While most people probably just nodded and went on with their days, I always found myself plagued with questions related to the 1 doctor that didn't agree. Was he an Extra gum fan? Did he just believe that gum was of the devil, and no type was worthy of his vote? Or perhaps, he vehemently had a problem with a gum company trying to exploit his professional opinion about the substance for their own marketing/sales purposes. I know what you're thinking. Something like this is not worth the time or effort of adult thought. Elisa will tell you that I'm not normal, so there's that. But after years of pontificating, I'm pretty sure I have cracked the code regarding the whole 9 of 10 doctors thing. I know what it wasn't 10 of 10. And it's all thanks to our experiences in NICU.
My hypothesis? It's not that the good doctor didn't believe in the gum. It's just that he wasn't there when they took the straw poll. No opinion on the subject means you can't claim that he/she is onboard. After all, look at Sam. He has now been in the NICU for 11 full days, and is well into this 12th. Over that time, we've learned that doctors in the NICU are called Neonatologists. We have found that every Doctor is completely different in many characteristics: 1) ego 2) knowledge 3) beside manner and 4) personality. And, of course, we found that no Neonatologist can hang with my wife (I actually knew this before NICU, but now I just have verifiable proof). We've also learned that the St. Mark's NICU has 5 Neonatologists in rotation. Dr. Lupine, Dr. Swinton, Dr. Smith, Dr. Peterson, and Dr. Liu. A round five. We have now interacted with four of them (Lupine, Swinton, Smith, Peterson). Only Dr. Liu has avoided our radar, and it's only because she hasn't worked yet. Today, we were introduced to (and peppered her with many questions) Dr. Peterson. Altogether different, but telling us similar things to the other Doctors. By the end of this experience, I'll be able to put together personality profiles of them.
It is clear, however, that 4 out of 5 Doctors seem to agree on a few key pieces of Sam's prognosis (I'll share below). I can't say it's 5 out of 5 yet. Dr. Liu hasn't entered the building yet.
How did this happen?
One of the things Elisa and I really want to know. Elisa was the model of health during her pregnancy. She ate right, watched her medications, rested regularly, and kept up on her folic acid and prenatal vitamins. She didn't experience gestational diabetes. And she got regular prenatal care from her doctor. Yet everyone we speaks to...well, the four...say the same thing. It just sometimes happens. Rarely...as in 1 in 700 births kind of rare. But it happens. There is no known cause, and as Sam continues to fight things, it's most likely we'll never know the cause.
What is Sam battling?
Okay, maybe 4 our of 5 doctors agree on this, but Dr. Peterson was the first to explain it in a way that both helped, and made the lack of answer to Question #1 more difficult. Peterson explained that typical infant pulmonary hypertension is brought on by a disease/infection/problem in the lungs. They don't function appropriately, which puts strain on the heart and develops the hypertension. In those cases, once the lung issue is resolved, the hypertension quickly resolves itself and the baby is on their way to recovery. Sam's lungs have proven to be good, clear, and non-problematic. Simply, he developed pulmonary hypertension, which has put a strain on his lungs to breathe without difficulty. What does this mean? That you can throw the regular handbook out the window. Sam's atypical.
So how is he doing?
Outside of the horrific initial beside manner of Dr. Smith, all of the doctors are aligned with the view that Sam continues to steadily improve. They are satisfied with the results of the echocardiograms (well, so far as getting him out of the NICU...more on that below) and the subsiding pulmonary hypertension. He is now learning to breathe on his own with less and less supplied oxygen. For the past 1.5 days, Sam has been sitting a 0.6 lpm of oxygen. According to Dr. Peterson, we really need him to be down to 0.5 lpm or less before the 48 hour observation can begin. Never before has 0.1 seemed like such a big number.
What's next?
Periodically, the respiratory therapist will review Sam's oxygenation and breathing and determine if his current levels dictate a test of dropping the oxygen level. They will then lower it and watch his oxygenation. Since yesterday, we're aware of three tests and three failures at weaning any lower. Apparently, Sam's oxygenation drops into the 80s. Provided that he does eventually drop at or below 0.5 lpm, we observe him for stability for 48 hours and then can look to getting him discharged. Through the 48 hour period, they will continue to try to get his oxygen down. If they get it around .25 or .2, we may have a conversation about him staying to kick the oxygen completely, but that's to be decided. If he levels above that, we will take our baby home with oxygen and a machine that tests his saturations. Suddenly, I think if that happens, we might never sleep. We'll just hear alarms and worry. All the time.
What about Sam's heart?
Outside of the potential for oxygen, 4 out of 5 doctors seem to agree that we need to follow-up with a cardiologist. The specialist will help us to monitor Sam's pulmonary hypertension to ensure it is fully eradicated, as well as help us with the oxygen weaning process as well. I did inquire about Sam's murmur, as it had been mentioned multiple times without great description. He does have one, and Dr. Peterson indicated that the echo observed a small pda (no, his heart isn't showing a public display of affection...Google tells me that it stands for "Patent Ductus Arteriosus"), which is a natural hole in between the aorta and pulmonary artery. In most cases, the hole closes in the moments or days after birth. Sam's appears to be open (or was as of the last echo). It is very small opening and they aren't overly worried about it. It should eventually close off and resolve itself. Most importantly, Dr. Peterson assured us that the echos have shown "no anatomical problems or structural defects".
Anything else?
The last two days, two nurses have commented on Sam having bouts of rapid breathing (tachypnea). Every time it was mentioned, Elisa and I panicked...was this a sign of further problem? Something undiagnosed? According to the Dr. today, it is to be expected. Sam's bouts of rapid breathing (and slight retractions) will probably hang around after he's home. It will slowly resolve itself, and one day, you'll find it is just gone.
Dr. Peterson, who was equal parts very knowledgeable/helpful and very good giving me a look like "why are you asking me?" with each additional question, let us know that she has a relative back in Michigan that experienced the exact same thing that Sam has. In her case, they didn't know what caused it. She followed a similar path. She went home with bouts of rapid breathing. And now, she's three years old and as healthy as can be. As Dr. Peterson described her, she's a pistol and the hypertension fully resolved itself.
So I guess the whole 4 out of 5 doctors agreeing means...
That I've finally cracked the code behind Trident's marketing campaigns! No, not really. It simply means that we are slowly making progress. We're starting to chart what life after the NICU will be (and there will be more to the story, it appears). We're 0.1 lpm away from actually starting a potential observatory period that could allow Sam to go home.
For now, I'll take that 4 of 5 doctors agree on Sam and his continued (albeit slow) progress. I just personally hope that we are home before Dr. Liu can make the equation "5 out of 5 doctors agree!" With all due respect, of course, to Dr. Liu.
Brad
2 comments:
He's sooooo beautiful guys!! Looks just like big brother Lukas. Such pretty eyes!! Lacy
So glad that he is doing better...you all have been in our prayers...much love, Marc and kathy
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