Do you know the situation we encounter when a wound doesn’t heal properly? The only thing you can do to help it seems unbearable… you must re-open the already tender and painful wound, pour in a burning antiseptic, and then wait until it reaches the depth of the infection where true healing can begin. This is where we are now. On a quest for healing. We are on a quest to heal old wounds from the past five years, especially the last two years of learning some painful details and being forced to bring up and relive extremely difficult times. I thought my strength had been tested to its max in 2007, but that was recently trumped in this recent year, as you will read below. The wounds are still very raw and tender… but we are attempting to finally put things behind us. We cannot change the past and the circumstances given to us, but we are more committed than ever to everything possible to change the future for Lucas. From here on out… upward and onward.
I started this new blog with a fresh face, after several reasons for a two year break in reporting on Lucas’ treatments and progress. We are now on a new journey for him, and the new blog name is symbolic for this time in our lives. When Lucas was born as a tiny micropreemie, holding on to “hope” is the only thing that got me through the tightrope of life vs. death and all the news we were forced to digest. Today, “hope” remains a constant in our lives, but applies more to beating his disabilities and the card we have been dealt. This word is prominent in many places throughout our home and on personal artificacts that remind me to have strength and on some days to just breath and have faith. Hope has gotten me through devastating doctor’s appointments left in tears, the receipt of bad news, dealing with non-believers and negative medical professionals, and just ordinary days where I watch him struggle. HOPE… I’ve never asked for 100% certainty or odds… I’m ok with 10%… all I need sometimes is a story of inspiration of just one other child that has overcome.
Five years ago, when the neurologist reported that his bleed was the worst she’d ever seen and we were asked to consider ending his life with a Do Not Resuscitate order, we declined. We believed in him. And we clung to hope. We believed he could overcome. And that he did. And he’s been kicking ass ever since. A few months ago at our follow up, that same neurologist said, “I don’t know what you are doing… but I’m amazed at Lucas. The boy that sits in front of me doesn’t match the brain I see in the MRI.” We still have a very long road ahead of us, but couldn’t be more pleased to hear those words from her.
There is part of Lucas’ story that has been untold until now. A major piece that we were unable to share before, that makes him even more of a hero and a miracle than we have all known. I feel now that it needs to be shared, so people understand what this tiny child has really faced.
Lucas – 1 week old
When Lucas was 9 days old weighing just over one pound… while clinging to ventilator-induced breaths and fighting for his life under the critical watch in a Neonatal Intensive Care Unit, two nurses were responsible for changing the IV bags just brought up from the pharmacy. Hospital procedure was always to pull one line at a time to avoid mixing up lines… but that day in haste, they instead pulled all four lines at once and then quickly reconnected them to the cartridges managing the flow rate. Two nurses are assigned to perform this procedure so that there is a “checks and balance” system for this critical change. However, in their rush that day, they inadvertently switched the line for TPN (water/nutrients) with the Lipids line (fats) that he was receiving. As a result, he received the Lipids at the infusion rate meant for the TPN, and vice versa. To generalize this ratio, the TPN should have flowed at 90%, while the lipids were to flow into his veins at 10%… but this was reversed, and he received Lipids at 90%.
Nurses were supposed to check the lines every hour and record the flow rate in his chart. If done properly, these numbers should have revealed the error and it would have been caught within the first few hourly checks. However, again, nurses did not follow protocol and recorded the identical flow rates from the previous hour on the sheet (basically copying from the previous line without looking at the true numbers on the machine). This caused the overdose to go unnoticed hour upon hour….
At 15 hours into the overdose, a blood test was drawn described as milky pink blood. The lab rejected the bloodwork because it wasn’t recognizable. At that time a doctor was notified of the lab rejection, however, no investigation of Lucas was done after this peculiar incident, and the lipids continued flowing into his bloodstream.
Seven hours later, another blood test was drawn, which errored again from the lab. A second time, the blood draw was described as a milky pink substance–nothing that resembled a true blood color. This time, the staff went to observe Lucas and found the error of the lines being switched.
IV Lipids
After 22 hours, and 22 supposed “flow rate” checks, his IV lines were finally stopped at 4 pm in the afternoon. By the time the error was found, Lucas had received 20x the amount of lipids into his bloodstream than what was ordered for this baby weighing 1 lb, 6 oz. Almost the entire bag of white sludge had been pumped into his bloodstream at a volume that could have killed a healthy person, not to mention a tiny baby already in critical condition. The recommended protocol for an overdose like this is an immediate blood transfusion – get the sludge blood out and the new blood in. Tragically, nothing was done for Lucas at that time. They simply turned off the lines, didn’t run any tests, and they just let him lie there… for another 15 hours… with veins pumping through immense volumes of thick lipids.This is worth repeating… they did absolutely nothing for another 15 hours. It wasn’t until the following morning that the doctor decided to run blood level tests, contacted another hospital for advice, and THEN proceeded with a blood transfusion.
