By the time 11pm rolled around, Clark’s blood tests came back.  He had low WBC, but with high Neutrophils (900) which is the part of the white blood cell that attacks bacteria.  So some good news, we did not end up needing the antibiotics…


Unfortunately the tests did show that Clark’s platelets were dangerously low at 14,000 (normal is 150,000- 450,000).

Because of this, we were admitted at midnight to the pediatric ward for a platelet transfusion.  Most transfusions are done when the platelets drop below 10,000 but extra caution is needed because of Clark’s hemophilia. Platelets and Factor VIII both affect how well his blood will clot. At this point Patrick and Connor arrived at the hospital for support and for more information. Thank goodness, I couldn’t have gone through this without Patrick’s help.

As we had predicted, the IV put in from the ER nurse didn’t stay in.  Another vein ruined, and one fewer spot to place another IV.

Nurses have a funny way of slighting each other.  In this case, our pediatric nurse said that the ER nurse had wrapped Clark’s IV using the same practices as an adult, and not the appropriate method for a child.  My first thought was, why not go down and tell the ER nurse this info – maybe someone else would be saved the suffering of their child being repeatedly being poked with needles?

As this “knowledgeable” pediatric staff started to place a new IV into Clark, we learned the hard way that the best medical care Clark can possibly receive, starts with determination and persistence from his own parents.

Over the next 10 hours, multiple attempts were made to put an IV into Clark.  Each time escalating to a new set of “experts” on placing IV lines.  Pediatric nurses, to ER nurses, to pediatric doctors, to anesthesiologists. By the time the anesthesiologists (who we do consider experts) arrived, they were left with the smallest and remotest of veins.  Again, no luck.  Clark had been in the ER for 15 hours at this point, being woken up every 2 hours for doctors to attempt poking him again.  And each time, there would be 4 of us holding him down while he looked directly at us, pleading for the torture to stop.

And so at this point it stopped.

After the 4th attempt at the new IV, we said stop.  That was enough.  We questioned how badly he needed platelets, and the answer came back that we probably didn’t need the transfusion.  Apparently it wasn’t worth escalating the procedure of placing an IV into his bone.  The next step would have been to push a needle directly into Clark’s thigh bone, and feed directly into his marrow.  They felt that the platelet count was high enough not to warrant this emergency tactic.

When we finally left the hospital the afternoon of the 2nd day, it was with a tired little boy full of holes and low on platelets. His little pokes turned into bruises at every needle site. It took 2 full days of recovery before Clark is turning into his regular, happy, energetic self.


Here’s the benefit of what we learned from this visit:
  1. Pediatric anesthesiologists are our best bet for placing an IV in Clark, although we’ve had success with regular anesthesiologists in the case a pediatric version isn’t available.  Everyone else is simply not allowed to try.
  2. When needing to pull blood, ask for someone from the lab to come up to do it.  They are experts with pulling blood, as it is all they do all day, every day.  We’ve had 100% success with these folks doing the work.
  3. NO TRIAL RUNS!  Don’t waste time with nurses or doctors (ER, pediatric, etc…) attempting to place an IV or pull blood.  SAY NO WHEN THEY SAY: “I’ll just take a look”.  This is code for “I’m better than the last nurse…”, but believe us, it isn’t true.  The truth is that each attempt just ruins the veins that are needed by the anesthesiologists or lab techs.
  4. Arms are the best bet for placing a line.  Forget the ankles.  We have had 0% success with placing lines in the legs.  As well, attempt to place a line in this area is extremely painful for Clark, as well as awkward to attempt to place.
  5. There is a ultrasound machine used in surgery to help Pediatric Anesthesiologists place lines in small children.  Suggest this if the risk of placing a line is high.

Getting a Bone Marrow Biopsy

To determine if Leukemia or Aplastic anemia is causing Clark’s red blood cells, white blood cells, and platelets to be so low, a bone marrow biopsy and aspiration must be done.

Bone marrow is the soft tissue found in the hollow part of most bones and it is responsible for making all three of these types of blood cells.  A bone marrow biopsy is the removal of soft tissue, called marrow, from inside bone. This is used to test for Aplastic Anemia. A bone marrow aspiration is the removal of a small amount of this tissue in liquid form for examination. They use this to test for Leukemia.

Patrick and I were very worried, since this was Clark’s 1st time under anesthesia. About 15 minutes before the operation, Clark was given a liquid calming medicine, nicknamed “Drunk baby”.  This caused him to be “out of it” enough to allow doctors to take him away.  Thankfully Clark’s operation only took about 20 minutes. We didn’t experience any complications and no allergies to the light anesthesia. It was given to him as a gas, and light enough that he didn’t need a breathing tube.

The hematologists were fully aware of Clark’s operation and were not concerned about bleeding since the operation is similar to having blood drawn. No factor was needed. We also made sure the surgeon knew about Clark’s hemophilia, so after the operation a compress bandage was put on to help stop the bleeding quickly. He bled through it in about 15 minutes, but after a bandage change there were no more bleeding issues. He hardly even had a bruise.

Clark woke up from the anesthesia very groggy and incredibly upset. He flopped around and cried for a good 30-45 minutes. We’ve talked to several doctors and parents, and apparantly this is normal for children. Playing with ice chips and eating a popsicle helped calm him down.

Confirmation on his condition was given to us in 3 steps.  The next day, we were given news that Clark most likely did not have Leukemia  (a 95% chance that he didn’t have it).  A couple days later, we got a confirmed negative on Leukemia after looking at his marrow.  Now to wait for the results for the Aplastic Anemia. These results should be here in 5 days to 2 weeks.

On Friday (5 days later) our hematologist called us to say that Clark did not have Aplastic Anemia.  This was a surprise as we were only ever told that these were Clark’s only options.

Unfortunately… this type of science isn’t black and white, and contains a lot of gray area.  In this case, Aplastic anemia had not yet “declared itself”.  This came when we had our second bone marrow biopsy.

In the beginning…

April 8th, 2014 was when the real adventure began for our medical journey with Clark.  While we had several key medical issues leading up to this date (Clark’s mild hemophilia, problems with his left eye, head injuries,etc…), it was on this date that we received confirmation that the smaller issues we were seeing might be tied to a bigger problem.

Two days earlier, Clark had a “comprehensive exam” at the Hematology clinic. A comprehensive exam is a way for us and Clark to meet all our doctors, nurses, physical therapists and social workers in the hematology clinic.  As well, it gives us a chance to address any questions we may have about Clark’s hemophilia as well as his physical and mental development.

In conjunction with attending the comprehensive, it is routine for the patients to have a blood draw and a CBC (complete blood count) done. This is to check factor VIII levels, platelet count, WBC (white blood count), RBC (red blood count) and liver functions.

On April 10th, after getting the results of the blood draw, alarms went off.  Our doctors noticed that Clark had low platelets, low WBC and low RBC. We were told to go in immediately for another round of labs to see if there were any mistakes. 3 separate blood tests all confirmed that his numbers were low, and decreasing.

2 conclusions were immediately drawn.

  • Something was VERY wrong
  • It might be either Leukemia or Aplastic Anemia.

We were immediately scheduled for a bone marrow biopsy to check for both of these diseases.  At the age of 1, Clarkie was to go into his first surgery.