24 April 2013

A new diagnosis: Neutropenia

Last week a friend was asking me about the early 90's group Milli Vanilli and mentioned their song Blame It On The Rain. I don't recall hearing the song, although I probably have at some point... Regardless since it was dreary out, I'm blaming everything that I learned today on the rain.

We had a follow up with Luke's ENT this morning and I feel like the appointment was a waste of our time. Luke is still presenting all of the same signs that we've been seeing for months now, sub coastal chest retractions and an audible stridor at various times, usually while he's laying flat and attempting to get comfortable prior to falling asleep. We were initially told he has laryngomalacia and then it was amended to trachealmalacia. Today, I'm not 100% sure what they thought was wrong with him.... I'm pretty sure we are back to him having laryngomalacia, but there is speculation that he could have the sub glottic stenosis that comes along with the trachealmalacia. As long as he is breathing and eating well, they don't appear to be too concerned, but there was talk of completing a brochial scope prior to his open heart surgery to validate the airway will be able to manage the extended sedation.

Following ENT, we travelled across the building to hematology and oncology. This was full of new concepts and vocabulary for me, so hopefully I can recount the discussion accurately. The background - Luke's newborn complete blood count (CBC) showed an elevated number of white blood cells, which apparently can be normal in newborns. When it was re-drawn at the request of our medical genetics doctor in March, a month after Luke had RSV, the CBC showed a decreased white blood cell count and in particular, his absolute neutrophil count (ANC) was right at 500, which was worrisome as it should be around 1500. The deficiency was noted to be moderate, but was justified with his body recovering from him having RSV in early February. When his CBC was redrawn prior to the heart cath last week, the white blood cell count came back low again and specifically the ANC was at 300 this time, which is considered to be severely low. With his white blood cell count this low, he is at a high risk for infection.... In fact, we were told that if he were to contract a fever above 100 degrees that we should take him to the pediatric ER at Fairview Hospital if we weren't able to get in immediately with our pediatrician as they would want to get him started as soon as possible on an IV of antibiotics. The name of the diagnosis is neutropenia. The problem is that we don't know the cause of the low counts. Our hematologist ordered another CBC as well as a few other blood panels today and hopefully they will shed some light on what's going on. If the results from today's test come back low again, we will likely be following up on a weekly or every other week basis with repeated blood draws for up to a few months to attempt to get a trend of the counts. Not to project out too far because there are a lot of what ifs between now and then, but the doctor told me that if the counts continue to stay low for an extended period that she will want to do a bone marrow biopsy to try to learn more about why they are so low.

I've felt a weight on me all day today. I wish we could just enjoy our kids without the emotional chaos a growing list of specialist visits brings to our lives. There is so much to coordinate and schedule and document and learn. It's exhausting. Today I'm tired.

It's so hard to look at Luke and believe there is anything remotely wrong going on inside of his little body (with his heart or with his blood). He is growing, he is alert, he has good color, he is a good sleeper, he is eating well and he has the most wonderful smiles. My heart is telling me to cuddle, enjoy and forget the rest but my mind is constantly reeling with terms I should google and appointments that need scheduled or re-scheduled.

As I share my sadness about our growing list of health concerns, I think about the many many families that have thing worse off than we do and I'm reminded to count my blessings. After our long day today, Luke went to bed early around 8 pm and I was able to spend some precious time alone with Matthew tonight as Dustin was at a friends working on his pulling truck. Matthew and I cuddled and watched tv, played with blocks, read books, played a mimicking game, played peek a boo and I taught him how to share a secret by whispering psst, psst in my ear. He was so funny and engaging. He has the most precious smile and laugh. Sometimes I get stretched thin at home and I hope that I never let that be an excuse to miss out on the blessings that Matthew brings to our lives. He is a real treasure and such a bright light in every day!

Tomorrow Luke has his 4 month well baby checkup (is it okay to call it a well checkup when there are underlying issues?), we have our Help Me Grow coordinator coming out for a service update and Luke also is supposed to have physical therapy. Our house is a wreck and I doubt I have time to clean before our in-home visits tomorrow so I may just have to ask our company to turn their heads the other way and promise to have things tidy for the next visit... I hope tomorrow is better....


  1. Sorry your day was no fun. I always try to remind myself to let it all go and just enjoy Camden...but then one more issue always comes up. It's so hard. I hope when people say the first year is the hardest that it's true. I will be praying for Luke and your sweet family.

  2. Kristin, I am praying for your family. I hope you get the answers you need sooner rather than later. There is so much to keep up with, I agree, sometimes you just want to throw your hands up and just stop and enjoy your children!