That morning, the blood test revealed that his triglyceride level was over 5500. The normal level for a baby is 200. The scale actually stopped at 5500, so it is believed that it was likely double or even triple that number. We have learned that at this level, platelets in the blood are so enormous, it is impossible for blood to clot. The result is that a patient will bleed, and bleed, and bleed, with no ability to stop.
Although we were informed by the doctor two days after the incident (on Easter Sunday that year) in a casual and nonchalant way that lines were switched and that nurses were reprimanded, it was described as a minor occurance. We were not informed how, the extent of the errors, the length of time, or the enormous volume. We were just told that his liver was the only concern with elevated triglycerides (elevated we later learned to be an incredible understatement). He said, “If the counts came back into normal range within 24-48 hours, then we are not worried at all.” Two days later, after two blood transfusions back to back, Lucas’ levels did return within a normal reading, so we believed it was not a big deal. We actually celebrated a hurdle cleared in the NICU that week.
Perhaps the most disturbing part of learning these details about the care of our child, is that upon later review of the medical records from that day, absolutely nothing was recorded in his record other than the one fact of the triglyceride count. Nothing was written about the lab errors, the discovery of the overdose, and no stats recorded at all on him at the time of discovery or treatments… no notes whatsoever. This, in a critical care NICU environment where very detailed notes are taken of every aspect of the patient–even things like what time the parents arrived, time spent at the bedside, etc. I recently learned from a retired nurse after a medical error, if they think the patient is going to die, the staff are instructed to cease writing anything in the patient records. I guess this is the time they followed hospital procedure. I personally believe when they discovered the error and decided not to treat him for 15 hours, that they left him there to die. I remain haunted by this, and will never truly be able to swallow that one. I can honestly say that I have forgiven the hasteful nurse, she did not come into work that day wanting to harm my child. But a doctor made the decision to not act upon learning of the error–the same one that presented the entire event to us that it was really not a big del. There are no words to describe the feeling I carry with me, especially days when Lucas struggles or is pushed hard in therapy, that someone made such a critical and conscious decision to not help my child that laid there in extreme distress. I’m so sorry, my precious baby, that I wasn’t able to protect you.
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A few days later, at day 13, Lucas showed the first sign of a brain bleed. Until this point, his brain was absolutely perfect. In fact, 90% of preemies show bleed in the first 24-48 hours of life. When bleeds do not show up by day three, they assume they are in the clear. Doctors even told us after that monumental 3rd day of tests… “We have good news, and are happy to report that Lucas is in the clear of any brain bleeds and there is no damage that is typical for preemies.” We celebrated that day too.
A few weeks later, we learned that Lucas not only suffered a bleed, but a “severe” one… one that didn’t look like a traditional prematurity related bleed (Intraventricular Hemorrhage). IVH typically bleed somewhat softly into the brain tissue, classified by a 1-4 in severity based on how far the blood reaches from the ventricle into the brain tissue. Lucas’ bleed, however, was later described as a “geyser”… starting in the center of the brain, with so much force behind it, it burst all the way through the brain until it met the wall of the skull, and blood continue to flow outside the skull…filling every available space with blood. This is why our neurologist said it was the worst she’d ever seen, never in her career had she seen a bleed blast all the way through the brain. At the same time, he also suffered an ischemic stroke, caused by a lack of oxygen to tissue on the back left of his brain, from blood unable to carry oxygen to this area.
When Lucas was transferred to another hospital to be seen by neurology specialists and he received his first MRI, it was our first view of the catastrophe in his head… and the beginning of true hell for us in the NICU. The initial days of learning the extent of the damage and having the decision laid at our feet to sign a piece of paper to end our son’s life, or raise a child that was going be a vegetable were the absolute worst of my life. I think the memories and flash backs from those particular weeks will haunt me for the rest of my life.
Along with the missing brain tissue destroyed from the pathway of the bleed, the MRI also revealed a white substance resembling a fatty tumor in the brain cavity. This was later determined to be a lipid deposit. In fact, in later review of 6 WEEKS of his CT scans following the discovery of the bleed, several patches of lipids were shown floating within the large pool of blood in his brain. Eventually after two months, they were absorbed by the body, and are no longer present.
If you thought Lucas was a miracle for all that he had overcome already… with water breaking at 22 weeks and a zero survival rate… surviving 3 weeks in the womb with half amniotic fluid and crossing the line of viability… weighing 1 lb, 6 oz… a severe brain bleed… stroke… hydrocephalus… and then beating ugly meningitis (to top it all off)… To know that he survived this massive overdose is still something I cannot fully get my arms around. I don’t know if I ever will. Whether you are spiritual person or not, its hard not to believe in a higher power. I don’t have the answers, but what I do know is this little boy is meant to be here. And I know he has been a teacher for many of us along the way, as I have been lucky enough to experience this gift in being his mother.
There is no doubt that this little man with the infectious smile and unmatched determination is destined for big things. And thus, the start of the next chapter in our journey. The wound has been re-opened, and the antiseptic admnistered. And we are hoping to heal.
Continued Hope 