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:
- they most likely would not get an IV in, and would ruin more veins in the process
- 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…
BUT….
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:
- 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.
- 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.
- 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.
- 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.
- 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.
