Whew. What a week it's been for doctor's appointments. I have procrastinated writing this update because I knew there would be so much thought process required for me to recall all of the details. I think I'm going to attempt to just stick to the facts (as much as possible) for the update...
Ear, Nose & Throat - 2nd Opinion
We traveled to Dublin on Wednesday for a second opinion from an ENT within the Nationwide Children's (Columbus) network. This doctor was a referral by a new friend in our local community. He completed a nasal scope on Luke and believes that he may have a small amount of laryngomalacia, however with the absence of him having a stridor, he has ordered that he have a fluroscopy completed next week to obtain a better appreciation of what's happening inside Luke's airways. He recommended that we complete a bronchial scope prior to Luke having open heart surgery to validate he will be able to tolerate and more easily come off of the ventilator when the time comes.
Neurology - EEG and Brain Ultrasound
Because Luke has been overusing his right hand and also has had some staring spells (which I think may have been more from just being startled or possibly because he was working to focus his eyes), his Neurologist ordered an EEG and Brain Ultrasound. Both of those were completed this week and fortunately they both were considered to be within normal ranges and negative for a prior infantile stroke and / or infantile spasms.
Cardiology
Following a heart catheterization last month, Luke's cardiologist at The Cleveland Clinic has recommended that we postpone his open heart surgery to repair his AV Canal until he is 18-24 months old. Because the heart is a major organ, we have been in the process of seeking a couple of second opinions... we have obtained one from Boston Children's Hospital and will be obtaining another next week from Nationwide Children's in Columbus. The consultation with Boston was merely sending them his records electronically and having them complete an evaluation based upon the images from his heart cath, echocardiograms as well as his clinical notes. Boston (the number one pediatric cardiology center in the US) is recommending that we elect to have his surgery when he is between 8 -10 months. They believe that he has a touch of pulmonary hypertension which if left untreated will potentially cause irreversible damage to his lungs. I felt like they are throwing a wrench in our plans since we've spent the last few weeks accepting the longer term surgery plan, which really became "worry about it next year" in my mind, so it's a bit hard to stomach the idea that it could still happen in calendar year 2012. We have decided to wait and see what the cardiology team at Nationwide has to say next week before we make any final decisions. More to come on this topic next week I guess....
Hemotology - Follow Up
On Thursday, we went to Cleveland for a follow up with Luke's hematologist. She ordered another CBC and it showed us that Luke's Absolute Neutrophil Count (ANC) was up to 1100. A normal ANC is 1500, but 1100 is within an acceptable and healthy range. We have agreed to a monthly blood draw to check Luke's CBC once per month for the next few months.
This may be TMI (because it's about baby poop) , but it's from a conversation thread I started on a closed Facebook group that I'm a part of for moms of babies born in 2012 and 2013 with Down Syndrome. I'm saving it here, because it's easy to lose stuff on Facebook and I'd like to be able to come back to this later as we get further down the road with his ANC and his stinky, shiny poop problems... (for my 12/13 moms, hope you don't mind me sharing this... I made your names generic to protect your privacy).
Me: I should also add that we had it tested for blood and it was negative.
Mom 1: Check thyroid!
Me: We did thyroid this week and it was normal. His poop almost looks like meconium except he is 5 months old. It sounds like he
could have too much iron based on my research, we are going to stop his vitamins for a few
days to see if that makes a difference...
Mom 2: My daughter
has green poop almost always. She gets half breastmilk, half formula
and still has seeds. Occasionally, she will get mustard yellow, but
it's almost always light green and it stinks!I
would also say that her poop smells worse than my toddler who is on all
kinds of solids, but I think it's because hers is so liquid so I spend
more time wiping.
Mom 3: Well
that pretty much described my son's poo for the last 6 months. He would
go almost 5 days without pooping and we are down to every 3 days. Dr
prescribed lactoloose but I haven't given it to him since he's gotten
better. I can always tell when he is ready
to poop cuz he starts to grunt and his gas is awful. Lol solids have
helped but I have bananas and it stopped him up! The only thing my dr
said to watch for if he is in pain when he poops.
Me: Luke
is only going once every 3 to 5 days too and also has really fowl
gas... Like its so bad it's almost embarrassing... How old is your little guy?
Mom 3: Just turned 8 mo today. It's smells like a messy diaper then I check and nothing! Lol
Mom 4: Kristen,
I think your little man is a mirror to my son ...neutropenia and all.
Right around the same age as your little guy my son's poop turned what I
called black. We had it tested for blood three separate occasions, iron
twice and all negative. Then gastro
just blew me off. My uncle told me to have them check for a fatty acid
malabsorption if it was "greasy" which it sometimes was (he is internal
med md) but I couldn't get anyone to test for that since they said he
was gaining weight he couldn't have malabsorption. Which I think u can
but no one would listen. We just saw gasrto yesterday for other issues
but she is testing brodys pancreatic function because there is a
condition in which the pancreas isn't doing what it should with enzymes
that can cause cyclic neutropenia and " greasy/oily" stools. Maybe check
ok that. Good luck. Hope they listen to u!!
Me: Our
hematologist suggested the malabsorption possibility for greasy stools,
but he is also gaining weight and
tracking well on the growth chart so we haven't gotten too concerned... He seems to be thriving in all
other areas (although he does have AV canal). Do you know the name of
the test for pancreatic function?
Mom 4: I don't off had but I can get into my son's chart and can look but it might be a few days. I will let u know
Me: @ Mom 4 speaking of neutropenia, we saw hematology this week and his ANC was up
to 1100... Maybe he is cyclic? We decided to follow with a monthly draw
for a while to see what happens....
Mom 4: Yeah my son has always been up and down. We did draws every three-four weeks
for a bit. He ranged from like 3000 when he was sick and fighting
something before to now this 320 so not doing so hit fighting this time.
His " normal" is around 700-800. They
told me to officially classify him as cyclic they had to draw twice a
week for several weeks/ months but they unofficially classified him
because be has had so many cbcs over the months they got a good picture
that he goes up and down
Mom 5: We
had the exact same issue and were super-worried. I cut dairy/ switched
him to soy and it continued. Finally got him on nutramigen and he's 10x
better...we suspect he has a severe milk and soy allergy. He also had a
terrible rash, bloating, and vomiting, all of which improved with the
hypoallergenic formula. Have you tried changing his diet?
Mom 4: We
were already on nutramigen with our son and then switched to the good
awful expensive neocate. For our son it didn't matter but we are still on
the neocate and I am paving almost 40 per small can :0
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